Lupus International - Public Relations Campaign

Light On Lupus A Public Relations Campaign for Lupus International

Brittne� Halseide, Elizabeth Thomas, Steven Lieb, Kaitly� Bracken, Alex Casini, Aubre� Swift

Table of Contents Introduction Fact Sheet Executive Summary Background Situation Analysis

Part I. Campaign Plan Goals and Objectives Key Publics Campaign Theme Strategies and Tactics Communication Confirmation Table Calendar Budget Evaluation & Criteria Tactics

Part II. Communication Tactics News Release Feature Article Social Media Special Event Media Alert Media Email Pitch Advertisement Direct Mail Piece Newsletter Poster/Flyer Radio Spot Press Kit

Part III. Appendix Original Research: Interviews Original Research: Survey & Results Preliminary Identification of Publics Research Bibliography

2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24-28 29 30 31 32 33-35 36 37-40 41-44

Introduction Lupus International is a non-profit organization devoted to alleviating suffering and improving prognosis for children, women and men afflicted with lupus. Since 1983, the organization has provided information, support, doctor and patient exchanges/dialogues, training for pediatric fellows and funding for research of novel treatment and a cure for lupus. Funds are raised through major annual events, memberships, corporate sponsorships, grants and generous donations to provide bridge funding for lupus research and pediatric rheumatology fellowships at major United States teaching hospitals and leading research centers.

One of the organizations biggest struggles is the fact that this chronic illness has no cure—a trending issue for every lupus charity across the world. However, in 2011, a new prescription, Benlysta, was approved for treatment—the first new treatment for lupus in more than half a century (Forgione). Lupus International was able to support b-cell studies that contributed to the creation of the drug, setting a milestone in the history of lupus treatments. There are less than 125 pediatric rheumatologists in the U.S., and Lupus International has successfully contributed to these doctors through its fellowships with UCLA, USC and other universities. Though a cure hasn’t been found to end the chronic, life-altering disease, Lupus International remains optimistic and continues to fight for the millions who suffer, constantly reinforcing dedication and hope.

Lupus International strives to spread awareness through education and support, and in April 2010, California Senator Tony Strickland wished his best to the foundation and supported its wishes to declare October as Lupus Awareness Month (Calif. Secretary of the Senate). This was huge success for the foundation, however it still needs work to match the glamorous and fun appeal set be other competing lupus organizations.

On the organization’s website, it emphasizes its successful delivery of information to its market through the Internet and social networking platforms. However, though the official website offers a plethora of information and advocacy, one of Lupus International’s biggest struggles seems to be fully utilizing the use of social networks. In the past year, the organization has posted on Twitter less than ten times and hasn’t posted on Facebook since it joined in 2009.

In order to increase awareness, the organization should capitalize on the public of “Caring Others”—those who have a loved one who suffers from lupus—by implementing a series of tactics including a Lupus Luncheon, followed up with a seasonal newsletter to keep the public in the loop. In addition, the site would do well to incorporate an interactive online forum where caring others can share their stories and struggles. Other events such as Healthy Habits, Study Sundays and Monthly Madness will also attempt to keep all publics (patients, donors, volunteers) active in the ongoing battle against this life-altering disease.

Lupus International

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Fact Sheet Lupus International 17985 Sky Park Circle Irvine, CA 92614

Mission:

The purpose of Lupus International is to alleviate suffering and improve prognosis for children, women and men afflicted with lupus by providing information, support, doctor/patient exchanges and dialogues, and by training pediatric Fellows and funding research for novel treatment and a cure for this chronic life threatening disease.

Organization:

A board of directors oversees Lupus International.

It is small but a mighty group of individuals who are dedicated to serving those families affected by lupus. The board consists of 8 members. There are also six members on the medical advisory board.

Facility:

Lupus International is located in the Sky Park Circle plaza in the city of Irvine, California, close to the 55 South freeway and Red Hill Avenue.

Programs:

Lupus International is a 501c3 non-profit. All funds are raised through major annual events, memberships, corporate sponsorships, grants and generous donations to provide bridge funding for lupus research and for pediatric rheumatology fellowships at major United States teaching hospitals and leading research centers. The most all-encompassing resource it offers is its "Portraits of Success" book, which introduces you to people with lupus from all walks of life. Each section shows you their tricks to succeeding, how the featured

Contact: Christina Kelly (949) 833-2121 ckelly1121@aol.com

people handle the ups and downs of lupus, and the importance of educating yourself on the disease as best you can. It also includes a useful medical section written by leading lupus specialists here in Los Angeles, California, USA. Lupus International also provides a scholarly funding program, "Pocket Relief," to support students with lupus.

Services:

Lupus International provides spot-on views of the latest lupus news, chats with others who have lupus, information about new treatments, as well as research in progress from medical professionals, practical how-to information to manage the illness and day-to day activities, family and care-giving issues, coping strategies, and special programs geared for tweens, teens and college students.

Lupus International participates in community events to increase awareness and education, and hosts online chat forums with medical professionals and leading experts.

Hours:

Unknown

Visitors:

About 30 visitors to the online website a day; but over 1,500 monthly views.

Volunteers:

Lupus International is fortunate to have a many volunteers participate each year by bringing thousands of lupus patients together with their loved ones, and countless valued supporters to a wide variety of fund-raising, educational, and awareness-building events.

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Executive Summary Lupus International is a non-profit organization that provides support and hope to those with lupus through education and aid. It also supports the funding of research programs by encouraging donations and holding events to increase awareness.

Campaign Goal:

We want to develop a strong presence in Orange County by increasing involvement in the programs and events Lupus International offers, while increasing awareness of the illness, especially to young people in the community. Moreover, we want to increase the amount of donors and volunteers so we can expand Lupus International’s capacity to assist those impacted by this illness.

Key Publics:

1. Lupus patients 2. Caring Others 3. Potential donors

Main Objectives:

• Become more active on Facebook and Twitter, and carry out outgoing communications such as email blasts and quarterly newsletters to help create a community.

• Hold three fundraising events to raise money and awareness.

• Specifically involve young people through an internship program and educational seminars on campuses to shed light on lupus.

• Increase amount of interaction and activities among those with lupus by holding regularly planned activities.

Strategies and Tactics:

• Actively reach out to caring others, creating an educational platform to develop a further understanding of lupus and how to best provide support.

• Create a community where men, women, and adolescents living with lupus have a safe place to come, connect, and build a positive support system within Lupus International.

• Motivate donors and volunteers to help Lupus International to be a catalyst for positive change in those affected by lupus in Orange County by informing them of the opportunities to help, educating them on the illness, and inspiring them to be the change.

Budget: $15,294 (estimated) Campaign Tagline:

“Light on Lupus”

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Background Lupus is a complex, multi-faceted autoimmune disease that can currently be treated but not cured. It has been studied since the thirteenth century, when it was given the name “lupus.” Latin for wolf, due to the lesions it sometimes causes that resemble wolf-bites. In 1948, the LE cell, a positive indication of lupus, was discovered which led to a diagnostic test. This led to the treatment of lupus with cortisone steroids, which is still the main treatment used today (Hochberg). Researchers hope to develop a cure, or at least more effective treatments of the disease and seek to enhance understanding of the complexities of the disease.

In the 1970s, lupus awareness began to spread with the development of the Lupus Foundation of America (LFA), the largest national non-profit voluntary organization dedicated to providing support, services, and hope to all affected by lupus. Currently, LFA has nearly 300 chapters nationwide (Statistics on Lupus).

Lupus charities and foundations have worked to develop crucial support systems for patients. The programs promoting information on lupus have helped to connect lupus patients and improve their quality of life.

Moreover, charities have helped to streamline and improve the medication approval process. The work of foundations and donations help to facilitate faster drug trials and patient studies (Paget).

Lupus organizations will have tremendous opportunities if they can break down the issues they face. Garnering support for lupus sufferers may be difficult because unlike many diseases, lupus is more difficult to define or imagine. In a nationwide poll of 1,000 adults, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus. Another survey showed only 40% of young adults claimed to be aware of lupus, even though the disease often strikes during the childbearing years. Of those who claimed they were aware, only 20% could correctly answer basic questions about the disease (Statistics on Lupus).

This could partly be due to the chronic nature of lupus. While it can be debilitating, it rarely causes death, and sufferers usually appear healthy outwardly. Unfortunately this leads to a lack of publicity and awareness. lupus organizations need to develop creative strategies to simplify the complexities of the disease and create a visual for potential supporters of the problems that lupus can create. With more awareness, foundations could capitalize upon events such as “Lupus Awareness Month,” and develop events and benefits to increase support. Additionally, because 90% of those suffering with lupus are women, there is potential to link up with other charities and foundations supporting women’s health (Statistics on Lupus).

When LFA was founded in the 1970s, one of its strongest and most active chapters was the Greater Los Angeles Branch. This chapter continued to grow immensely, and it was clear that its services and programs were being utilized not only outside of Southern California, but also across the nation and around the globe (Lupus International). With the successful expansion of its services, in 1983 the LFA branch was incorporated and it evolved into a separate entity, now known as Lupus International.

The organization is a 501 (c) (3) tax-exempt entity, and is made up of a five-person board of directors and three honorary board members—it’s executive director, Christina Kelly, is a patient of the disease. Lupus International split from LFA to offer its services in areas beyond Southern California. Lupus International established headquarters in Irvine, California—a strength for the foundation since the city of Irvine is one of the nation’s leading medical research and biotech areas.

The organization strives to alleviate pain and suffering for children, men and women with lupus. What separates Lupus International from other organizations is its specified awareness with a focus to detect early undiagnosed cases (Lupus International). It also has fellowships with some of the nation’s top medical institutions (UCLA, Children’s Orange County, USC, UC San Diego, etc.), and aims to train pediatric Fellows for children with the disease.

For the past 28 years, Lupus International has achieved many accomplishments and successes, offering advocacy to thousands of people. The organization has successfully reached sufferers worldwide through its online communications strategies. In 2011, Lupus International launched a new website where Americans and international citizens can participate in “Ask the Doctor Online Symposiums.” To ensure successful international communication, the new site offers all of its publications in various language translations—a unique strength that not many organizations incorporate into their communication tactics.

The organization has also written award-winning publications, such as its book, “Portraits of Success” (Lupus International). In 2011 the foundation launched “Pocket Relief,” a student support program that offers stipends to college students living with lupus. All funds are raised through various events, such as annual golf tournaments, concerts, the annual Lupus Race for Life, and symposiums with highly distinguished doctors and wellknown celebrities such as the Righteous Brothers’ Bobby Hatfiel (“Could I Have Lupus”). However, a major reversal the foundation has faced is due to its competitor, Lupus LA, who offers A-list celebrity endorsements, glamorous balls, and fun parties—a way to make learning about lupus fun and exciting.

On the organization’s website, it emphasizes its successful delivery of information to its market through the Internet and social networking platforms. However, though the website offers a plethora of information and advocacy, one of Lupus International’s biggest struggles seems to be fully utilizing the use of social networks. In the past year, the organization has posted on Twitter less than ten times and hasn’t posted on Facebook since it joined in 2009.

Though Lupus International’s evolution into its own entity from LFA was a bold move, this decision has been a bit of a reversal. LFA’s branches in California have received much more publicity in the media, landing coverage on major outlets for broadcast, print and new media. On the contrary, Lupus International has received support from renowned politicians, for instance when it petitioned against the Energy Independence and Security Act of 2007, a bill which called for more eco-friendly light bulbs and phasing out incandescent bulbs. This change, however, would call for light bulbs such as halogens and fluorescents, which emit UV rays—a common trigger for flares in lupus (“Lupus International Petition”). The petition received support and recognition from presidential primaries at the time, such John McCain, Barack Obama, and Ron Paul.

Lupus International strives to spread awareness through education and support, and in April 2010, Governor Ted Strickland wished his best to the foundation and supported its wishes to declare October as Lupus Awareness Month (“Bill Number: SCR 99”). This was huge success for the foundation, however it still needs work to match the glamorous, fun appeal set by other competing lupus organizations.

One of the organizations biggest struggles is the fact that this chronic illness has no cure—a trending issue for every lupus charity across the world. However, in 2011, a new prescription, Benlysta, was approved for the treatment of lupus—the first new treatment for lupus in more than half a century (Forgione). Lupus International was able to support b-cell studies that contributed to the creation of the drug, setting a milestone in the history of lupus treatments. There are less than 125 pediatric rheumatologists in the U.S., Lupus International has successfully contributed to these doctors through fellowships with UCLA. Though a cure hasn’t been found to end the chronic, life-altering disease, Lupus International remains optimistic and continues to fight for the millions who suffer, constantly reinforcing dedication and hope.

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Situation Analysis Today, Lupus International strives to offer a helping hand to anyone and everyone affected by lupus, whether it be a patient, family member, friend, or community supporter.

As of right now, their strength lies in the broad depth of information Lupus International offers to the public at no charge.

Lupus International currently offers many online services to those affected by lupus, including an interactive website filled with up to date information from the lupus community. They also have a feature called Ask the Doctor On-Line, which international patients often use, to have their specific questions answered easily without having to make a trip to a doctor. The Lupus International website also includes online brochures and resources for national and international inquirers alike.

In 2006, Lupus International published an award winning book, Portraits of Success, which is a compilation of stories of people who have been living with lupus and explanations of how they cope with it. They’ve sold many copies of this inspirational book internationally.

Lupus International currently releases a quarterly magazine, "Lupus Line," which features the latest and most significant research and news in lupus.

In 2011, Lupus International launched a project called Pocket Relief, which offers stipends for college students coping with lupus to pay for books, transportation, housing, and anything else that is necessary for an education. One hundred percent of the donations to this program go directly to students or potential students in need.

Because lupus affects people of all ages, Lupus International caters to every age group. They have a variety of support programs, including support groups for tweens and teenagers with the disease who face challenges that their peers don’t go through or understand.

Lupus International is very involved in the search for a cure for lupus. They contribute funding to pediatric rheumatology fellowships at Teaching Hospitals and Research centers including UCLA, Children’s Orange County, USC, UC San Diego, and Children’s Hospital

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Los Angeles. They provide funding for novel treatments, annual symposiums, community events to increase awareness and education, and online chat forums with medical professionals and leading experts. Because there are currently less than 125 pediatric rheumatologists in the United States, Lupus International spends much of its money funding this field.

In 2009, Lupus International hosted several worldrenowned physicians discuss lupus and its effect on the body – the auditorium filled to capacity for this event.

In 2010, Lupus International’s support center fielded approximately 10,000 calls from lupus victims.

To remain international, Lupus International takes advantage of technology that allows them to launch awareness campaigns via the Internet, print, cable, television, and radio stations and translates them appropriately.

Lupus International also hosts an annual Lupus Race for Life, in which the local law enforcement and fire fighting agencies join the support community to raise money for the cause. This has been very successful in the past – participation costs $100, and participants each receive a t-shirt, refreshments, and a pancake breakfast.

The organization also hosts charity events, such as the Bill Medley Concert, which took place at Lido Theater in Newport Beach. By using celebrities they are more likely to create awareness - however Lupus International struggles to promote these events effectively.

Lupus International has the distinct opportunity to strengthen its brand by highlighting upon pre-existing symbols already set in place. The butterfly logo coupled with the lime and magenta color scheme that is present in other lupus organizations worldwide gives Lupus International a chance to capitalize on other illness related campaigns that have already proven to be successful (i.e. Livestrong, Susan G. Komen, etc.).

Powerful corporate sponsorships have proven to be possible, such as the National Football League partnering with breast cancer. While this is easier said than done, a long-term goal to acquire a large, public sponsor should be set in place.

All of the services offered by Lupus International are free.

Lupus International

Part I

Campaign Plan

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Goals & Objectives The Problem: If Lupus International is not able to gain and engage public attention, they will not be able to reach lupus patients and their families to raise the research funding that the disease so desperately needs.

Goal #1: Increase overall awareness of lupus by establishing a strong presence for organization in Orange County Objectives: 1. Become more active on Facebook and Twitter to help attract 50% more followers by December 2013.

2. Hold three fundraising events directed toward to the community to fundraise and/or increase awareness by December 2013.

3. Specifically involve Orange County students through “Light on Lupus” and “Leap for Lupus” by June 2013.

4. Increase amount of interaction and activities among those with lupus by holding regularly planned activities, implemented by February 2013.

5. Send out media alerts and pitch letters to at least 15 contacts through 2013.

Goal #2: Increase the number of volunteers and donors Objectives:

1. Create an internship program for college credit by February 2013.

2. Reach out to 5 college campuses in Orange County to educated and recruit volunteers by September 2013.

3. Hold mandatory education session for new volunteers each month throughout 2013.

4. Reach out to at least 20 potential corporate sponsors by August 2013.

5. Host a promotional table at one community event per month throughout 2013.

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Key Publics Caring Others: Self-Interest: You have a loved one with lupus and want to be able to support them and be a reliable friend, family member or colleague.

Present Issue: You know that your loved one has lupus, but do you know how to best provide a support system for such a multifaceted disease? Caring others might not have all of the knowledge regarding the endless impacts of lupus. This can ultimately put your relationship at stake or lead to inevitable difficulties communicating and understanding one another.

Present the nonprofit as a solution: Lupus International provides a plethora of support and relationship guidance by actively and effectively distributing information to caring others.

Make Appeal: Lupus patients receive constant professional medical care and guidance, but after enduring long hours of appointments with doctors, they need to be able to rely on their homestead as a safe haven— however, simply because patients are in a comfortable environment doesn’t mean their disease has miraculously disappeared. Even at home your loved one needs a different kind of support that doctors cannot provide. Lupus International provides you with the necessary information to be the best ally possible.

Theme: Learn to love for lupus.

Lupus Patients: Self-interests: Men, women, teenagers, and children all are potential victims of lupus. Lupus International will provide a support group where all lupus patients can come together to talk about the daily effects of this disease and how to try to live a normal life regardless. Patients have a place to stay updated on information involving advances in research, treatment and major fundraisers. They can learn how to live with the disease, as well as teach others how to empathize with someone who has the disease. Children with lupus are typically concerned whether they are able to join activities, play with their friends and what others will think of them. The process of growing up makes children very vulnerable. Lupus International will help build confidence to create a better sense of self for the child.

Present Issue: Lupus is a chronic disease that has no cure and people who have it often do not look ill. That has been the problem with lupus from the beginning.

Present the nonprofit as a solution: As Lupus International begins to shine light on the pain and effects of this disease, the number of donors, volunteers and others willing to spread awareness will increase.

Make the appeal: Support systems, scholarships, and sympathy will provide loved ones living with lupus a strong community to get them through a daily battle.

Theme: Living with lupus

Helping Hands: Self Interest: To actively supports lupus patients and those effected by lupus, Lupus International needs to have the ability to raise funds, spread awareness, or gather volunteers to help work events such as the Lupus Race for Life and Light on Lupus.

Present the issue: Lupus International lacks the manpower necessary to propel itself forward to be an even greater catalyst of change for those effected by lupus.

Present the nonprofit as a solution: Lupus International works directly with Orange County residents that have been affected by the illness. By working with those in the surrounding community, Lupus International is been able to help those directly affected in the nearby community.

Make the appeal: Lupus patients and others affected by the illness need help and all it takes is one person to make a difference.

Theme: Shine light on lupus

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Campaign Theme LIGHT ON LUPUS

Through our research, we have found that most individuals are not aware of what lupus is and how destructive the disease can be.The goal is to shine a light of knowledge about lupus on our key publics. This is why we chose the campaign theme, Light on Lupus.

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Strategies & Tactics Strategy One: Create a community where men, women, and adolescents living with lupus have a safe place to come, connect and build a positive support system within Lupus International.

Tactics 1. Healthy Habits: Arrange weekly dinners where lupus patients will come together and be served nutritious meals made my volunteers. Health professionals will come to speak at every dinner to inform patients of how they can be active and keep in shape while dealing with immobility.

2. Study Sundays: Create a peaceful environment where children and young adults in school can come together to study and be tutored if necessary. The opportunity to learn about scholarships and the Pocket Relief program will be accessible as well. Students who participate in these sessions will receive movie, sports, and concert tickets after a certain amount of study hours.

Possibly partner with professional athletic teams and musicians to make this affordable.

3. Monthly Madness: Engage in monthly events that allow patients to escape their regular routines and step into a different world filled with exciting careers.

A day in the life of a golfer: One has the opportunity to take golf lessons, play around the course, and win special prizes such as golf clubs, balls, or private teaching.

A day in the life of a chef: One has the opportunity to step behind the counter and learn what it’s like to cook like a pro.

A day in the life of a celeb: One has the opportunity to find out what it is like to be pampered all day everyday.

Enjoy a relaxing day at the spa, which includes facials, manicures, massages and more.

A day in the life of a “fill in the blank”: The ideas are endless.

4. Inspire and Inform: On Valentines Day, boxes will be sent to the house’s of Lupus International patients and will be filled with goodies to lift spirits and continue to promote the idea of love within the lupus community. Each box will be filled with yogi tea, inspirational quotes, inspiring books about people who live with lupus and love notes from staff, volunteers and other members.

Strategy Two: Actively reach out to caring others, creating an educational platform to develop a further understanding of lupus and how to best provide support Tactics 1. Create an interactive online forum where caring others can share their stories and struggles. This will establish a community for likeminded individuals enduring similar situations and provide them with an outlet to comfort, advise, and confide in one another.

2. Host an intimate lunch for caring others and their loved with ones with lupus. “Lupus Luncheon” attendees will be able to meet others in similar situations and share struggles of living with lupus, providing support for patients. There will be guest speakers to motivate and provide advice, as well as small group discussions to serve as therapeutic activities.

3. Encourage caring others to constantly remain supportive through offering incentives that applaud their undying commitments. Caring others can submit their stories to Lupus International for a chance to win a luxurious spa day; the organization will pick the five strongest applicants who exemplify a great support system.

4. Publish and distribute a seasonal newsletter that serves to benefit both caring others and lupus patients. The newsletter will be devoted to sharing lupus news, encouraging feature stories/ profiles, and upcoming events—each season will feature a local event for caring others and their loved ones to attend, with the goal of maintaining strong relationships.

5. Distribute various gifts to remind caring others of the important role they serve.

• Personalized key chains with a photo of caring others and loved ones, tagged with the slogan, “Learn to Love for Lupus.”

• Create pocket guides listing the various symptoms and troubles of lupus patients. The pocket guide will serve as an on-the-go guide for caring others to remember the struggles their loved ones may encounter. The pocket guide will not only provide information regarding lupus, but will also be a journal to document the good and the bad, the victories and the failures, and the happiness and sadness throughout the fight.

Strategy Three: Motivate donors and volunteers to help Lupus International become a catalyst for positive change for those affected by lupus in Orange County by informing them of the opportunities to help, educating them on the illness, and inspiring them to be the change.

Tactics 1. Create newsletter and draft an e-mail that includes fact sheets about lupus and opportunities to help Lupus International.

2. Start a basic incentive program for donors and volunteers that corresponds to money donated and hours volunteered (i.e. Purple Status, Gold Status, etc.).

3. Produce a video to be featured on Youtube, Vimeo, and the Lupus International website to show how exactly volunteers and donors can help.

4. Develop promotional campaign, “A Leap for Lupus,” where donors and sponsors can give to an individual or team who will skydive for the cause.

A page will be set up linking to the organization’s web site and social media, promoting the divers with biographies and options to donate.

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Communication Confirmation Table Lupus%International% Communication%Confirmation%Table%

Key Public Caring Others

People with lupus

Helping Hands

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Providing best possible care, staying up-to-date with lupus news, becoming involved, developing better relationships, & learning to deal with the negative facets of lupus

Self-Interests

Members and leaders of Lupus International, loved lupus patients, doctors, peers, community leaders, researchers, educators of lupus, other family & friends.

Influentials

Make Lupus International the go-to place for lupus education, tips, and connections

Objectives

Strategy Actively reach out to caring others, creating an educational platform to develop a further understanding of lupus and how to best provide support

Tactics/Tools -Online interactive forum -Hold “Lupus Luncheon” to connect to others facing similar circumstances -Create contests to reward caring others -Seasonal newsletters -Small tokens to remind caregivers of important roles (Key chains, journal/pocket guides)

Desire to be a part of supportive community for all those affected, to increase confidence in themselves, to participate in enjoyable social day-to-day activities

Volunteers, motivational speakers, celebrities, peers with lupus

Create a community where men, women, and adolescents living with Lupus have a safe place to come, connect and build a positive support system within Lupus International

Build a comfortable home away from home at Lupus International.

Lupus patients will have a safe place to come, connect and build a positive support system within Lupus International.

-Healthy Habits: Weekly dinners where lupus patients come together -Study Sundays: Environment where students with lupus can come together to study -Monthly Madness: Events that allow patients to escape regular routines -Monthly Gift Boxes: Small presents that inspire and inform lupus patients

Actively supporting those with lupus and those affected by it, to be able to raise funds or directly help at events.

Those leading the fight against Lupus in research, fundraising, and in creating awareness

Get those already invested in the fight against Lupus to give more of their time or resources directly to the cause through Lupus Intl.

Motivate donors and volunteers to help Lupus International to be a catalyst for positive change in those affected

by Lupus in Orange County by informing them of opportunities to help, educating them on the illness, and inspiring them to be the change

-Create newsletter/email that includes fact sheets on Lupus and opportunities to help Lupus International -Start a basic incentive program for donors and volunteers (Purple Status/Gold Status) -Produce video to be featured on YouTube, Vimeo, and the Lupus International website to educate volunteers -Develop “Leap for Lupus” promo campaign

Message

“Learn to Love for Lupus”

“Light on Lupus”

"Helping shine a light on Lupus.”

Calendar Month Week Social Media Redesign and launch Facebook Redesign and launch Twi5er Redesign and launch Website Twi5er/Facebook Takeover for Leap for Lupus Media Rela6ons Create press kit Radio Ad Write feature ar@cle DraB special event media alert Write spokesperson bio Build media list Email blast DraB pitch le5er Send out pitch to media Events and Promo6ons Lupus Luncheon Book Venue for Lupus Luncheon

2013 Lupus Interna6onal Campaign Calendar February March April

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Confirm Lupus Luncheon speaker Send out Lupus Luncheon invita@ons Confirm Catering for Lupus Luncheon

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Prepare Learn to Love for Lupus Pocket Guide Distribute Learn to Love Pocket Guide Lupus Race for Life Design Race for Life media ma@erals

x x x

Send out Race for Life media ma@erals

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Contact corporate sponsors for race Print Race for Life T-­‐shirts Send out race registra@on

x x

Light on Lupus Contact Jerry Price Book Memorial Hall Confirm speaker Contact school clubs to promote Design and put up flyers Buy refreshments and raffle @ckets Inspire and Inform Buy baskets and supplies Write love notes Leap for Lupus Make reserva@on with skydiving company Design and send out media pitch Announce winner of raffle Healthy Habits Find loca@on Secure speakers Send out sign-­‐up sheet Study Sundays Reserve Library room Recruit volunteers Monthly Madness Plan ac@vity Talk to appropriate loca@on and people Internship Program Send out email blast to colleges Choose interns

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Budget

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Evaluation & Criteria Tactics Goal #1: Increase overall awareness of lupus by establishing a strong process for organization in Orange County.

• Establish a measure for the amount of followers, friends, and receivers of outgoing communications Lupus International’s pages receive using built-in site tools or Google Analytics • Track amounts of media exposure and keep clip book of all coverage received • Monitor amount of attendees and donations received through all events • Survey those with lupus that are active within the organization to determine effectiveness of planned activities and to receive suggestions for the future • Develop a focus group of Orange County students who attended events to highlight specific strengths and weaknesses Goal #2: Increase the number of volunteers and donors.

• Measure amount of interest in college internship program and amount of interns • Have volunteers fill out surveys to determine effectiveness of education sessions • Keep record of potential corporate sponsors contacted, and follow-up with calls • Determine amount of volunteers or connections received from promotional tables • Distribute surveys to college students at campus’s contacted in order to determine how much information was retained

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Part II

Communication Tactcics

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News Release Lupus International FOR IMMEDIATE RELEASE

Contact: Christina Kelly Telephone :949-278-1646 Email: ckelly1121@aol.com

LUPUS INTERNATIONAL GIVES HOPE TO HUNDREDS OF ORANGE COUNTY STUDENTS Irvine, Calif. (January 1, 2013)—More than 800 children and young adults in Southern California have lupus—a chronic autoimmune disorder that causes the immune system to attack its own cells and tissues. It can manifest itself through a variety of symptoms, impacting the every day lives of those with lupus.

Lupus International has developed a scholarship program to assist the many young people with lupus by making attending college or trade school an easier reality. The program helps to pay for books and materials, transportation and parking, meal cards, and gym memberships.

“Everyone deserves the chance for an education, and for those with lupus sometimes the stress and demands of school are overwhelming. We strive to help manage this so no lupus student has a lack of opportunities,” said Christina Kelly, executive director of Lupus International.

Over 150 students take advantage of this program. Amanda Rice, a sophomore at Saddleback Community College, credits her scholarship for giving her the strength to keep attending. “College can be very physically demanding and stressful, never mind dealing with lupus on top of that. The relief I receive from the funds and extra help to keep healthy makes college a possibility.”

Lupus International, located in Irvine, Calif., provides the latest lupus news and information, research, and practical information to manage the illness. It also supports the funding of research programs.

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Key Public: People directly impacted by lupus or those who would like financially support this cause Secondary Publics: Caring others—the family members of those diagnosed with lupus who share their struggles Action Desired From Publics: Increased awareness of programs and Lupus International.

Interests to Key Publics: Key publics are interested in ways to make living with lupus easier Overriding Message/Theme: Lupus International offers a unique scholarship program Primary Message #1: An overwhelming number of schoolaged students have lupus in Southern California This can be supported through statistics.

Primary Message #2: Lupus International’s scholarship program makes a real impact for students with lupus. This can be supported through personal testimonies.

Primary Message #3: Lupus International is a credible, well-established organization. This can be supported through a brief history and description of the organization’s successes.

Description of Photos/Graphics: Include lupus International logo How to Use Third-party Influentials: Testimonials from Christina Kelly and a scholarship recipient Slogan/Tagline: Light on Lupus Specific Media to Receive Information: Local Southern California newspapers Proposed Follow-Up With Media: Possible feature story expanding on personal testimonies

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Feature Article Lupus Race for Life Shines a Light on Lupus La Mirada, Calif. Oct. 23 – More than 2,500 people participated in the largest Race for Lupus in the U.S. Sat., Oct. 21 at La Mirada Regional Park.

This year’s race, which raised more than $18,000 for lupus research and support, was dedicated to the memory of Lorenzo Solis, a young man who was killed by this disease.

The Solis family has been involved with Lupus International since its founding.

“Lorenzo always had a smile, was there when you needed, and left a lasting footprint in the lives of those he met,” said Executive Director Christina Kelly.

Popular radio personality Shawn Parr was deejay at the event and kept people enthusiastic to run or walk for lupus.

Many friends and family members participated in this event to commemorate a loved one lost to Lupus. The cost to participate was $26 per person, but many went beyond this and fundraised by encouraging friends and families to donate or make pledges.

The Los Angeles Sherriff Department has been very involved in the Race since its inception 13 years ago. LA Sherriff Lee Baca has participated in each of them. Peace officers, fire fighters, and other law enforcement make up a huge percentage of volunteers each year.

Cacique and Jox Market donated and hosted a delicious pancake breakfast that included chorizo, eggs, and quesadillas. Each participant also received a Race for Lupus t-shirt. Children participated in a 1K race, and winners of the 1k and 5k race were announced at the end of the event.

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Social Media The use of social media is crucial to raise awareness for most organizations during this time and age. It is extremely important for Lupus International to have a strong presence on the web because this is where the public is able to learn about the disease and find ways to get involved. Through our research we found that the need for a large presence on social media sites such as Facebook, Twitter and Youtube is growing because it is a main way to receive donations, spread awareness, and keep key publics informed.

Social Media Copy Outline Key publics: Caring Others, Lupus Patients, Helping Hands Action desired from public(s): To like the “Light on Lupus�

Facebook page and follow @LightonLupus on Twitter in order to become involved with Lupus International Self Interests to Key Public(s): To actively supports those lupus patients and those affected by lupus. Lupus International has the ability to raise funds or directly help at events Overriding message/theme: Hear Their Stories. Ask Your Questions. Shine Light On Lupus.

Primary Message #1: 2 million Americans suffer from Lupus and 16,000 more are diagnosed each year. Social media allows ways for people to learn about how to get involved and to become knowledge about the disease.

How to Support the Primary message: Event invites, daily lupus facts, website URLS, personal testimonies from lupus patients and families Description of Photos/Graphics: The Lupus International logo and photos from recent Lupus Race for Life events and other special events as they come up.

Third-party influentials and how they will be used (testimonials, quotes, photos, etc.): Provide celebrity endorsement on the Facebook and Twitter page. Get the media to follow all social media accounts so that they can post statuses and updates promoting the pages.

Slogan or tagline if any: Light on Lupus

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Special Event Media Alert MEDIA ADVISORY

Lupus International

Christina Kelly Phone: 949.278.1646 Email: ckelly1121@aol.com

FOR IMMEDIATE RELEASE Lupus Race for Life

Lupus International hosts 14th annual walk, will provide live entertainment and breakfast HUNTINGTON BEACH, CALIF – Lupus International will host the 14th annual Lupus Race for Life in order to raise awareness for lupus on Sunday, October 27, 2013 from 10:00 a.m. to 1:30 p.m.

Register for the walk with a donation of $26, which includes a complimentary t-shirt.

After the 5k run, the event guests can enjoy live entertainment and a delicious pancake breakfast cooked by Orange County’s own policemen.

Since more than 1.5 million Americans suffer from Lupus, an autoimmune disease that has no cure, this event is an important opportunity to raise awareness and meet people who have come together to actively take a stance and run for those they know with Lupus.

All ages are invited to Race for Lupus. Sign up for the race at: www.LupusInternational.com or contact Christina Kelly.

Who: Lupus International, Lupus International Volunteers and Donors What: 5k walk/run that includes a free t-shirt and pancake breakfast.

When: Sunday, October 27, 2013 10:00 a.m. – 1:30 p.m.

Where: Huntington Central Park Huntington Beach, CA RSVP: Online at LupusInternational.com OR Christina Kelly Phone: 949.278.1646 Email: ckelly1121@aol.com Facebook: Lupus International Twitter: @LightonLupus

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Media Email Pitch

Key Public(s): The media pitch is aimed to gain coverage and reach donors, volunteers, and caring others.

Action Desired from public(s): To participate in the Lupus Race for Life and become involved with the organization through volunteer work, donations, and promotion/support to shine light on lupus.

Self Interests to Key Public(s): Donors and volunteers have an opportunity to actively participate in a cause they deeply care about supporting. Caring others will be able to show support for their loved ones through participating in the race, exemplifying their devotion and support.

Primary Message: More than 1.5 million Americans suffer from lupus and 16,000 more are diagnosed every year. Given the amount of people with lupus, it’s a disease that remains far too unnoticed.

Specific Media to Receive Information: Local print publications—traditional print, online news sites, online broadcast sites, bloggers, calendar sections (OC Register, Orange Coast Magazine, The Huntington Beach Wave, The Newport Independent, OC Metro, University newspapers, etc.)

Proposed Follow-Up With Media: After distributing the media email pitch, I will followup with the media through a phone call. For media contributing to pre/post coverage, I will follow-up via email to check their current status and see if they need any further assistance.

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Advertisement Key Publics: Many people are diagnosed with lupus in early adulthood, and the ad is aimed to focus on young adults because that public in particular tends to be full of “thrill-seekers.” The key public is anyone who wants to actively participate in supporting a cause they care about in a fun and thrilling way— this could be donors, caring others, or lupus patients themselves.

Secondary Publics: The public at large—skydiving is one of the most sought after activities for males and females of any age, and it’s an outlet for people unfamiliar with the disease to become aware while also knocking off an item on their bucket list!

Action Desired From Publics: To buy skydiving tickets and “Leap for Lupus,” hopefully leading to further awareness of the disease and raising funds for lupus support and research.

Self Interests to Key Public(s): It’s a fun, exciting, and life changing experience for lupus patients, donors, and caring others to support the cause.

It’s a personal self-interest that also raises funds in a unique and exciting way. With the public at large and young adults as a secondary audience, skydiving is an adrenaline rush of a lifetime, and an activity that is highly appealing to that audience—ultimately through their purchase they would not only have the experience of their lives, but further help a cause that is not on most people’s radar.

Overriding Message/Theme: Lupus Awareness Primary Message #1: Raise funds for lupus research and support Primary Message #2: Increase lupus awareness How to Dupport the Primary Messages: The message is supported through the appeal of skydiving and proactive involvement for an often- neglected cause.

Description of Photos/Graphics: A skydiver approaching the ground with a massive purple parachute—the color for lupus and our campaign.

Slogan/Tagline: “Leap For Lupus” ...."Take a leap of faith...a leap for lupus” Production Deadline: December 1 so purchases can be made as holiday gifts, and have plenty of time to distribute to various media outlets to create buzz before the offer begins.

Specific Media to Receive Information: San Diego/Orange County/LA newspapers and magazines—OC Register, LA Times, U-T San Diego, Orange Coast, OC Metro, North Coast Times, LA's the Place Proposed Follow-Up With Media: Invite media to participate for half the cost as a way to promote the opportunity and gain coverage.

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Direct Mail Piece

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Newsletter (Pages 25-28) Key Public(s): Lupus patients, “caring others,” donors/volunteers Secondary Public(s): General public at large—people who are susceptible to lupus, newly diagnosed patients, doctors/medical field personnel.

Action Desired From Public(s): To educate and become more aware of lupus news/updates, feel a sense of comfort through relatable stories, patients to live life to its fullest, caring others to understand.

Self Interests to Key Public(s): Readers will know they’re not alone and have a sense of optimism regarding lupus news and progress.

Overriding Message/Theme: Shining light on lupus Primary Message #1: Lupus news and progress to convey a sense of optimism How to Support the Primary Message: Through including data/facts of news articles and documenting the progress of lupus research.

Primary Message #2: You’re not alone—whether you’re a patient, donor, or caring other.

How to Support the Primary Message: Sharing testimonials, personal stories, advice, etc. that each reader can relate to Primary Message #3: Spread lupus awareness How to Support the Primary Message: Sections such as “International Voices,” share national and global stories of patients or donors spreading the word and taking action (ex: “Helping Hands Spotlight” section).

Description of Photos/Graphics: Photos vary—for each section and article, there's a photo to accompany the story and show what’s being done.

Slogan/Tagline: “Lupus Lowdown: Shining light on lupus since 1983.” The newsletter also contains a mission statement.

Production Deadline: The 25th of each month in order to distribute the newsletter by the first of the following month.

Production Quantity: This depends on the number of subscribers who wish to receive the newsletter. It could be thousands, if volunteers register at events, they will also receive the newsletter.

Means of Distribution: Option to receive in the mail or through electronic PDFs, also an available download online.

THE LUPUS LOW-DOWN “Shining Light on Lupus Around the World Since 1982”

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Poster / Flyer Key Public(s): College students and adolescents Secondary Publics: Lupus patients, caring others, volunteers, medical field personnel Action Desired From Public(s): Most Chapman students have heard of the disease, but not everyone knows what it is or how multifaceted it is. The flyer aims to get Chapman students to attend a meeting/discussion on the disease, luring them in through the slogan “Secret’s Out”—most students who see this would instantaneously want to know what that secret is.

Self Interests to Key Public(s): Students would want to attend the meeting because it’s a disease that they’re more prone to than anyone else. They will want to attend the meeting so they can become educated and aware, hear patients’ stories, and ask their questions— ultimately, an outlet for their voice to be heard. They’ll also have a chance to buy raffle tickets to go along with the “Leap for Lupus” skydiving opportunity.

Overriding Message/Theme: Light On Lupus Primary Message #1: Learn about a disease that could unknowingly be effecting you.

Primary Message #2: Get involved and take a proactive stance on Lupus.

How to Support the Primary Messages: Through enticing language that lures the audience in, free food, a chance to voice their questions, and a skydiving raffle.

Slogan/Tagline: “Secret’s Out.” Production Deadline: January 15 Production Quantity: 200 Means of Distribution: Hang flyers/posters on Chapman campus, pitch to student publications and clubs, endorse student ambassadors to hand out flyers to friends and peers.

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Radio Spot 15 Second Radio Spot Featured On: Christian Radio Stations: -The Fish 95.9 -KWVE 107.9 Family stations: -CBS Radio 97.1 -Power 105.9 Spot: To fund lupus research and support their programs, Lupus International is hosting its 14th Annual Lupus Race for Life on Saturday, October 27th, at the Huntington Central Park. Come learn more about the silent disease that could be affecting you. Hear their stories. Ask your questions. Shine light on lupus.

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Press Kit We want to create a memorable and informational press kit.

Including educational information is key because many members of the press may not know about lupus and would be more apt to cover the it if they have a basic understanding of the illness.

Include: • Organization Fact Sheet • Informational Brochure • Executive Director Bio • Event invitation

Include a small, token flashlight keychain, engraved with, “Light on Lupus.”

You're Cordially Invited to the First Light on Lupus Night Lupus impacts more than 1.5 million people in the United States and over 5 million internationally. Despite this, many people are unaware of the prevalence, symptoms, and impact of lupus.

Help us put lupus in the spotlight with our first "Light on Lupus" event March 17th at Chapman University’s Memorial Hall. We will educate, inform, and interact with students to raise awareness for lupus.

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Part III

Appendix

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Original Research: Executive Interview Interview with Christina Kelly, Executive Director of Lupus International How does your organization function/what's daily work like?

I would say that for most nonprofits, daily work will really vary…it really depends. At this particular time we're very event-concentrated, so we're working on the events. When we finish our events we're very program concentrated, so it really varies. It's a lot of phone calls and it's a lot of meeting with people who have lupus, and donors, and supporters….really good donor maintenance and maintaining those relationships is really a key function to succeed.

What problems/issues are you facing? What's the biggest?

From a PR standpoint, getting our name out there--there's a lot of other competing organizations with people with PR experience on their boards, and a couple of them use actual PR companies, so they're able to get greater press.

What are your goals and objectives for the near future and long-term?

I would really like to improve our identity in the lupus community and create an emphasis on the pediatric programs we do and the scholarship programs we do. I'd also like to have our two main special events expanded.

Who are your key publics today?

As far as programs are concerned, our demographic would be lupus patients in general. We've been emphasizing a lot on pediatric programs, but with regard to events, we focus a lot on runners and law enforcement and fire personnel for the Race. For the Evening With Bill Medley concert, it's really just wealthy donors. It's unique for an organization to have an event that's not really connected to the disease--they just think we throw a great party and they'll spend a lot of money to go to it.

What makes your organization international? Do you have international offices or staff? What are your international goals?

We don't have international offices, but what makes us international is that in the past we've done large-scale webcasts, and we didn't realize at the time, but we were servicing India, Turkey, Germany, Japan….our depth expanded mostly because of our name. The name change came about 15 years ago when we all used to be called Lupus Foundation of America (LFA), Southern California Chapter, in our case.

We were funding our operations on our own and we didn't receive any assistance from the affiliation. LFA kept asking for money and it was kind of to the point where we weren't getting any services for it, so it made no sense. We weren't the only organization, there were 15 other organizations that decided they would disaffiliate and go on their own. We reach, especially in Southern California, diverse nationality population. We wanted a name that didn't confine us to California, so we went with Lupus International, because we do have such a diverse population.

Who do you feel are your biggest competitors and what sets you apart from them?

LFA and Lupus LA would be the two biggest competitors. What separates us from them is, that we actually do--a program that we created—called Pocket Relief, and it's for students who have lupus.

We help them with their school materials--books, lab fees. We will assist school-aged kids and high school students with back to school supplies. But, predominantly it's mostly college kids for trade schools and universities, and none of the other programs do that. We also offer pediatric support groups. The other interesting thing about our organization that's very different, and not publicized, is that we don't turn anybody away from assisting them or giving them books or supporting them--we don't worry about what zip code your in, and a lot of the other organizations really worry about if you're in their area. If you are in their area, they’re great and will help you tremendously, but if you're not in that group, they're not so helpful.

That's one of our strengths.

What are strengths and weaknesses of the organization?

We will work with anyone, there are no boundaries. We've been in the community for a long time, we work with events, like the Bill Medley concert, which is completely underwritten--100% goes back to organization. For the Race, we only have to pay for the t-shirts and everything else is underwritten. From a fundraising perspective that's very unique, most organizations don't do that and our competitors can't do that. We also are the only ones that really work with kids, and so that would be a big plus.

Our weakness is that we have competitors with very large PR budgets so we get swallowed up fairly quickly. Like Lupus LA, who works with an actual PR firm.

What strategies have you tried that have not worked, why do you think they didn’t work?

We used to be able to--before the television rules and requirements changed--we used to be able to get commercials and PSAs and videos. But, we found that these are very hard to get on the air without paying for airtime… election years are notoriously hard to get press because it's all about the election.

What is your structure of your organization?

I'm the only paid staff as the executive director. Otherwise we have medical people who volunteer, we have our board who volunteers, and we hundreds of other volunteers who make our programs and events work. On an annual basis, we probably have about 400 volunteers.

How would you describe your image, and would you like to change this in any way?

A negative image is that we're considered very small, and the positive image would be that we're always there for people. We'd really like to strengthen the image that we have the successful programs we offer, especially the scholarship program…I see that as the program of the future. I don't think we should continue to try to compete for the recognition and the research and the fellowship area, because the other groups are doing that and they're doing it well. I think we should differentiate ourselves and really focus on these scholarships because in Southern California, there's over 800 kids who have lupus. So that's 800 kids who will potentially go to college or trade school, and this particular program we offer, it pays for the books and materials, the transportation and parking, but we also give them meal cards because a lot of them have kidney disease. We also pay for them to have exercise equipment or gym memberships, whatever works with their physical capacity to get exercise. No one else takes that and does that, and I think that's how we can best identify ourselves.

How would you evaluate your current/past media relations? Have you been able to successfully gain publicity?

We've always had good media relationships. We've always been very close with the various news stations, we've done radio…we've always been pretty weak on print, but we've done more with the other mediums (stations: 2479, channel 13 air PSAs)…. Print's always been a challenge, lupus isn't something very many papers, at least down here in Orange County, or even the LA Times, seem to be interested in. We've done very well with stories--two girls, actually my daughter and my niece, who run the lupus race and do a bake sale.

We had ABC come down one year and cover the bake sale, we raised $800-$1000. We also do, with the LA county swat team, an annual demonstration on Fox for the Lupus Race…(waiting to get confirmation for this year's event) What are the primary channels of communication used to reach your key publics?

We stick to direct mailing, a maximum of 1-2 a year. We also do a lot of email campaigns--not an official newsletter, but bulletins, requests.

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Original Research: Patient Interviews Interviews with Lupus Patients

Natalie Bracken, mother

Bill Huber, father

When were you first diagnosed with lupus, how did it come about?

I think I was diagnosed in 1992, so I was about 35, but from the time I was in my mid-to-late 20s I started having all of these undiagnosed medical issues. I don't recall the exact symptoms but as I recall I was having some muscle aches, knots in my back, and depression.

When were you first diagnosed with lupus, how did it come about?

I believe that I may have been predisposed to immune issues from my mother's medical history of fibromyalgia. In 1987, I was in a major car accident, where my body went thru severe trauma. I believe it was that shock that triggered the on set of my lupus. I started feeling the symptoms of fatigue and joint pains in the summer of 1988. I had no idea what was going on. I was living in Lima, Peru at that time and was not diagnosed until I returned to the United States. Even then in 1989, the tools to diagnose lupus were not developed like they are now. As a result I was not diagnosed until 1990.

What were your initial thoughts?

I was confused, frustrated, fatigued and very depressed.

How did you learn to cope with lupus?

I learned to cope with the support of my family. This is very important.

What is an average day for you living with lupus?

I have to be very aware that as a result my physical activities must be limited. I have to be careful with my balance, as with lupus there is a decrease in bone density. It is imperative that I take my medications daily.

How has it affected your personal life?

If it were not for my wife, I probably would be in a wheel chair or had completed suicide. I can handle the pain, but it is the depression that really brings me the problems. For a while I would even self-medicate by drinking a lot. This only made things worse because it affected my relationship with my family and job.

How has it affected your workday?

It is a daily struggle. When I wake up I just want to roll over and go back to sleep and forget about the cold sweats at night and constantly having to change positions due to the discomfort.

Have you used Lupus International or heard of it?

I have never used them, but have made donations.

Have you used other lupus support groups, how have they benefited you?

I have never used any support group, as of yet.

What do you wish other people knew about lupus?

Simply to understand that it is a serious chronic condition and eventually cripples.

As a support group, what do you think would be the most important thing to do for someone with lupus?

Comfort, support and reassurance that life has meaning and should continue.

If you would like to comment on anything else please feel free to add: Keep pushing forward for awareness. I remember at one point I was going to be denied health coverage because of my pre-existing condition.

No Longer.

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Left: Bill Huber and family Right: Natalie Bracken and her husband

What were your initial thoughts?

I thought I was going to die. I was very scared and got depressed as I went through it. I also felt sorry for myself. I was told I had SLE lupus.

How did you learn to cope with lupus?

For a number of years I did not cope. Finally I realized I had to accept it because I didn't have a choice. I read a lot about it, but the more I read, the more desperate I felt.

What is an average day for you living with lupus?

Every day I am in pain. The only thing that varies is how much pain I'm in. Much of the pain is from arthritis, which is in my neck, back and knees. I have been on more than 20 kinds of prescriptions, including the strongest pain management pills a doctor can prescribe, but it is difficult to take so many pills in one day. I have had both knees replaced, a rod in my spine and one in my neck. I’ve had severe hair loss, dry mouth, trouble swallowing, scabs and sores all of my body (including inside of my mouth, on my scalp…covering my arms, legs, face), loss of memory, and my immune system is very ineffective. After having a simple surgery procedure done two years ago, I had a fever after and was rushed to the emergency room. I ended up dying, momentarily, until I was revived— they didn't think I'd make it and I was in a drug-induced coma for two weeks, with a ventilator and life support because my body wasn't strong enough to live, breathe, and eat on its own.

How has it affected your personal life?

It has taken over my life. My daily activities are limited by how well I feel and whether I can even walk on a given day. Sometimes I push to do more but when I do I pay for it in the end. Still, it's worth it because I can get my mind elsewhere and actually enjoy myself for change.

Have you used Lupus International, how has it benefited you?

Yes I have used their website to get more information about lupus. I've been able to educate myself about the disease to better understand what's going on. It also helps me realize I'm not alone and that other people are suffering with the same disease.

What do you wish other people knew about lupus?

I wish other people knew how debilitating lupus can be. I also wish my friends and family understood what I've been through and how many surgeries I've had to have as a result of this disease. They should also know that in spite of all this I'm still happy to be here.

As a support group, what do you think would be the most important thing to do for someone with lupus?

Help them to know that they are not alone. There is great comfort in finding out that other people are suffering with the same thing as you.

If you would like to comment on anything else please feel free to: I am still happy to be here every day. I've been happily married for 34 years and love my husband and my children. Because of my family, my life is fulfilled. I also love my dogs! They make me very happy and are great therapy.

When you keep getting more things going wrong, and more bad news, no one understands how disappointing and upsetting it is… It's so difficult for me, and hopeless, you start to feel like no believes you and sometimes that your family doesn't care. The disease is constant without a break of bad things happening that no one understands, but it's very difficult for them to understand unless they've been through it or know how life-altering lupus can be.

Original Research: Board Member Interview Interview with Lupus International Board Member

Mary Weyland, Interim Chair Board Member of Lupus International How did you become a board member?

Originally someone asked me to help out by answering telephone calls and sending out materials. Lupus International used to operate out of a persons house.

How many people are on the board?

There a half dozen people on the board. It is very small and some are actually inactive because they themselves have lupus. That's one problem. People who volunteer are often people who are not well and have to take a leave of absence.

What is your job as a board member?

We support the program; the director generally is the one who plans the program for the year.

We have two main events, the Bill Medley concert and auction, and the Lupus Race for Life.

Also, every two years there is a symposium. There is one this year and it is conducted by medical doctors that specialize in lupus.

Our mission is to help supply direction and support the director and staff. We want to help raise funds and be active at the events and encourage people to donate to the organization.

Do you believe that the Board is too small?

I don’t personally believe the board needs more members. The board has been larger in the past but 5-7 people is a good size. However, I would love to see a medical doctor as our chairman.

What are strengths and weaknesses of the organization?

A strength is that the organization has been operating for quite a long time. The people who are in involved are extremely knowledge and understand the challenges of the illness. One of our recent programs that we are in the middle of launching is our Pocket Relief program. We support young people who have lupus. Lupus can be diagnosed at a young age and those are generally are teenagers. We don't try to pay their tuition to college but we try to support their needs by providing book or bus money.

We developed this over the last year and it definitely has the opportunity to expand.

One weakness is that lupus is a chronic disease that has no cure and people who have it often do not look ill. That's always been the problem with lupus. You probably know people yourself who have lupus, but they don’t say it or look like it.

It is one of the very few diseases that has no specific medication. Only one medication came out recently, but all the treatments have been borrowed from another illness.

There is a huge opportunity to fundraise for research! Finding donors who have a passion for lupus, aka Congressmen, CEOs, who have a family member who has lupus, those are the people that are going to donate to find a cure.

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Original Research: Lupus Survey We distributed the following survey to understand how students perceived lupus and the amount of awareness that they had on the subject. We surveyed 123 college students.

Circle: Gender: Male Female

Year:

Freshmen

Sophomore Junior

Age: 1. Have you heard of Lupus?

Senior

Our results indicated several interesting findings...

2. What do you know about Lupus, if anything?

3. Do you know anyone with Lupus?

First, we found that 25% of college students had never heard of lupus.

Of those who had heard of lupus, only 18% actually knew what lupus is and could explain any symptoms or indicators.

These results indicate there is a great need to spread awareness and understanding. There is clearly a problem when only 14% of our sample size had heard of lupus and could explain the very basics of the disease.

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Preliminary Identification of Publics 1. Loved ones of those with lupus ("Caring Others") 2. Young women 4. Pediatricians/doctors 5. Men with lupus 6. College students with lupus 7. Newly Diagnosed 8. Children with lupus 9. Parents with lupus 10. African Americans w/ lupus (unique studies show they’re more prone/react differently) Key Public Profile: 1. Caring Others (family, friends, colleagues of those with lupus) An entire section of Lupus International’s website is devoted to “Caring Others,” referring to all possible people who may know someone with lupus and want to learn how to best support them. This key public includes the family, friends, and colleagues of those with lupus because nearly 2 million Americans suffer from lupus. This particular key public is essential to our campaign because “Caring Others” strive to understand how to best help their loved ones, and lupus is an extremely multifaceted disease that requires immeasurable amounts of knowledge to understand if you have not personally suffered the disease.

Though “Caring Others,” are likely aware of the disease, many are unaware of how life-altering it can be. For instance, a teenager’s heart might be broken because her mother cannot take her shopping for a prom dress since her joints hurt too badly. A six-year old boy might be angry at his father for forgetting to go to his baseball game, unaware that memory-loss is a common side effect of the disease. A boss might get frustrated because his “sick” employee did not turn in an assignment on time, but simply because the employee looks fine, it still does not mean he or she feels fine. Lupus International strives to push lupus patients to live their lives to fullest, to be happy and free, but this can be nearly impossible if the people surrounding them do not understand the challenges they are facing.

Self-Interests: To receive information how to best care for their loved one(s), become more educated and interested in the disease, get involved to curing a loved one, develop stronger and more understanding relationships, learn to deal with inevitable resentments and frustrations, take opportunity to discuss and relate with others, and ask questions and receive answers.

Influentials: Members and leaders of the organization, lupus patients who are apart of their (Caring Others) lives, doctors, others who can relate (caring others who share their stories about how Lupus International helped them), community leaders, teachers and professors, and other family members/friends.

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Preliminary Identification of Publics Key Public Profile: 2. Newly Diagnosed Patients People recently diagnosed with lupus are an important key public for Lupus International because they will be the ones most in need of the information that the organization has available. Lupus develops, on average, between the ages of 15 and 44, so this covers a wide demographic. There are children who also suffer this disease. When this disease develops, it causes antibodies created by the immune system to destroy germs, bacteria, and viruses. It also destroys a person’s healthy tissues. When this disease is developed, it causes inflammation, pain, and damage to various parts of the body that were not experienced before.

Lupus International’s website focuses a great deal on the emotional aspects of having just been diagnosed with lupus. Because it is a rare disease, most people do not know what a person diagnosed with lupus is going through emotionally. Under the Living with Lupus tab, there is a section dedication to the newly diagnosed, which focuses on how acceptance of the chronic illness a difficult but important part of moving on.

Self-Interest: They desire to learn about the disease, the restrictions it causes on their lives, the mechanisms through which it occurs, current and potential treatments, and most importantly, how to cope with the disease.

Part of Lupus International’s mission statement is, “to alleviate suffering and improve prognosis for children, women and men afflicted with lupus by providing information and support.” Newly diagnosed people are in need of just that – information and support.

Influentials: This group would be others diagnosed with lupus who already use Lupus International’s services, as well as doctors who specialize in lupus or who gave the diagnosis. Lupus International could benefit from a celebrity serving as an influential to the newly diagnosed by acting as the face of lupus support.

Key Public Profile: 3. Young Women Young women are perhaps the most important key public because 90 percent of people diagnosed with lupus are women between the ages of 15 and 45. Lupus is also more common in Asian, Native American and Latina women. In addition, two thirds of people who have lupus before puberty and after the age of 50 are women.

Women who have lupus also have an increased chance of having other medical problems such as heart disease, osteoporosis and kidney disease.

They are 50 times more likely to have chest pain or a heart attack.

Self-Interest: Stay updated on information involving advances in research, treatment and major fundraisers. Learning to live with the disease, learning to teach others how to empathize with a loved one that has the disease.

Influentials: Organization leaders, other lupus patients, doctors, family members and loved ones.

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Preliminary Identification of Publics Public Profile: 4. Men With Lupus This public includes the group of lupus patients that are often overlooked because of their gender. Lupus is predominately a disease infecting females. About 90 percent of lupus patients between the ages of 15 and 45 are women. After the age of 50, however, the percentage of women with lupus falls to 75 percent and the percentage of men with the disease rises to 25 percent.

Some studies have found that there is more severe kidney, nerve and blood vessel disease in men with lupus than in women with the disease. Men with lupus often do not seek out support groups or talk openly about their disease because of the female dominance with lupus. Because of this, men with lupus may feel more isolated, especially because so much of the literature is targeted toward women. Lupus International has posted two articles on its website, targeting men with lupus using the title, “Real Men Get Lupus.”

These articles are highly scientific in nature, and while they do point out the prevalence of lupus, especially in older men, it doesn’t offer anything as a support system.

Self-Interest: Finding information linking lupus to men, and information detailing specific issues that men with lupus may face.

They may also want a support system or group so they can engage with other men of this small, yet important, group.

Influentials: Organization leaders and marketers, other lupus patients, support groups, family members of those with lupus.

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Preliminary Identification of Publics Public Profile: 5. Children With Lupus Somewhere between 5,000 and 10,000 U.S. children under the age of 18 have lupus. This is an important key public to reach because learning to cope with lupus at a young age can be very difficult. Nearly 80 percent of children diagnosed with lupus are girls.

Symptoms in children are similar to symptoms in adults, the most common being fatigue and achiness.

Other symptoms include fever, butterfly rash and kidney involvement. Once diagnosed, depending on the needs of the child, a treatment plan is made. It includes a team of health specialists, ways to control flares, and medication.

Self-Interest: Children with lupus are typically concerned whether they are able to join activities, keep up and play with their friends, and what others will think of them. For example, young children may think, “I can catch his lupus.” This is a common misconception, unfortunately, even among adults.

Appearance is also a main factor, since some drugs used to treat lupus have side effects such as weight gain and acne. The process of growing up makes children very vulnerable, and dealing with an incurable illness can be very traumatic.

Influentials: Social media like Twitter and Facebook, celebrities with lupus like Cori Broadus (Snoop Dogg’s daughter), Seal, Toni Braxton, and Lady Gaga, schools, and parents with children who have lupus.

Public Profile: 6. Parents With Lupus Although it may seem younger generations have a harder time coping with lupus because they do not understand the disease, parents with lupus are also facing a hard battle. Most parents feel they need to be strong for their family and not have any type of fear because it will make them look weak.

Parents with lupus feel they must put on a strong face at all times.

Moms and dads with lupus often find keeping up with their kids' activities challenging, and it can get tougher around holidays. The impact of the diagnosis affects every family member. Most parents feel guilt and believe they cannot carry the weight of their family.

Self-Interest: Parents with lupus need to know that they are being supported and do not always need to be the ones trying to stay strong for their families. Support groups and counselors would be beneficial to these parents to show that they are not in this battle alone. This would be an encouraging way to motivate this specific public to use Lupus Internationals services. Also, informational sessions for the whole family to attend would be key because it would allow every member to be aware of the systems and treatment necessary.

Influentials: Bloggers who encourage and motivate parents, support groups, celebrities who have children and can tell their lupus testimony.

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Research Bibliography “5K Run & Walk for lupus in Saratoga,” NBC Bay Area, June 4, 2012: <http:/ /www.nbcbayarea.com/video/#!/news/local/5K-Run---Walk-for-Lupus-inSaratoga/156980205> “About Us.” http://www.lupusinternational.com/About-Us/Mission-Vision.aspx. 12 Sept. 2012 Alliance for Lupus Research. N.p., n.d. Web. 12 Sept. 2012. <http://www.lupusresearch.org/>.

American Cancer Society. Web. <http://morebirthdays.com/> Associacao de Doentes com Lupus. N.p., n.d. Web. 12 Sept. 2012. <http://www.lupus.pt/>.

Asociaciona Lupus Argentina. N.p., n.d. Web. 12 Sept. 2012. <http://www.alua.org.ar/>.

Association Lupus Erythémateux. N.p., n.d. Web. 12 Sept. 2012. <http://www.lupus.be/>.

Bracken, Natalie. "Lupus Patient Interview." Personal interview. 10 Oct. 2012.

California. Secretary of the Senate. Bill Number: SCR 99. By Tony Strickland. N.p., 02 Aug. 2010. Web. 8 Oct. 2012. <http://www.leginfo.ca.gov/pub/09-10/bill/sen/sb_0051-0100/scr_99_bill_20100802_amended_asm_ v98.html>.

CaringBridge. Web. <http://www.caringbridge.org/> Coker, Matt. "Fighting Lupus and Cancer Starts with Your Feet in Irvine." OC Weekly Blogs. N.p., 01 06 2009. Web. 11 Sep 2012. <http:// blogs.ocweekly.com/navelgazing/a-clockwork-orange/fighting-lupus-andcancer-star/>.

“Could I Have Lupus.” Lupus International. Web. <http://www.couldihavelupus.gov/get-help-lupus-international. cfm>.

Dorsey, RR, EM Andresen, and TL Moore. "Health-Related Quality Of Life And Support Group Attendance For Patients With Systemic Lupus Erythematosus." Journal Of Clinical Rheumatology 10.1 (2004): 6-9. CINAHL Plus with Full Text. Web. 12 Sept. 2012.

“Drug regimen, food challenge,” San Francisco Chronicle, Aug. 21, 2012: <http://www.sfgate.com/default/article/Drug-regimen-food-challenge-lupuspatient-3805185.php> E-Cards Web. <http://donate.lupus.org/site/Ecard?ecard_id=1361&pw_id=1921> “Eliminate Disparities in Lupus.” Office of Minority Health & Health Disparities. 2012. Web. <http://www.cdc.gov/ omhd/amh/factsheets/lupus.htm > This website features Lupus statistics from the government about Lupus in the U.S. and how many people are affected.

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Research Bibliography Flickr Account. Web. <http://www.flickr.com/photos/lupusfoundationofamerica/sets/> Forgione, Mary. “Lupus drug Benlysta offers long awaited hope,” 10 March 2011. LA Times Online. Web. <http://articles.latimes.com/2011/mar/10/news/la-heb-benlysta-lupus-20110310>.

Hochberg, Marc. “The History of Lupus Erythematosus.” June 2003. <http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=1520&zoneid=9..>.

“Health coverage for Californians will look very differently come 2014,” CA HealthCare Foundation: Center for Health Reporting, Aug. 30, 2012: <http:// centerforhealthreporting.org/blog/health-coverage-calif> “Heart Disease May Impair Brain Power in Lupus,” Med Page Today, Sept. 1, 2012: <http://www.medpagetoday.com/Rheumatology/Lupus/34521> Huber, Bill. "Lupus Patient Interview." Personal interview. 10 Oct. 2012.

“It’s fire, not flour,” Variety, May 29, 2012: <http://www.variety.com/ article/VR1118054712?refCatId=16?> Kelly, Christina. "Executive Interview." Personal interview. 5 Oct. 2012.

Larsen, Steve. "Walk for Lupus Now at the Orange County Great Park."

Orange County Great Park. (2009): n. page. Web. 11 Sep. 2012. <http:// www.ocgp.org/2009/05/walk-for-lupus-now-at-great-park/S>.

“Life with Lupus.” Web. 2012. <http://www.lifewithlupus.org/> This organization is an entirely online support group for those affected by Lupus.

“Living With Lupus,” LA Times, 2012: <http://www.latimes.com/ videogallery/68803343/News/KTLA-Team-Lupus-L-A-What-is-Lupus-7am> LUISA (Lupus Inspired Advocacy). N.p., n.d. Web. 12 Sept. 2012. <http://www.luisaproject.org/index.php?option=com_ frontpage&Itemid=1>.

Lupus Alliance. 2012. Web. http://lupusalliance.org/ Lupus Canada. N.p., n.d. Web. 12 Sept. 2012. <http://www.lupuscanada.org/>. Lupus Lupus Care & Support. N.p., n.d. Web. 12 Sept. 2012. <http://www.lupussupport.org.nz/>.

Lupus Europe. N.p., n.d. Web. 12 Sept. 2012. <http://www.lupus-europe.org/lupus-europe/>.

Lupus Foundation Blog. Web. <http://lfa-inc.blogspot.com/> Lupus Now Magazine: Work With It. 12 Sept 2012. Web. <http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazinehome.aspx.> Lupus Foundation of America. 2012. Web. <http://www.lupus.org>

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Research Bibliography “The Lupus Foundation of America’s WALK FOR LUPUS NOW Turns Communities Across the Country Purple.” The Lupus Foundation. 18 Apr. 2012. Web. <http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutnews.aspx?articleid=4498&zoneid=571> Lupus International. Web. <http://lupusinternational.com> Lupus International. “About Us.” Web. <http://www.lupusinternational.com/> “Lupus International Urges Congress to Amend H.R. 6, the Energy Independence and Security Act of 2007,” 4 February 2008. Web. <http://www.prweb.com/releases/Lupus/HR_6/prweb677444.htm> “Lupus Organizations Unite to Stimulate Advances in Lupus Research.” Lupus Foundation of America. 31 May. 2012. <http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutnews.aspx?articleid=4562&zoneid=571> Lupus Research Institute. 2012. Web. <http://www.lupusresearchinstitute.org/> This is a institution which focuses primarily on Lupus research located in New York Lupus Voices of America. 2012. Web. <http://www.lupusvoices.org/> http://www.lupusvoices.org/ M. d’Estries. “Nick Cannon to host NYC Kidney Walk.” Mother Nature Network. 31 Aug. 2012. Web. <http://www.mnn. com/health/fitness-well-being/blogs/nick-cannon-to-host-nyc-kidney-walk> McCabe, Candy, et al. "'It's More Scary Not To Know': A Qualitative Study Exploring The Information Needs Of Patients With Systemic Lupus Erythematosus At The Time Of Diagnosis." Musculoskeletal Care 9.4 (2011): 228-238. CINAHL Plus with Full Text. Web. 12 Sept. 2012.

Mazzoni, D, and E Cicognani. "Social Support And Health In Patients With Systemic Lupus Erythematosus: A Literature Review." Lupus 20.11 (2011): 1117 1125. Academic Search Premier. Web. 12 Sept. 2012.

Mendelson, C. "Diagnosis: A Liminal State For Women Living With Lupus." Health Care For Women International 30.5 (2009): 390-407. CINAHL Plus with Full Text. Web. 12 Sept. 2012.

Mendelson, C. "Gentle Hugs: Internet Listservs As Sources Of Support For Women With Lupus." Advances In Nursing Science 26.4 (2003): 299-306. CINAHL Plus with Full Text. Web. 12 Sept. 2012.

Paget, Stephen. “Lupus Research, Medication, and Treatment: Past, Present, and Future.” Web. <http://www.hss.edu/conditions_lupus-research-medication-treatment.asp#6>.

“Pregnancy safe for most women with lupus,” CBS 8 San Diego, Nov. 7, 2011: <http://www.cbs8.com/story/15975380/pregnancy-safe-for-most-womenwith-lupus-study?clienttype=printable> Rae, Cynda. "Anybody with Lupus in Orange County." We Have Lupus.

N.p., n. d. Web. Web. 11 Sep. 2012. <http://forum.wehavelupus.com/ showthread.php?5349-anybody-with-lupus-in-orange-county-ca>.

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Research Bibliography “Removing roadblocks to patient care,” North County Times, Aug. 27, 2012: <http://www.nctimes.com/news/opinion/commentary/forumremoving-roadblocks-to-patient-care/article_c2ddc6ed-2d87-54c1-bc7479ea2b697633.html>/ "Saturday, June 12: Walk for Lupus Now in Orange County ." KTLA. N.p., n.d. Web. 11 Sep 2012. <http://www.ktla.com/ktla-lupusoc,0,518930.story>.

Senk, Amy. "CdM Woman Featured in Newly Launched Lupus Awareness Video." Orange County Register . n. page. Web. 11 Sep. 2012. <http:// www.ocregister.com/news/lupus-354543-hood-symptoms.html>.

“Stars to get Lucky for Lupus at Charity Poker Tournament.” Look to the Stars. 10 Sept. 2012. Web. <http://www.looktothestars.org/news/8910-stars-to-get-lucky-for-lupus-at-charity-poker-tournament> “Statistics on Lupus” Web. <http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60 >.

Terrean, Judy. "My Story." Walk for Lupus Now. N.p., n.d. Web. 11 Sep 2012. <http://donate.lupus.org/site/TR/Walk/General/446938018?

JServSessionIdr004=h1fwmmcp87.app214b&px=1457942&pg=personal&fr_ id=1465>.

Twitter Account. Web. <http://twitter.com/LupusOrg> "Walk for Lupus Now at the Orange County Great Park." PR Newswire.

N.p., 26 May. Web. 11 Sep 2012. <http://www.prnewswire.com/newsreleases/walk-for-lupus-nowtm-at-the-orange-county-great-park61966147.html>.

"Walker and Team Tools, Online Fundraising Tools." Walk for Lupus Now. N.p., n.d. Web. 11 Sep 2012. <http://donate.lupus.org/site/TR/Walk/General? sid=1080&type=fr_informational&pg=informational&fr_id=1465>.

Wilson, J. “Olympic soccer slayer Shannon Boxx’s battle with Lupus.” CNN. 16 Aug. 2012. Web. <http://www.cnn. com/2012/08/16/health/olympic-soccer-boxx-lupus/index.html> World Lupus Day. Web. <http://www.worldlupusday.org/> Weyland, Mary. "Board Member Interview." Personal Interview. Nov. 2012.

YouTube. Web. <http://www.youtube.com/user/LupusFoundation

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