Support Group Training Manual

Support Group Manual

2016

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TABLE OF CONTENTS Summary of the Alpha-1 Foundation............................................. Page 3 Mission Statement......................................................................... Page 3 Alpha-1 Foundation Support Groups ............................................ Page 4 Becoming a Support Group Leader .............................................. Page 5 Role of a Support Group Leader .................................................... Page 6 Benefits and Support Provided to Alpha-1 Foundation SGLs......... Page 7 Support Group Guidelines ............................................................ Page 8 Alpha-1 Foundation’s Website ...................................................... Page 8 Organizing a Support Group and Identifying Members ................. Page 9 Support Group Leader Protocol .................................................... Page 11 Meeting Planning ......................................................................... Page 12 Suggested Meeting Topics............................................................. Page 15 Communication ............................................................................ Page 17 Conducting a Meeting ................................................................... Page 18 Support Group Structure .............................................................. Page 20 Newsletter…………………………………………………………………………… Page 21 Serving as a Peer Guide ............................................................... Page 22 The Role of Industry ..................................................................... Page 23 Funding Requests for Support Group Meetings ............................ Page 24 Budget and Reporting .................................................................. Page 25 Support Group Forms ................................................................... Page 27 Community Outreach & Alpha-1 Advocacy.................................... Page 28 Fundraising: Building Friends for a Cure ...................................... Page 32 Alpha-1 Foundation Programs………………………………………………… Page 33 Alpha-1 Foundation’s History ...................................................... Page 36 Acknowledgements ...................................................................... Page 40 Resources .................................................................................... Page 41 E-Education Online Videos ............................................................ Page 43

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Alpha-1 Foundation The Alpha­1 Foundation Support Group Network is a collective of more than 80 affiliated support groups including four Virtual Support Groups (Alpha­1 Families, Caregivers, Pre and Post Transplant & Timely Topics). These groups are dedicated to providing support, education and information to people affected by Alpha­1 Antitrypsin Deficiency and to promote the mission of the Alpha­1 Foundation.

Support groups help people develop an enhanced, healthier sense of personal identity and a connection with the larger Alpha­1 Community.

Mission Statement

The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide.

The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three people diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1.

The Foundation has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), individuals affected by Alpha-1, and the pharmaceutical industry to expedite the development of improved therapies. The Foundation has invested nearly $60 million to support Alpha-1 Antitrypsin Deficiency research and programs at 103 institutions in North America, Europe, the Middle East and Australia.

The Foundation participates in industry and government liaison groups and develops strategic alliances with government, industry and other national and international health and research organizations.

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Alpha-1 Foundation Support Groups “To know that even one life has breathed easier because you have lived… this is to have succeeded.” - Ralph Waldo Emerson

A Support Group is generally a small, local voluntary group that comes together to provide mutual aid, education and support. Group activities involve accomplishing goals or identifying a special purpose to work toward such as awareness, advocacy and fundraising. Involved and invested medical professions can also be leaders in a Support Group. Group leaders emphasize face-to-face support for Alphas and their family members, caregivers and friends. As a Support Group Leader, you assume personal responsibility to enable those who attend to live a better and more informed life with Alpha-1.

There are many issues that face people and families affected by Alpha-1. A Support Group helps people see that having Alpha-1 is not a hopeless situation. Leaders help people develop an enhanced, healthier sense of personal identity and a connection with the larger Alpha-1 Community.

Every Alpha-1 Foundation Support Group abides by the same guidelines.

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Becoming a Support Group Leader

The Alpha-1 Foundation provides support to its community through a national network of Support Groups. We believe that knowledge is power. It is our intention to empower our community with knowledge, sharing and understanding.

Aspects of being a Support Group Leader: Provide education to help Alphas to understand their diagnosis Present options through guest speakers to adjust to lifestyle changes Inform attendees of the many Foundation resources and programs available Increase awareness of Alpha-1 Be involved in advocacy and public policy Fundraise for research for a cure through the Building Friends for a Cure program Serve as a Peer Guide for other Alphas, particularly newly-diagnosed Alphas The Foundation provides support and tools to help you be successful in improving your life and the lives of many others.

You serve a vital role in the Alpha-1 community.

The information in this manual is here to help you as a Support Group Leader. There are also many other resources available. The Foundation has a comprehensive website with information and education on Alpha-1 topics at www.alpha1.org.

Application for Support Group Leader status is made through the Support Group & Program Coordinator, who reviews and discusses the role and responsibilities with each candidate. The Director of Community Programs will also interview each candidate before final approval. Support Group Leaders are appointed based on these discussions, references obtained from within the Alpha-1 community and endorsement of Foundation Support Group Guidelines.

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Role of a Support Group Leader A support group needs strong leadership to survive. Support group leaders are responsible for planning and coordinating meetings, soliciting interesting speakers, communicating with local Alphas and our industry partners. Each leader should recruit at least one member of the support group as a co-leader to share responsibilities.

Specific duties include: Plan program and agenda for meetings Arrange meeting times and places Set up a meeting place conducive to a group discussion Arrange a meal or refreshments and request funding Conduct meetings, acknowledge and thank Foundation sponsors Serve as a peer guide and be an example to your group Create an environment that encourages sharing and acceptance Safeguard the confidentiality of personal contact information and shared information at all times within Foundation guidelines Abide by all guidelines developed by the Alpha-1 Foundation: Support Group Leader Guidelines, Industry Guidelines, Speaker Guidelines, Funding Request Guidelines and Confidentiality.

Each Support Group is required to hold four meetings per year. Additional support group meetings are encouraged to increase Alpha-1 awareness and/or fundraising events in your community.

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Benefits and Support Provided to Alpha-1 Foundation Support Group Leaders Alpha-1 Foundation Support Group Leaders receive these benefits: Referrals of local patients to their Support Group via a listing on our website; Clinical Resource Centers referring their Alpha-1 patients; AlphaNet Coordinators notifying their subscribers; and mailings of announcements and meeting notices to the Foundation mailing list.

Access to orientation, training and resource materials. One-to-one guidance in the establishment and operation of a Support Group.

The opportunity to participate in Support Group Leader training.

Access to training grants to attend the National Education Conference.

Resource and educational materials to distribute at Support Groups meetings, as well as electronic communications.

Participation in Support Group Monthly Telecalls with guest speakers and the ability to network with other Support Group Leaders and share ideas.

The opportunity to participate in planning Education days in their region.

Authorization to use the name and logo of the Foundation on meeting notices, newsletters, business cards and other materials of the Support Group, with prior approval. Access to the SGL Intranet, which contains information, data and forms to operate a support group efficiently.

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Support Group Guidelines The Community Engagement Committee of the Alpha-1 Foundation, consisting of experienced support group leaders and Foundation personnel, establishes Support Group Guidelines. These operating guidelines ensure the consistency of support groups related to educational opportunities, principles of emotional support, confidentiality, and unbiased relationships with industry.

Support Leader Guidelines Industry Guidelines Speaker Guidelines Funding Requests Guidelines Confidentiality Statement

Alpha-1 Foundation Website The Alpha-1 Foundation Website is a resource for people affected by Alpha-1, their friends and families, healthcare professionals, and researchers. On the website they can: Connect with a nearby Support Group See listings of meetings and patient events on the Calendar of Events Find an Alpha-1 Education Day Find the latest advocacy issues and get involved View the latest Alpha-1 community news and information Learn how to join Alpha-1 research programs Find links to assistance programs and other helpful resources Find links to our Industry Partners and other helpful organizations Learn about lung disease, liver disease and panniculitis related to Alpha-1 Use the Alpha-1 Foundation Support Group Leader (SGL) IntraNet. The SGL IntraNet is a password-accessible site with a comprehensive guide to materials and information for Support Group Leaders all in one place. Each leader will be given credentials to access the IntraNet, found on www.alpha1.org.

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Organizing a Support Group and Identifying Members Support Group Structure When setting up your Support Group, it is important to enlist the assistance of other Alphas in your community to help you with accessing area professionals for speaking and outreach of your Support Group, including all AlphaNet Coordinators for your area.

This will help you to sustain your group’s activities. You should consider having a coleader or other defined positions. Asking other Alphas to take on responsibility not only helps to get the work done, it gets others involved, interested and personally invested in the Support Group.

Establishing Your Group Who is an Attendee? Anyone having the Alpha-1 genetic link (null, ZZ, SZ, MZ, FZ, etc.), family members, caregivers, medical professions, friends, or anyone who is interested in learning about Alpha-1. In Support Groups, if you have a deficient gene or null, or no deficiency at all, you are welcome.

First Support Group Meeting – New leaders will receive one-on-one mentoring from the Support Group & Program Coordinator. Preparation will include creating a letter introducing you to the community that encompasses your group. You will also receive a roster of current industry reps and Foundation support personnel to set up your email distribution list to notify them of meetings. Current rosters are available and should be referenced periodically on the SGL IntraNet under Directories. Support group leaders are always responsible for notifying their area industry personnel of meetings.

All first meetings will have a speaker and presentation prepared for you. In some cases, the leader will be the speaker and the presentation will be prepared with speaker notes by the Support Group Coordinator. Once a meeting place and date is set, a meeting invitation will be created, which will give you a template for future meetings. With a lead time of 6-8 weeks, Foundation staff will send your meeting invitation, introductory letter, and support group registration form to those within a specific radius of your meeting location.

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Subsequent Support Group Meetings – The leader(s) will select topics and speakers.

You can get help until you are comfortable with the process. Each invitation must be sent to the Support Group Coordinator for approval before emailing it out to your attendees and industry. The approved invitation will be returned to you for emailing; the Foundation will also email and mail out the invitation. Allow 6 weeks before your meeting to make this request. This gives the Foundation staff time to process and gives recipients time to respond. Always include a Support Group Registration form, so that new people can be added to the mailing list, even if they can't attend.

Email Meeting Invitations – Support group meeting invitations should be attached to the email in a PDF or JPEG format with a message from the leader(s). Include Support Group & Program Coordinator on your ‘attendee’ and ‘industry’ email distribution lists. Put your email in the ‘TO’ window, industry and medical personnel in the ‘CC’ and all other attendees in the ‘BCC’ window. Be careful to always send emails to people in your group by using the ‘BCC’ window to protect personal identifying information.

Event Calendar – Your meeting information will be posted on the Foundation website Events Calendar. Follow-up to be sure your meeting is listed on the calendar and the information is accurate.

Post Meeting Information – You may want to use other ways to notify your community about your meetings. Some possible opportunities: o

Newspaper – Free ad in the newspaper (both online and offline) – local

o

newspapers usually have a section for upcoming community meetings Physicians – Ask if you can post in their offices

o

Rehab Facilities – Ask to post in their facility

o

Local support groups and community group such as Better Breathers and

o

organ transplant support groups, ALA and COPD groups Clinical Resource Centers and hospitals

o

Organ transplant facilities

o

Other websites and social media   

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Alpha-1 online groups Appropriate Facebook pages See Resources in this manual

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Support Group Leader Protocol Personal Code of Conduct As a Support Group Leader, you are a volunteer representative of the Alpha-1 Foundation. Leaders are held to a high level of professionalism. Your words, your actions and participation in activities in the community can have a profound effect on someone’s life. You may be the first person a newly diagnosed Alpha or family member has contact with. The information you relay and your demeanor probably will have a lasting influence on how a person adjusts to their diagnosis and lifestyle changes.

Communications The Support Group contact information that is listed on meeting invitations and on the Alpha-1 Foundation's website for Support Groups is a vital means of communication with your community, whether it is by telephone or email. It is important to: Be alert to time of day calling and time zones if you are calling long distance Keep conversations confidential – be cautious about being overheard Be courteous Set a pleasant voice message and identify yourself Review all emails for appropriateness and content before you send them

Expectations Every Support Group must have a minimum of four Support Group Meetings per year.

Each Support Group Leader is required to complete the training assigned in order to increase skill levels and stay current with new information and best practices. There are nine SGL Telecalls each year with important updates for managing support groups.

These Telecalls will include reference information from the Virtual Support Group Telecall series. The Foundation will provide continuing education on topics as they arise.

SGL Telecalls are archived for easy access electronically, as are the Virtual Support Group Telecalls. When you miss Telecalls, contact the Support Group Coordinator to be sure you receive your training.

Failure to abide by expectations may lead to being asked to step down from leadership.

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Meeting Planning Meeting day and time for your meeting – The leader(s) decide meeting times.

Consider if your membership is mostly working or retired. Weekday lunchtime, evening meal time or a Saturday are often good for both members still working and retired people. Also consider what will work for you if you are still in the workplace.

Meeting location – We encourage you to hold meetings in places that do not require a meeting room or parking fees. When asking about a venue, remember to mention you are holding support meetings for a non-profit organization, to help avoid a room fee. Good locations are often available at hospital or clinic conference rooms, churches, schools or public libraries. Other options may be community centers, clubhouses or community recreation centers.

Restaurants that have separate meeting rooms or allow for more secluded gatherings can also be a good choice.

A meeting place should have easy access to parking, be handicap-accessible, and have no smoking or other environmental risks. Avoid steps where possible, if an elevator is not available. If you are in a larger city, consider having the meeting in a central location for easier access for all prospective members. Also consider moving your locations around to accommodate attendees and reach out to more people.

Meals or Refreshments - Meal funding is available through the Foundation’s Support Group Meeting Fund, comprised of donations from AlphaNet, Baxalta, CSL Behring and Grifols. A Funding Request form should be completed for each meeting. Complete it with your estimation of attendance and send to the Support Group Coordinator, who will approve it and make payment arrangements with the caterer or restaurant.

If a Specialty Pharmacy or other entity has agreed to provide the meal, advance approval should be obtained from the Support Group Coordinator.

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Prepare Meeting Notice – Six weeks prior to your meeting, prepare meeting notice/invitation and send to the Support Group Coordinator. The notice will be sent back to you as a Word document and a PDF (Adobe file) to distribute to the members of your support group and all support and industry personnel. It will also be posted on the website’s Events Calendar. In addition, pass the notices on to all resources mentioned in ‘Organizing a Support Group and Identifying Members’. Meeting notice templates are located on the SGL Intranet under Forms and Guidelines. Be sure to add ‘Please refrain from wearing colognes or fragrances’ statement on all notices.

Meeting Materials – Gather materials for your meeting. The following materials should always be available at every meeting and are available on the SGL Intranet for printing yourself. Printed copies can be ordered on the Alpha-1 Foundation’s website.

▪

Alpha-1 Foundation Support Group Registration Form

▪

Confidentiality Statement

▪

Industry Representative Guidelines

▪

Foundation Brochures and Alpha-1-To-One magazine

▪

Foundation Updates

Check the Foundation website regularly for any news flashes, updates and interesting stories at www.alpha1.org.

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Prepare a Meeting Agenda – Plan on arriving early and have confidentiality statement and Support Group Registration forms available. Place brochures and pamphlets on a separate table or in an easily accessible area. Remember to have pencils/pens, note pads and nametags available. Follow the planned agenda and be a timekeeper. The agenda might include: 

Call to order, introduce yourself and welcome all attendees



Follow the standardized opening steps found under “Conducting a Meeting”



Introductions of attendees



Invite attendees who are not on the Alpha-1 Foundation’s mailing list to fill out the Support Group Registration Form

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Present Foundation updates, advocacy updates, AlphaNet Coordinator news, leader news and industry news

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Introduce the guest speaker



Discuss a topic of interest



Refreshments or meal



Open discussion



Next meeting announcement

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Adjourn

Designate a Greeter – We recommend that you ask one or two people, depending on the size of the meeting, to greet attendees as they arrive. The greeter should introduce new attendees to regular attendees and invite them to sit where they will feel welcomed and involved.

This will allow you the opportunity to take care of support group business such as passing out Support Group Registration forms to new attendees, and industry guidelines to new representatives attending the meeting.

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Suggested Meeting Topics

Meeting Topics

Type/Likely Source of Speaker

Pulmonary rehabilitation

Pulmonary Therapists

Oxygen products and services

Respiratory Therapists

Medicare Enrollment

State Health Insurance Assistance Program (SHIP)

Marketplace Exchanges/Insurance

Healthcare Policy Experts

Physical Therapist

Local hospital or PT Facility

Alpha-1 Lung Disease

Local pulmonologist/CRC Physician

Alpha-1 Liver Disease

Local hepatologist/CRC Physician

COPD Effect on the Heart

Cardiologist

Diet and Nutrition

Nutritionist/Dietician

Alpha 1 Foundation Programs & Services

Alpha-1 Foundation Staff

Lung and/or Liver Transplants

Transplant Coordinator or Recipient

Estate Planning

Attorney or Estate Planner

Fitness and Yoga

Personal Trainer, Yoga Instructor

Caregiving Challenges & Opportunities

Home Care Organization

End of Life Issues and Concerns

Hospice or Estate Planners

Coping with Chronic Illness

Psychiatrist, Psychotherapist, Counselor

Family Health History

Genetic Counselor

Vest - Airway Clearance Product

Local supplier of various vest products

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Skype Presentations Several Clinical Resource Center physicians and the Foundation’s genetic counselor are available to speak and present an interactive Q&A session with your support group.

Contact the Support Group Coordinator to set up a meeting and discuss other Skype opportunities, including Building Friends for a Cure.

E-Education Presentations National Conference and Education Day presentations are available to bring expert video and slide presentations to your support group. Contact the Support Group Coordinator for assistance.

Suggested Activities Activity

Contact

Awareness Activities

Karen Erickson

Fundraising Activities

Angela McBride

Plasma Center Tour

Barbee Bennington for all tours

Rare Disease Day Harmonica Therapy Sharing Each Other’s Stories Picnics Benefit Concert Christmas Party Proclamation Signing with Governor

Barbee Bennington

Participate or exhibit at local health fairs and events held by the American Lung Association, COPD Foundation, American Liver Association or American Liver Foundation

Karen Erickson

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Communication Having access to a personal computer is essential in running a Support Group. It allows easy access to communication with the Alpha-1 Foundation, member of your group, industry representatives, and government representatives and/or organizations. It can also be used to keep documents and records, prepare meeting notices and other correspondence. It will also allow you to have a record of email communications sent and received. * If you do not have a computer, please contact the Support Group Coordinator for further options.

Creating and using an email account for your group: Set up an email distribution list for your group attendees and a separate distribution list for members of industry. This will make it easier when you are sending or forwarding emails.

Send all group emails using BCC (for “blind carbon copy”). This will ensure that you maintain confidentiality of patient information. To use this procedure, locate the BCC option under ‘Send’ in your email program. Windows should be used in this manner:  ‘TO’: your own email  ‘CC’: industry and medical personnel  ‘BCC’: all other attendees (If you need help with this, contact the Support Group Coordinator) Learn how to send emails to your group and practice if needed Forward emails from the Alpha-1 Foundation Forward emails from outside sources (American Lung Association (ALA) events, Rare Disease Day, etc). If you question the appropriateness of forwarding any information, contact the Support Group Coordinator.

Use of Foundation logos or letterhead is not permitted without permission from the Support Group Coordinator.

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Conducting a Meeting

Following the Support Group Leader Guidelines, please standardize the opening of each meeting: Welcome all attendees to the Alpha-1 Foundation Support Group Meeting.

Acknowledge the sponsors as AlphaNet, Baxalta, CSL Behring and Grifols. If another company or entity furnishes the meal, acknowledge and thank them. Give a quick overview of the meeting about to take place.

Introduce all industry representatives present and tell attendees that they are available to answer questions during the breaks and lunch.

Distribute the Support Group Registration Form for new attendees and discuss its importance to you, the Support Group leader, for establishing a mailing list for the group. Assure attendees that all contact information is confidential. Support group leaders will not share anyone’s personal contact information with the group.

However, anyone may choose to share their information with other individuals.

Read and distribute to new attendees and/or those requesting a copy, the Alpha-1 Foundation Confidentiality and Non-endorsement statement: 





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“If company representatives attending today’s meeting request your personal or physician contact information, please be advised that the Alpha1 Foundation does not control the way that companies maintain or use information. You are encouraged to request from such companies, a written statement as to how they will use your personal information if provided to them.

“Solicitation of patients by any company is not allowed. The Alpha-1 Foundation does not endorse any one product, augmentation therapy provider or specialty pharmacy.

“As a Support Group leader, I have signed a confidentiality agreement with the Alpha-1 Foundation to protect each member’s contact information.”

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Introduction of Guest Speaker – If you have a guest speaker, it is usually best to move right on to making that introduction. It is always a good idea to ask the speaker in advance for a brief biography. It is very important to introduce guest speakers with their proper title and give a brief background.

Introducing attendees – Even if you have a guest speaker and depending on time constraints, it is good to go around the room and let attendees introduce themselves.

Introduce members of industry at the beginning of the meeting, so this time is dedicated to members and spouses.

The First Meeting – The first meeting may be a small gathering of five to 10 people.

Regardless of the number, a great deal can be accomplished. The Support Group & Program Coordinator will assist you in organizing this meeting. A presentation has been prepared to familiarize your group with the Foundation’s role in the Alpha-1 community. This will introduce attendees to the programs and resources offered by the Foundation. A guest speaker for this presentation will be made available and in some cases a new leader may feel comfortable presenting it.

The following are some items that new groups may want to discuss at a first meeting:  Suggestions on meeting times, locations, frequency and length  Does the group prefer formal or informal meetings  Suggestions on topics for upcoming meetings; or make a suggestion box for members to give suggestions  Discuss the role that industry will play with your Support Group 

Ask for volunteers to help – such as a co-leader, secretary, treasurer,

hospitality and publicity person. Be sure to assign tasks to be done  Decide on a definite date, time and place for the next meeting  Have members share their story. Suggest a time limit; remind them not to mention product names and consider carefully what personal information they want to share

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Support Group Structure Every group needs a leader – but the leader cannot do it all. This may seem the simplest way to go, especially at first, but it is a sure road to leader “burnout.” It is easy to forget that Support Group leaders are subject to the same health challenges as the rest of the group. In addition to support from the Support Group & Program Coordinator, the leader can extend his or her own energy and enthusiasm, and extend the life of the group, by filling a few basic “jobs” with the group:

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Co-leader: Another person who shares the job of planning and leading meetings, especially in the leader’s absence. Everyone needs a backup.

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Hospitality: This person arranges refreshments or a meal with a caterer for each meeting, unless the meal is furnished by someone other than the SG Meeting Fund sponsors. This person could also be charged with filling out the SG Funding Request form.



Greeter(s): This position is especially important for new members. When any member misses a meeting or two, it’s nice to have someone there say, “We missed you!”



Fundraising coordinator



Publicity: This person makes sure that meeting announcements get to the local papers and explores other possible sources of publicity, including local groups, hospitals, physician offices, churches, etc.



Awareness: This is an important aspect of a support group, as it is the voice of the local Alpha-1 community. This volunteer would be in charge of capturing opportunities for awareness for your group.

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Newsletter You may decide you would like to write a newsletter for your support group. It can become a method to promote your group and attract new members. It can serve as a permanent record of your meetings and a convenient bulletin for:

Minutes of the previous meeting A letter from the leader: You! Thank yous to speakers, sponsors and volunteers Announcements Updates and Information Contact information of Support Group leader(s), AlphaNet Coordinators, Alpha1 Foundation and other organizations related to the community Special interest educational information, such as upcoming Virtual Support Group Telecalls and Webinars News on seasonal health concerns A calendar for upcoming events Action alerts and advocacy updates News from the AlphaNet Coordinators Keeping all members current with what is going on in the community Communicating awareness and fundraising opportunities You must get advance permission for using a person’s name, story, comments, activities or image. Prior to sending out your newsletter, get approval of content from the Support Group Coordinator to assure accuracy.

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Serving as a Peer Guide Support Group Leaders serve as Peer Guides to their Support Group members. Through this connection, your members in need of support will have the opportunity to discuss difficulties and issues he/she is experiencing. As a Peer Guide you will provide emotional support, discuss resources available to your members and enable them to make choices about their health and lifestyle. A Guide’s primary responsibility is listening. A Guide is a friend, a teacher, a giver of information and a provider of alternatives. Guides will not tell a Peer what to do; rather they will offer information which will empower a Peer to make educated decisions about their health.

It is the responsibility of the Guide to encourage the Peer to take responsibility for improving his/her quality of life. This program encompasses a six-month period for each Peer. This short time period helps to encourage Peers to feel confident in the ability to manage their situation, rather than be dependent on others. The Peer Guide will offer to call Peers on a regular basis for the set a period of time, or they may decide on a less structured contact schedule. At all times, the Guide will respect the Peer’s wishes regarding contact and confidentiality.

As a Peer Guide your goal is to provide information, support and resources to Peers, including: 1.

2.

3.

4.

5.

6.

7.

Communicating information through discussions, printed material and videos.

Helping Peers through the emotions encountered by an Alpha-1 diagnosis Sharing fears, concerns and dreams Giving feedback on progress Providing advice when asked for Introducing newly diagnosed Alphas to the Alpha-1 Foundation.

Providing networking with Support Groups and a list of available resources, including internet access support

If you feel it best to refer your member to a Peer Guide who can relate more directly, please ask your members to contact Cathey Horsak, who manages the Foundation’s Peer Guide Program at 1-877-346-3212. She can ensure that a lung-affected Alpha is paired with another lung-affected Alpha. A parent of a newly diagnosed child is paired 2016

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with another parent. Someone facing a transplant is paired with someone who has already had a transplant. Caregivers are paired with other caregivers.

The Role of Industry It is important to understand the role that industry can play in your Support Group and at Support Group meetings. A member of industry is an employee or consultant of a pharmaceutical, biopharmaceutical, home healthcare company or other organization delivering direct and/or indirect patient services on behalf of these companies. Alphas in the employ of industry should disclose their dual status immediately in all interactions.

Industry Guidelines The Foundation recognizes the importance of all members of industry in providing therapeutic products and services that are vital to the Alpha-1 Community. It is for this reason that it has established Guidelines to ensure the unbiased treatment of all industry representatives at Support Group meetings and to address the interpersonal interactions with patients by industry employees at meetings. These guidelines have been recommended by a committee of veteran Support Group leaders and Foundation staff and approved by our Board of Directors. They have also been vetted through the Alpha-1 Industry Advisory Committee, comprised of the marketing leadership of all augmentation therapy, home healthcare and health management companies. These guidelines may be found on the SGL Intranet and are emailed annually to all industry personnel associated with your group. They should be reproduced and provided to all industry members in attendance at your meetings who did not receive it via email.

Industry Speakers at Support Group Meetings Industry may from time to time provide expert speakers. These speakers may be local physicians, health care professionals or experts on a particular topic. Local representatives can also provide speakers from their company; however, sales representatives may not present at a meeting. All speakers should remain unbiased and neutral regarding augmentation therapy products. Many times you may have an opportunity to have an Alpha who works for industry share their Alpha story. All speakers should refrain from promotion of a specific augmentation therapy product as outlined in the Industry Guidelines.

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Funding Requests for SG Meetings All three augmentation companies, Baxalta, CSL Behring and Grifols, provide funds directly to the Foundation for support group meetings. Meeting funds provided by these companies must be requested using the Support Group Meeting Funding Request form.

This means the sales representative cannot pay locally with his/her credit card. You will need to place your order with a local restaurant or caterer.

Specialty pharmacies such as Accredo, BioRx and Coram, also should be given a fair and equal opportunity to fund Support Group meetings throughout the year. Please contact your local rep about funding a meeting.

All meeting requests must be made by using the Funding Request procedure at least four weeks before your proposed meeting.

Contact the Support Group & Program Coordinator directly if period. In this case, the Foundation will work directly with the to arrange payment. You will need to obtain the receipt and Group & Program Coordinator after your meeting is held via Please make a copy if you are mailing it through USPS.

you missed that 4-week restaurant or the caterer return it to the Support email, text or U.S. Mail.

If the restaurant or caterer will not take payment arrangements over the phone with a credit card, contact the Support Group & Program Coordinator for other options.

Any funding other than meals will need to have pre-approval. Contact the Support Group & Program Coordinator directly eight (8) weeks in advance with your funding needs. You must provide what you want funded and the reason for the request.

Download and complete the Support Group Meeting Funding Request form. Meal costs for attendees should be kept at $15 per person or less. If there is a special circumstance, please contact the Support Group & Program Coordinator.

Speakers should be professionals within your region or one from our industry partners.

If you need ideas on speakers or are having difficulty finding a speaker, contact Support Group & Program Coordinator. Please be aware support group meeting funding is not meant to be used for room fees, to fund travel expenses for speakers, you or your group members.

Support Group Meeting Funding Request Form

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Budgeting and Reporting This manual includes several items to assist you in budgeting and maintaining an accounting of expenses: The Alpha-1 Foundation provides $125 annually for Operation Funds to Support Groups. Support Group Leaders can request this funding by filling out the Support Group Operation Funds application and submitting it to the Support Group Coordinator.

Acceptable Operating Costs:               

Name tags – Stickers Pens/pencils/markers Paper/ Poster board Ink/Toner Envelopes Notebook & notepads Tape Business card holder Brochure display holder Fax, copy and printing fees Postage– not intended for mailing invitations Sympathy, thank you & get well cards Carrier, such as plastic tubs, for supplies Extension cords Computer cables and connectors for presentations Water for meetings

Expenses Requiring Approval from the Support Group Coordinator:   

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Meeting equipment rental Unexpected Fees Shipping costs

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Non-allowed expenses: • • • • • • • • • • • • • • • •

Location/Meeting rental fees Equipment rentals Speaker fees Phone bills Internet charges/Websites Travel or Lodging expenses Computer or Computer programs Meals (Support Group Meal Funding expense) Party Favors & Games Gifts, Prizes and/or Give Aways T-Shirts Flowers Building Friend for a Cure expenditures Awareness and Advocacy expenditures Non Foundation Event expenditures Booth/Table Fees

To access these funds annually you need to request your Support Group Operation Funds using the SG Operation Fund Request Form.

Support Group Leaders must maintain an expense log to track the expenses incurred in operating their groups. Keep all receipts to be turned in with the expense log.

Receipts need to be scanned and emailed to the Support Group Coordinator annually.

Support Group Leaders should contact the Support Group & Program Coordinator or Director of Community Outreach if they have suggestions or problems with the financial aspects of operating their group.

Upon leaving your position as a Support Group Leader, you are required to return any unused funds from the Support Group Operation Funds for your Support Group.

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Support Group Forms The following forms were developed to assist leaders in the running of an Alpha-1 Support Group.

The following forms are to be used by the Support Group Leader as indicated: Patient Confidentiality Statement to make certain that all members understand the confidential nature of the group.

Support Group Registration Form should be completed by all members. This includes members attending and also those who are unable to attend a meeting but wish to remain in contact with the group. It gives permission to add them to the Support Group mailing list and to the Alpha-1 Foundation mailing list. You should fax or email a copy of this completed form to the Foundation to the person on the bottom of the form. This information can only be shared with the Foundation.

Guidelines for Industry at Support Group Meetings This form should be given to all members of industry who attend Support Group Meetings.

Support Group Invitation Template is a standardized form to guide the SGL in developing meeting invitations.

Speaker Guidelines outline Foundation standards for all speakers and moderators at Alpha-1 Support Group meetings and/or other educational programs and events.

You will find these forms, to download and run printed copies, on the SGLS IntraNet located under Forms and Guidelines. You may obtain printed copies by contacting Joy Collins at 1-877-228-7321 ext. 251 or email jcollins@alpha1.org.

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Community Outreach Awareness Each Alpha has the opportunity to make a difference in their own way and contribute to the betterment of the Alpha-1 Community. Creating Awareness occurs in many different forms. No one can tell your story better than you!

We have outlined below numerous activities that you can consider for you and/or you group to get involved with. You will find the resources to support these efforts on the Support Group Leader Intranet under Awareness & Advocacy.

Promote November as Alpha-1 Awareness Month – Obtain a proclamation from your state.

Promote Rare Disease Day in February Generate publicity about Alpha-1: o

Have an article placed in your local newspaper(s) re: Proclamation and/or a personal story

o

Have an article on a news, health or other website about Alpha-1 or a personal story

o

Interview with local TV/Radio Stations

o

Submit a letter to the Editor about an advocacy issue or on Alpha-1 awareness

o

Place a Public Service Announcement with your local Radio/TV station

Contact other related support groups in your area and ask for the opportunity to educate about Alpha-1 (Better Breathers, Organ Transplant Groups, Pulmonary Rehab Groups, Liver or Lung Transplant Groups, COPD events, American Lung Association events, other Respiratory Organization, AARP Chapter, etc.)

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Promote awareness at Health Fairs Ask your local civic and community groups to let you speak at one of their meetings. (Lions, Kiwanis, Jaycees, Rotary Club, churches, etc.)

Speak at local medical school to students on Alpha-1. (Respiratory Therapists, Nursing, Pharmacy, teaching hospitals, etc) Use the Internet! Post on Facebook, LinkedIn, Twitter, Vimeo or other social networking sites, or share your story on YouTube!

Personal Awareness Campaigns – Contact the people you know best. o

Write a letter about Alpha-1 to your family and friends and ask them to share the information with their friends and associates. You could combine this with a request for a donation for the Alpha-1 Foundation.

o

Ask your local minister to let you share your personal story about Alpha-1 in an effort to encourage others in the community to be tested. This is a genetic disease. Many people in a community come from the same background.

o

Ask your employer or former employer or your spouse’s employer to publish your story in their company newsletter and obtain the Alpha-1 Signs and Symptoms fact sheet to run with the article.

o

Contact your Healthcare Provider and provide them with literature about Alpha-1 (who should be tested and ways to be tested.)

o

If you belong to an organization, any organization, ask if you can share information about Alpha-1 with other members.

Advocacy on Alpha-1 An Alpha-1 advocate is someone who works to raise awareness for Alpha-1 and help change public policy to improve the lives of all Alphas.

In addition to Support Groups’ vital purpose in facilitating improved health, they can also be a powerful force when members are united in advancing public policy issues that

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affect those living with Alpha-1. This section’s goal is to brief you about the Alpha-1 Advocacy Program and how you can engage your Support Group members in advocacy.

There are many issues of concern to the Alpha-1 Community that can make an impact on the quality of life for Alphas and for future generations. Although specific issues may change, the Foundation’s public policy program focuses on: Access to quality health care, including keeping and expanding current insurance reimbursement Blood product safety and availability Funding for medical and scientific research Urgent Need for New Therapies The Alpha-1 Foundation monitors and influences federal legislation and regulations that affect people and families living with Alpha-1. We accomplish this by collaborating closely with the Alpha-1 Foundation and other national organizations and coalitions with similar public policy goals. We ensure that the interest of the Alpha-1 Community is heard in the legislative process by harnessing our collective power in an organized grassroots lobbying effort.

A Public Policy Working Group (PPWG) is organized for the purpose of developing and recommending public policy goals to the Board of Directors of the Alpha-1 Foundation.

Representatives are designated to the PPWG as well as to its national membership organizations and coalitions. Johanna Gray represents the Alpha-1 Foundation on Capitol Hill, ensuring a coordinated effort on behalf of the Alpha-1 Community.

You can help influence the outcome of legislation and make a difference for yourself, your loved ones and for the Alpha-1 Community. Grassroots advocacy personalizes the issues that matter most to you, empowering you to inform legislators who may not be familiar with Alpha-1 Antitrypsin Deficiency and help to move forward our public policy agenda. We encourage you to become an active Alpha-1 Advocate on behalf of the Alpha-1 Foundation and encourage your members to join as well.

We encourage you to: 1. Learn about the issues of concern for the Alpha-1 Community by thoroughly reviewing the Advocacy section our website: www.alpha1.org.

2. Review the current Legislative Agenda and Action Alerts!

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3. Learn about the Congressional system and how you as an advocate can interact within that system to make a difference.

4. Join the Alpha-1 Grassroots Advocacy Network online and become an Alpha-1 Advocate. As an Advocate, you will: Receive special advocacy briefings by email and telecall Be asked to take action on issues and inform us of your activities so we can track the effectiveness of our grassroots network Have the opportunity to participate in other advocacy activities as they develop in your state or at the national level Have the opportunity to receive advocacy training materials and attend advocacy trainings 5. Order Advocacy material for your planned event. Information on advocacy to help Alphas become effective advocates is available on the SGL Intranet under Advocacy and Awareness and on the website under How to Help. You can find useful tools that will guide you in understanding what advocacy is and how to get involved. Our Advocacy information includes: Tips on contacting your Legislator Meeting with your Legislator Testifying before a committee Writing to your Legislator Emailing your Legislator Calling your Legislator What you need to know about Alpha-1 You can greatly increase public awareness and understanding of your issue by developing and implementing a media strategy. Volunteers can write letters to the editor of local newspapers in individual legislative districts. Your organization can work with the media to develop human-interest stories. The more people who are aware of your issue, the easier it is to build support.

For more information on how you can get involved in advocacy, contact the Alpha-1 Foundation at 1-877-228-7321 or visit the website at www.alpha1.org.

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Fundraising: Building Friends for a Cure

Ever wonder how you can make a difference? Want to help the Alpha-1 Foundation, but don’t know where to start? Everyone is good at something. So why not use that talent to create a fundraiser? You can put together a walk, themed dinner, bowling night or game night. No matter what your event idea may be, the Foundation is here to help you plan from start to finish.

Don’t know what type of event you want to throw? You might get inspired by others who have volunteered their time to put on fundraisers to help raise awareness and funds for Alpha-1 research.

The Alpha-1 Foundation encourages its Support Groups to engage in fundraising activities on a local level; however, it is not a required activity. All fundraising efforts are required by law to be conducted under the auspices of a 501(c) 3 not-for-profit organization to conduct charitable solicitation activities. We have developed these Guidelines to assist you in your fundraising efforts.

Groups may raise funds to support research under the Alpha-1 Foundation’s 501(c) 3 for its Building Friends for a Cure program. Please contact the Foundation directly if you choose to raise funds for research and related programs. Please contact Angela McBride at 1-877-228-7321 ext. 233 or amcbride@alpha1.org to discuss fundraising on behalf of the Foundation.

Alpha-1 Foundation Programs 2016

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

The Patient Support Network is comprised of approximately 80 affiliated

Support Groups in most states throughout the country, 4 Virtual Support Groups and support resources provided through our national Patient Information Line and Peer Guide referrals. These support services are diverse and provide the greatest reach in order to best assist the Alpha-1 Community. 

The Alpha-1 National Education Series is comprised of six one-day patient

educational programs which provide access to current medical information and resources for Alphas, their families and caregivers. A patient dinner or event is held in conjunction with each day to provide Alphas and their families an additional opportunity to interact and connect with each other.  The Alpha-1 National Education Conference is the largest gathering of Alphas and their families in the country. This Conference provides an arena for Alphas to network with each other, become motivated to take charge of their health, sign up for a local Support Group, take part in awareness and outreach activities, participate in a fundraiser or get involved in advocacy. 

Educational Materials on Alpha-1 provide validated medical information for

physicians, medical professionals, individuals being tested for Alpha-1 and for all individuals and their families living with Alpha-1. The materials are widely disseminated by the Foundation upon request, at patient and professional meetings, at all awareness and detection activities and via the AlphaNet On-Demand system. 

E-Education Library is for Alphas to learn as much as they can about

their diagnosis, as the first step towards empowerment. The E-Education library is comprised of a variety of educational presentations given by Alpha-1 specialists on a range of different topics.  based

The Alpha-1 Genetic Counseling Program provides free telephonegenetic

counseling

for

patients,

family

members,

and

healthcare

professionals. 

Alpha-1 Kids - When a child is diagnosed with a rare condition, it can be

devastating to a family. The Alpha-1 Foundation aims to assist these families with 2016

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targeted information to ease their anxiety and help them cope. The Alpha-1 Kids program provides information to parents of Alpha-1 infants, children, adolescents and young adults about their diagnosis and provides support, information and data about its impact during childhood.  Alpha-1 Global - The mission of Alpha-1 Global is to build and maintain a collaborative global network of Alpha-1 organizations and patients to increase awareness, detection, and access to care around the world. 

Patient Assistance Programs

–

The Alpha-1 Foundation website

provides a comprehensive listing of many organizations that offer private and public patient assistance programs for individuals who are in need. 

Public Policy, Advocacy and Access & Reimbursement – The Alpha-1

Foundation is promoting critical Alpha-1 research, advocating for our community and promoting access to care and support at the state and federal level. We work diligently to make Alpha-1 a national priority by speaking out about the needs and rights of people with Alpha-1 and their families. The Foundation is addressing the challenges that face our community ranging from diagnosis, treatment, research, cost of care, access to specialists, ensuring reimbursement and more. The Foundation's Public Policy Program advocates on behalf of the Alpha-1 community by monitoring and influencing legislative and regulatory issues. Of primary concern is the stimulation of medical research, the development of new therapies, screening and detection, access to care and treatment, federal and state funding, blood product safety, education, awareness and the recognition of the special needs of individuals with Alpha.

The Alpha-1 Research Network has over 80 associated Clinical Resource Centers (pulmonary and liver centers) in most states and one in Canada, overseen by the Foundation’s Medical and Scientific Advisory Committee. Centers also offer other resources for Alphas such as support groups, transplant centers and pulmonary rehabilitation. These specialists in clinical practice and/or Alpha-1 research are available for consultation. Alphas and their physicians are encouraged to call their nearest Clinical Resource Center for information and or contact the Foundation’s

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Clinical Director, Robert Sandhaus, MD, PhD, toll free at (877) 228-7321, Ext. 226.

Also included in the research network: • The Alpha-1 Research Registry is a confidential database of Alphas and Alpha-1 carriers who have voluntarily enrolled. This is the largest Alpha-1 Registry in the world, providing the critical population base essential for clinical trials for new treatments and research studies to find a cure. For more information, call toll-free, 1-877-886-2383.

• The Alpha-1 Research Program was established at the University Of Florida College Of Medicine in 1998 as a resource to the international investigator community. This first academic research program exclusively devoted to the study of Alpha-1 includes an endowed Alpha-1 Chair, a Clinical Research Unit, a Translational Research Lab, and a separate Alpha-1 Genetics Laboratory.

• The Alpha-1 DNA & Tissue Bank was established in 2001 at the University of Florida to provide a researcher-accessible repository of Alpha-1 specific tissue to be used for research.

• Scientific Meetings, Conferences, Workshops, Working Groups and Symposia bring scientists together to focus on special topics related to Alpha-1, to advance knowledge of the disorder and to work toward new therapies and a cure.

• Alpha-1 Coded Testing provides free, confidential testing for Alpha-1 through a research study that evaluates perceived risks and benefits of genetic testing.

For more information, call toll-free, 1-877-886-2383.

• Publications: Foundation publications include Alpha-1-To-One Magazine, the Research Registry Update newsletter for those enrolled in the Registry, and educational materials for Alphas, their families and healthcare providers which are also available on the Foundation website, www.alpha1.org. If you would like to receive any of these publications, call toll-free, 1-877-228-7321 ext. 251.

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Alpha-1 Foundation History

In 1986, a group of patients diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) were enrolled in a national longitudinal study at the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH). During this study, many people with Alpha-1 (Alphas) got to know each other better and became friends and associates.

As clinical centers across the country enrolled in the NHLBI study, Alpha-1 became better known and additional patients were identified.

This initial networking set the stage for the development of a national organization for Alphas. At that time, the disorder was considered quite rare, motivating Alphas to keep in touch after meeting in person or by telephone. Mailings to the growing list of Alphas helped to keep them informed about the latest in Alpha-1 research and treatment.

On March 24, 1989, an Alpha named Peter Smith published the first issue of an informal newsletter called the Alpha-1 News, with accurate, informative articles written for Alphas and their families.

Around the same time, several support groups were meeting regularly in San Diego, San Francisco, Minneapolis, Denver and Boston, among other cities. After an Alpha-1 News article about the value of support groups and the activities of the Minnesota group, Alphas in other areas of the country contacted the Minnesota group asking for help in starting their own support groups.

The Minnesota Support Group, organized in August 1988, met at the American Lung Association in Minneapolis. The group coordinated a regional conference for health care professionals March 7-8, 1991, hoping to increase local interest and improve the diagnosis of those with Alpha-1.

Discussions and planning began for the formation of a national organization to bind the regional support groups together for a common purpose.

Articles of Incorporation for the Alpha-1 Antitrypsin Deficiency National Association were filed in Minnesota on May 29, 1991. The board was comprised of 13 members and an administrator. The board included Alphas, an Alpha-1 spouse, and several healthcare professionals. The board appointed Sandy Brandley as the organization’s executive director. The Certificate of Incorporation was issued June 7, 1991 and the Alpha-1 board held their first official meeting July 10, 1991.

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The Alpha-1 National Association and the American Lung Association of Hennepin County (Minnesota) entered into a working agreement on Jan. 29, 1992. The agreement allowed Lung Association staff to provide administrative support for the newly formed organization, a relationship that lasted for four years. The Alpha-1-Antitrypsin Deficiency National Association received exemption under IRS code 501(c)(3) in April 1992.

In 1994, the NHLBI was winding down its huge 7-year study of Alpha-1. This meant funding from the NIH for research would end. At the time, John Walsh was on the Alpha-1 Association Board along with Robert “Sandy” Sandhaus, MD, PhD. At a strategic planning meeting of the Board that year, Walsh made two proposals: that the Association create an Alpha-1 research foundation and also start a business that would ship Prolastin, then the only Alpha-1 augmentation therapy, and would hire Alphas to provide customer service and a disease management service.

The Association was then still in its infancy and struggling financially. The executive director was still not a full-time employee and the American Lung Association staff was still providing essential support. A majority of board members believed that demands on staff would be too great to establish another organization. The board voted against both proposals. When Walsh asked the board if it objected to his pursuing the idea on his own, the board had no objection.

At the time, Walsh was an active member of the Association’s Florida chapter called the FLAlphas. After a meeting of the chapter board late in 1994, the members held a focus group, the results of which prompted Walsh and a few others to move forward with the idea of establishing an Alpha-1 research foundation.

The Foundation was created in February 1995 with three incorporators, all Alphas: John Walsh, Sandy Lindsey and Susan Stanley. AlphaNet was created later the same year to contract with a local pharmacy to dispense and ship Prolastin.

AlphaNet obtained a

wholesale pharmacy license that gave them the ability to buy the drug.

Both the

Foundation and AlphaNet received 501 (c)(3) not-for-profit designations, and Bayer Corp., the manufacturer of Prolastin, donated seed funding for the new foundation.

Terry Young became the first AlphaNet coordinator in the summer of 1995, and later its first general manager as AlphaNet grew.

The Foundation Board expanded to 10

members in October 1995, keeping a majority of Alphas as the bylaws required.

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A series of major donors helped the Foundation to build the infrastructure essential for ongoing research.

Ron Fraser, the University of Miami baseball coach, and his wife Karen chaired and organized the Foundation’s first special events in 1997.

The following year, with

influential support by Barbara and Michael Weintraub, the Health Foundation of South Florida provided a grant to establish the Alpha-1 Research Registry. The Frasers and Weintraubs were highly instrumental in recruiting Mark Brantly, MD, from the NHLBI to an endowed professorship at the University of Florida, establishing a major Alpha-1 research center and the world’s largest Alpha-1 DNA and Tissue Bank. The State of Florida Alpha-1 Detection Program was also created largely through the efforts of these major donors.

In 1999, Marilina and Leo Fernandez established the Fernandez Liver

Research Initiative, providing a grant of $1 million for five consecutive years, and with a group of their friends created the annual Celebration of Life event in Miami.

Most

recently, the generosity of the Gordon Cadwgan family helped to create and fund The Alpha-1 Project, aimed at speeding the development and commercialization of new therapies for Alpha-1 lung and liver disease.

Walsh often referred to the three organizations – the Alpha-1 Association, Alpha-1 Foundation and AlphaNet – as “the three-legged stool.” All three organizations served the Alpha-1 community and each grew and focused on their separate mission statements.

The program portfolio of the Alpha-1 Association became impressive under Sandy Brandley’s leadership, expanding into public policy initiatives and oversight of the evergrowing support group network.

Brandley stepped down as executive director in 2002 and the organization was moved to Washington, DC. The Association experienced serious financial problems that year and in 2003, AlphaNet agreed to provide management services to the organization. The assistance made it possible for the Association to continue fulfilling its mission of support, education and advocacy. This was also the beginning of a stronger relationship with the Alpha-1 Foundation. Miriam O’Day, the Foundation’s senior director of public policy, managed the Association’s day-to-day operations until 2006, when Marlene Erven was named executive director and the offices were relocated to Miami, FL. Erven 2016

Page 38

had served with the Foundation for nine years.

With the Association offices located in

the same building as the Foundation and AlphaNet, collaboration and cooperation between the three organizations was closer than ever.

The Alpha-1 Association merged into the Alpha-1 Foundation in 2014, eliminating duplication in programs and capitalizing on staff talents. A new mission statement was created: The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide.

To date, the Foundation has invested nearly $60 million to support Alpha-1 Antitrypsin Deficiency research and programs at 103 institutions in North America, Europe, the Middle East and Australia.

As Sandhaus pointed out, “More than 20 years ago, John Walsh suggested that the Association should run a research foundation. And now, with the merger of the two organizations in 2014, the Foundation has absorbed all the programs of the Association, and Jon has been successful in achieving what he first sought, a single organization representing the Alpha-1 community.�

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ACKNOWLEDGEMENTS The Board of Directors of the Alpha-1 Foundation gratefully acknowledges and recognizes the following individuals for their invaluable cooperation and assistance in the research and development of this Training Manual and Resource Guide:

2016 Edition: Tom Corron

Alpha-1 Associate

Support Group Leader

Cathey Horsak

Board of Director Member

Director of Community Programs

Dennis Pollock

Alpha-1 Foundation

Board of Director Member

Alpha-1 Foundation

Jenn Jopp Support Group Leader Board of Director Member Alpha-1 Foundation

DC Young

Alpha-1 Association

Karen Erickson Associate Executive Director of Community Engagement Alpha-1 Foundation

Former Board of Director Member

Original Manual:

Support Group Leader

Gayle Allison

Alpha-1 Foundation

Support Group Leader

Barbee Bennington Support Group and Program Coordinator Alpha-1 Foundation

Support Group Leader Patient Service Coordinator

Barbara Pusey

Angela Merkens

Alpha-1 Foundation Staff:

Fred Walsh

AlphaNet

Support Group Leader

Alpha-1 Foundation

Support Group Leader

Patient Service Coordinator AlphaNet

Ed Brailey Support Group Leader Board of Director Member

Patient Service Coordinator AlphaNet

Marianne Mullen Support Group Leader Patient Service Coordinator AlphaNet

Joe Reidy Support Group Leader Board of Director Member Alpha-1 Foundation

Resources 2016

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Alpha-1 Lung Disease www.alpha1.org/Newly-Diagnosed/Learning-about-Alpha-1/Lung-Disease Alpha-1 Liver Disease www.alpha1.org/Newly-Diagnosed/Learning-about-Alpha-1/Liver-Disease Alpha-1 Kids www.alpha1.org/Newly-Diagnosed/Living-with-Alpha-1/Alpha-1-Kids Alpha-1 Panniculitis www.alpha1.org/Newly-Diagnosed/Learning-about-Alpha-1/Panniculitis Testing for Alpha-1 www.alpha1.org/Newly-Diagnosed/Learning-about-Alpha-1/Testing-for-Alpha-1 Patient Info Hotline www.alpha1.org/Newly-Diagnosed/Living-with-Alpha-1/Patient-Info-Line Treatment/Augmentation Therapies www.alpha1.org/Newly-Diagnosed/Living-with-Alpha-1/Treatment Finding an Alpha-1 Specialist www.alpha1.org/Newly-Diagnosed/Living-with-Alpha-1/Find-an-Alpha-1-Specialist Clinical Resource Centers (CRCs) www.alpha1.org/Newly-Diagnosed/Living-with-Alpha-1/Find-an-Alpha-1-Specialist

E-Education 2016

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www.alpha1.org/Alphas-Friends-Family/Education/E-Education Research Registry www.alpha1.org/Newly-Diagnosed/More-Alpha-1-Resources/Research-Registry Patient Assistance Programs www.alpha1.org/Alphas-Friends-Family/Resources/Patient-Assistance-Programs AlphaNet www.alphanet.org The Big Fat Reference Guide (BFRG) www.alphanetbfrg.org Building Friends for a Cure www.alpha1.org/How-to-Help/Help-Raise-Funds/Building-Friends-for-a-Cure Ordering Alpha-1 Foundation Brochures www.alpha1.org/Alphas-Friends-Family/Publications/Brochures

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E-Education Online Videos The Alpha-1 Story www.vimeo.com/134568032 A heartfelt short documentary profiling three families affected by the genetic condition -Alpha-1 Antitrypsin Deficiency. Produced and directed by Maria Virginia Deliz, Alpha-1 Foundation

Alpha-1 Basics www.vimeo.com/126845715 Speaker: Robert Sandhaus, MD, PhD, FCCP 2014 Las Vegas Alpha-1 Education Day December 13, 2014

Alpha-1 Lung Disease www.vimeo.com/137953607 Speaker: Kamyar Afshar, DO, Director, USC Center for Advanced Lung Disease 24th Annual Alpha-1 National Education Conference July 24 - 26, 2015 - Garden Grove, CA

Alpha-1 Liver Disease www.vimeo.com/137953605 Speaker: Jeffrey Teckman, MD, Professor of Pediatrics and Biochemistry & Molecular Biology, Director of Pediatric Gastroenterology and Hepatology, St. Louis University School of Medicine Cardinal Glennon Children's Medical Center 24th Annual Alpha-1 National Education Conference July 24 - 26, 2015 - Garden Grove, CA

Alpha Kids www.vimeo.com/138305211 Speaker: Jeffrey Teckman, MD, Professor of Pediatrics and Biochemistry & Molecular Biology, Director of Pediatric Gastroenterology and Hepatology, St. Louis University School of Medicine Cardinal Glennon Children's Medical Center 24th Annual Alpha-1 National Education Conference July 24 - 26, 2015 – Garden Grove, CA

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Alpha-1 Genetics and Testing Options www.vimeo.com/101410533 Speaker: Sara Wienke, MS, CGC, Genetic Counselor 2014 National Education Conference Saturday, June 7, 2014

Kansas City, KS

Pre & Post Transplant www.vimeo.com/94205333 Karen Erickson, Assistant Executive Director of Community Engagement, Alpha-1 Foundation. Janice, Karen's sister, will also share her experience as a caregiver. Other transplanted Alphas will be on the call and be available during the Q & A session.

Alpha-1 Pre & Post Transplant Virtual Support Group Telecall - March 11, 2014

Public Policy www.vimeo.com/90784878 Speaker:

Miriam

O'Day,

Former

Senior

Director

of

Public

Policy,

Alpha-1

Association/Alpha-1 Foundation Dallas Alpha-1 Education Day - March 22, 2014

Research Registry www.vimeo.com/166855207 Speaker: Charlie Strange, MD, Professor of Pulmonary and Critical Care Medicine at the Medical University of South Carolina Topic: Alpha-1 Lung Disease and the Importance of Alpha-1 Foundation Research Registry

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