WINTER 2013 WESTERN PENNSYLVANIA CHAPTER
MS CONNECTION NEWSLETTER
Western Pennsylvania Chapter
INSIDE 03 THIS ISSUE
LIVING WITH MS: FACING COGNITIVE CHALLENGES
CHECK UP ON YOUR HEALTH
RESEARCH: FOCUS ON RESEARCH
2013 DEVELOPMENT WRAP-UP!
MS CONNECTION: WINTER 2013
LIVING WITH MS
LETTER FROM THE PRESIDENT
JOHN PLATT, ANNE, DOUGLAS MINER AND SHERIE LAMMERS AT THE 2013 NATIONAL LEADERSHIP CONFERENCE IN DENVER
CONNECT WITH US ONLINE: Western Pennsylvania Chapter nationalMSsociety.org/PAX email@example.com Like us: /MSWesternPA
2013 NATIONAL LEADERSHIP CONFERENCE HIGHLIGHTS
NOVEMBER 7- 9, DENVER COLORADO “EVERY CONNECTION COUNTS”
Each year, outstanding volunteers and Society staff leaders from across the country join together at the Society Leadership Conference to celebrate, share, network and reenergize to increase our individual and collective impact. I had the opportunity to attend the 2013 National Leadership Conference with 3 outstanding Chapter leadership volunteers, Doug Miner, Chapter Board Chair, David Strassburger, Chapter Board Member and East Region Volunteer Leadership Council Member as well as John Platt, Chair, PA Government Relations Committee. John was inducted into the Advocacy, Volunteer Hall of Fame at the conference and also spoke to all those in attendance about the power of connections. You can view his awe inspiring video clip on the Chapter’s Facebook Page. At the 2013 Society Leadership Conference, new connections were made with current and emerging volunteer leaders, including trustees, program leaders, advocacy leaders, team captains, fundraisers, lead donors, corporate sponsors and Society staff leaders.
Follow us: @MSWesternPA
Our commitment to making every connection count to create a world free of MS has never been more apparent or important. Please check out the National MS Society & Chapter website in the next couple of weeks for photos, videos Watch us: and individual vignettes that you can use to help connect current and emerging user/NationalMSSociety volunteers to Join the Movement.
On the Cover: Season’s Greetings Artwork
~ Anne Mageras
NATIONALMSSOCIETY.ORG | 1-800-344-4867
FACING COGNITIVE CHALLENGES TOGETHER
TO-DO LISTS CAN HELP THOSE WITH COGNITIVE ISSUES STAY ORGANIZED
BY MINDY B. ALPERT & ANDREA S. KANTOR
We both live with multiple sclerosis and this is our story. Mindy was diagnosed with MS in 1998, and she has cognitive challenges, as well as other invisible symptoms. As Mindy’s partner since 1999, Andrea lives with MS in a different way, because the disease affects their life together.
MANAGING AS A TEAM In 2001, Mindy left a successful career in the financial industry as a result of severe fatigue and her cognitive challenges. She doesn’t always
NATIONAL MULTIPLE SCLEROSIS SOCIETY Western Pennsylvania Chapter 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867 nationalMSsociety.org/PAX Chairman: Douglas Miner, Esq. Chapter President: Anne Mageras Editor: Hannah Spear Design: Jennifer Skinner © 2013 National Multiple Sclerosis Society, Western Pennsylvania Chapter
understand what people are saying, and sometimes has to ask them to slow down and repeat it, especially when they are giving instructions. This is especially true when there’s background noise or when she’s with people she doesn’t know well. Mindy also has trouble with word retrieval and sometimes with expressing herself clearly. It can be very frustrating when people get impatient, and the pressure makes it even harder. Sometimes she can’t remember what someone has said if continued on page 4 Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
MS CONNECTION: WINTER 2013
Facing Cognitive Challenges Together continued from page 3 she doesn’t write it down. It takes a lot of energy she’s struggling. At times people don’t believe that for Mindy to focus and get important things Mindy has challenges and limitations because done, and she is generally more capable early she looks fine. Having cognitive issues is tough in the day. She also has difficulty multitasking, and, like many people living with symptoms of organizing and prioritizing. To help with this, MS, Mindy grapples with them every single day. she uses a week-at-a-glance calendar as a to-do list to stay organized, and she uses a highlighter to emphasize priority items. Her BlackBerry is also a great tool because she can send herself reminders. IT IS NOT SUPPORTIVE TO TELL
IT TAKES A LOT OF ENERGY FOR MINDY TO FOCUS AND GET IMPORTANT THINGS DONE. Andrea has cut back on certain types of socializing, including parties and get-togethers that begin later in the evening. She could go alone, but she would rather be with Mindy. When they first got together, Andrea noticed that Mindy had trouble focusing on and following conversations at gatherings, and that she would disengage from the conversation. When Mindy is struggling to find a word, Andrea often jumps in and says it for her, and then Mindy can go on with whatever she was saying. Sometimes Andrea repeats any questions to give Mindy more time to phrase a response. This interaction happens very naturally, and most people don’t even notice what is really going on between us.
A UNITED LIFE Mindy sometimes tells people about her cognitive issues so that they can hopefully understand when
SOMEONE THEY DON’T REALLY HAVE A PROBLEM.
ANDREA, AT LEFT, AND MINDY FACE MS TOGETHER. However, Mindy has developed effective ways of functioning and compensating for the challenges, so that much of the time, the challenges are not obvious to most people. When an issue does come up, some people may think they’re being supportive when they say that everyone develops memory problems as we get older. But this is very invalidating because Mindy has had serious cognitive challenges since her 30s and she had to leave her career decades before she would have chosen to do so. It is not supportive to tell someone they don’t really have a problem.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
We try to help people understand that the best way to show their support is by being patient, accommodating us when we suggest an early dinner, and asking us how we’re doing from time to time. Over time, we each have developed new perspectives on living with Mindy’s cognitive challenges, and we do it the way we face everything else in our lives, united as a supportive couple. n
5 UTILITY ASSISTANCE PROGRAM DESCRIPTIONS
CAP (Customer Assistance Programs) • Income requirements • A program set up for making regularly monthly Mindy B. Alpert is an active board member payments, which are less than the current bill, in for the National MS Society’s Long Island exchange for continued utility service. • Utilities: Duquesne Light, Penelec, Columbia Gas of Chapter, which honored her service in 2007 Pennsylvania, Peoples Natural Gas, and Equitable Gas by endowing the Mindy B. Alpert Scholarship CARES (Customer Assistance Referral and Evaluations) Fund. In 2010, she was elected to the Society’s • A program that helps families with family National Board of Directors, where she chairs emergencies, divorce, unemployment, or medical the investment committee. emergencies. The program provides support and direction. Andrea S. Kantor is a manager in the financial • Utilities: West Penn Power, Duquesne Light, industry providing banking products and Equitable Gas, Columbia Gas of Pennsylvania, and Peoples Natural Gas. services to the nonprofit sector. She is also LIURP (Low-Income Usage Reduction Program) a certified executive coach who has run her own • The program lowers the amount of electricity or gas consulting business. used each month. A free home weatherization consultation may be available. National Multiple Sclerosis Society’s • Utilities: Duquesne Light, Peoples Natural Gas, United Way workplace giving Columbia Gas of Pennsylvania, and Equitable Gas. designation code for Allegheny County LIHEAP (Low-Income Home Energy Assistance Program) only is: 898 • Income requirements. • The program provides financial assistance to help to pay energy bills. ADVERTISEMENT • Utilities: Peoples Natural Gas, Columbia Gas of T he L if t P rofessional Pennsylvania, and Equitable Gas. AU T H O R IZED • This consists of 3 components: Cash Benefits, D I S T R I B U TO R CRISIS, and Weatherization. C H EN E Y S TA I R & Hardship Funds W H EEL C H A I R L I F T S • A program that offers grants for folks that “fall through the cracks” after other resources have been exhausted. B ar r ie r Fre e St air lif t s • Utilities: Columbia Gas of Pennsylvania 275 Cur r y H ollow Road Pit t sb urgh , PA 1523 6
412- 653 - 6 45 0 1 - 8 0 0 -28 8 - 5 6 2 5 FA X 412- 653 - 6 415
Note: Contact Universal Services at 1-800-537-7431 for information and a location of an intake agency near you.
MS CONNECTION: WINTER 2013
NATIONALMSSOCIETY.ORG | 1-800-344-4867 ADVERTISEMENT
CHECK UP ON YOUR HEALTH JULIE STACHOWIAK, PhD
When I think of my health, multiple sclerosis dominates my thoughts. I run through my inventory of symptoms that are acting up and medications that are causing side effects. Usually, it’s only when I have something like a cold or a stomach virus that it occurs to me that there is more to my physical health than my MS. Unfair as it might seem, people with MS are subject to the same health problems as people who are not living with the disease. We have the same lifestyle and aging issues. We have to consider preventive care for things like heart disease, high blood pressure and cholesterol as we age. Women need to get mammograms and pap smears on a regular basis. We need to keep up with immunizations, as well as visits to dentists and eye doctors. (Visit www.nationalMSsociety.org/ preventivecare for preventive care recommendations.) There are also special risks that we have that are directly or indirectly related to our MS, such as: • Osteoporosis: People with MS are more likely to have osteoporosis (loss of bone
density). This is due to a number of factors, including limited mobility, low levels of vitamin D (which is essential for calcium absorption) and excessive use of corticosteroids (for instance, many Solu-Medrol courses over a short period of time). Your doctor can order a bone scan to test for osteoporosis. • Depression: Depression can be a primary symptom of MS. It can also be indirectly caused by the losses and unpredictability of MS. Your neurologist or general practitioner should be able to refer you to a psychologist or psychiatrist to treat your depression, preferably one with experience treating patients with MS. • Vitamin deficiencies: People with MS tend to have low levels or deficiencies of vitamin D and vitamin B12. Ask your general practitioner about tests and a treatment plan if needed. Make an appointment to see your regular doctor and get the rest of yourself checked out. The last thing that any of us needs is additional health problems that could have been caught early or prevented by taking action. Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally published at blog. nationalMSsociety.org.
Chartwell Specialty Pharmacy is a LOCAL pharmacy providing you the convenience and personal service you deserve. Our highly skilled pharmacists and insurance professionals will assist you with easy refills, co-pay assistance, and free delivery allowing you to spend more time on the things that matter!
WORKING WITH MS: DON’T DO IT ALONE. RESOURCES AVAILABLE TO ASSIST YOU
Are you considering changing jobs? Are you looking for that next step in your career ladder? Have you been out of the workforce but thinking about returning to work? Do you have questions about disclosure in the workplace or how to accommodate your symptoms on the job? Employment issues can arise any time there is a change in your work situation or a change in your MS. When faced with employment questions, it is important to know that there are several resources available to help. The National MS Society can address employment questions and can refer you to employment resources. Employment-related publications are also available. Call 1-800-3444867 to speak with an MS Navigator or visit www.nationalMSsociety.org/employment. The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy. JAN provides technical assistance and support regarding accommodations, the Americans with Disabilities Act (ADA), disclosure, and selfemployment for people with disabilities. JAN can be reached at 1-800-526-7234 or visit
MS CONNECTION: WINTER 2013
http://askJAN.org for a wide variety of resources and publications. Each state has a vocational rehabilitation (VR) agency whose goal is to assist individuals with disabilities to gain and maintain employment. For a full listing of vocational rehabilitation agencies, visit http://askjan.org/cgi-win/TypeQuery.exe?902. Employment services are also available from your local one-stop employment center. The goal of the one-stop is to assist job seekers, with or without disabilities, in finding employment. If you choose to selfidentify that you are living with MS, the office may be able to provide some additional support services. To find your closest one-stop employment center, visit www.servicelocator.org/. Oftentimes, people with MS who are seeking employment would prefer to work for employers who may be doing targeted outreach to job seekers with disabilities. It is important to remember that you must still be qualified for the jobs for which you are applying. The employers on these sites may be recruiting through these resources in order to increase diversity in the workplace. There are several job boards that post jobs from employers who are actively recruiting people with disabilities, including the following: • Equal Opportunity Publications (EOP) Career Center: www.eop.com/career.php
NATIONALMSSOCIETY.ORG | 1-800-344-4867 • GettingHired: www.gettinghired.com/ • National Business & Disability Council (NBDC): www.viscardicenter.org/services/ nbdc/ Please be aware that the National Multiple Sclerosis Society does not endorse these sites but shares them because they are considered valuable information. You may want to include them in your job search and add them to the sites you visit when looking for available positions. Working with MS is possible and you don’t have to do it alone. Get connected to resources to stay on top of your employment options. n ADVERTISEMENT
UPCOMING PROGRAMS MS, Cognition and Mood: Implications and Treatment Options
Monday, February 24, 2014, 6:00 - 7:30 pm Holiday Inn, 7410 South Ave., Boardman, OH Register online at nationalMSsociety.org/PAX
Guest Speaker: Eugenio Peluso, Ph.D. The lecture will examine common issues faced by MS patients regarding cognition and emotional functioning. Education and treatment options will be discussed to assist patients and their families with future planning and continuity of care.
May of 2014, Location TBA To learn more about this program or to pre-register contact Pam at 412.261.6347. The program offers couples living with a chronic illness to find ways to strengthen and/or develop skills for daily living that affect their relationship. The program includes education, group discussion, individual & couple exercises, workbook/homework activities to help build a healthier more satisfying relationship.
Newly Diagnosed Weekend Retreat March of 2014, Location TBA To learn more about this program or to pre-register contact Pam at 412.261.6347.
This program is for individuals diagnosed with MS in the past 3 years. Educational sessions will focus on key issues that newly diagnosed individuals encounter.
FOCUS ON MS RESEARCH
A joint meeting held May 29 to June 1 by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research. Here is a selection from more than 200 presentations on research seeking to stop MS in its tracks, restore function to those who have MS and to end the disease forever.
STOP MS Researchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans were significantly reduced; however, there was
MS CONNECTION: WINTER 2013 significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits for people with MS of this experimental procedure. A study at the University of California, Los Angeles, tested whether male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women.
RESTORE: REHABILITATION Three separate studies reported results on falling issues. • Debra Frankel, vice president, Programs, Services and Clinical Care at the Society, reported that participants in the Society’s Free from Falls program improved in balance and walking, and that the psychological impact of falls was reduced, even six months after the program. (For more on the Free from Falls program, call 1-800-344-4867, or visit www.national MSsociety.org/freefromfalls.) • At the University of Illinois at UrbanaChampaign, researchers found that fall risk
NATIONALMSSOCIETY.ORG | 1-800-344-4867 decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management. A Society-funded study at the University of Illinois at Urbana-Champaign found that videochat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety.
RESTORE: REPAIR Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.
END MS A Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Hispanic/Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanic/Latinos living with MS, visit mueveteMS.org. A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further, studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. To read more about the joint meeting and other recent MS research, visit www.national MSsociety.org/research or sign up at www.nationalMSsociety.org/signup to have MS eNEWS delivered monthly to your inbox.
12 SAVE THE DATES!
MAKE YOUR MARK DURING MS AWARENESS WEEK! TIME TO GET YOUR PLANS READY!
During MS Awareness Week, March 3-9, 2014, people all over the nation will come together to share, educate and build awareness. MS is a destroyer of connections -- it disrupts signals, separates minds from bodies and pulls us away from each other. It’s only fitting that connection is its greatest enemy.
MS CONNECTION: WINTER 2013 Write a letter to the editor: Write a short letter to your local newspaper explaining why it’s important that everyone join the movement. To make it even easier, you can download a template at nationalMSsociety.org/PAX, under the Take Action tab. Use a specialty license plate: Order a Pennsylvania National MS Society specialty license plate to display on your car. Speak out: Is there a business you frequent that could be more accessible? During MS Awareness Week reach out to the owner or manager, either in person or a letter. Explain that you have MS and how it affects you, and start a discussion about how the facility’s accessibility could be improved.
Visit the Western Pennsyvlania Chapter’s website for more information, nationalMSsociety.org/ What if we were able to connect everyone who has PAX and read more about our MS Awarness Week MS with those who treat and research the disease? plans in the next MS Connection in February/ What if everyone affected by or interested in MS March of 2014. n would stand together and work as a team to overcome this disease?
HOLIDAY GIFT PROGRAM
Get involved! Here are some ideas! TURN ANYTHING & EVERYTHING ORANGE! Get Political! Visit your legislators: Make an appointment to speak with your local, state and/or federal legislators. Tell them your story and how they can better serve you.
It is not too late to volunteer or give to the Holiday Gift Program! Each year the NMSS coordinates this program to provide gifts to people living with MS who reside in long term care facilities. Knowing that nursing homes and personal care homes can sometimes be lonely places, we strive to put smiles on the faces of these individuals and let them know that the National MS Society is thinking of them. To learn how you can get involved call Pam at the Western PA Chapter at 1 800.344.4867 or e-mail her at firstname.lastname@example.org.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
GIVE THE GIFT OF TIME: BECOME A MS VOLUNTEER! The National MS Society, Western PA Chapter would like to thank the over 150 event, office and support volunteers from this past year’s fundraising events. Here at the Society would like to stress how important our volunteers are to the 7,500 people and their families that have the courage to live with MS each day. We are proud to be a part of such a wonderful organization with such dedicated volunteers. Volunteers are key to any successful nonprofit organization. We are always in need of volunteers for events and office help. This year we are developing a “Volunteer Captain” program in which we will seek out experienced volunteers to help us get connected and stay connected to create a world free of MS. Interested volunteers can contact Susan Cook at 1-800-344-4867 or email@example.com for more information and to sign up! n
NEW IN 2013!
IF YOU’RE RACING FOR FUN, YOU CAN RACE TO FINISH MS! Race to Finish MS offers runners, cyclists, swimmers and distance athletes of all types the chance to create a world free of MS while pushing their own personal limits. Race to Finish MS is a unique program that unites individuals with the common goal of creating a world free of MS and completing an athletic endurance event. If you’re registered for any race event you can race on behalf of the National Multiple Sclerosis Society. You will have access to powerful online fundraising tools to turn your participation in any third-party race event into a race for a good cause. Experience, location and race distance are flexible. Get Started! 1. First, register with the third-party race event of your choice. 2. Then, register for Race to Finish MS program at nationalMSsociety.org/PAX. 3. Once you’re fully registered, you’ll have access to the National MS Society’s online tools to help you reach out to family, friends, and associates, tell your personal story, raise funds, and keep track of your fundraising efforts. That’s all there is to it! For more information visit nationalMSsociety.org/PAX or contact Susan at 1-800-344-4867 or at firstname.lastname@example.org. n
MS CONNECTION: WINTER 2013
members of the Sister Act Team at Ottawa Park in Toledo, Ohio. Every year, more and more members joined our team. Associates of the Sisters of St. Francis (men and women who partner with the Sisters of St. Francis in their mission and prayer) joined, along with co-workers and relatives.
STILL WALKING AFTER 20 YEARS BY SISTER KAREN ZIELINSKI, OSF
The Sisters of St. Francis don’t walk for the free fruit, pop, pizza, coffee and bagels. Although the goodies are delicious, the “Sister Act” Toledo Walk MS Team walk to do some serious good. In fact, we’ve been walking to help people who live with multiple sclerosis for 20 years now.
WHAT REALLY MATTERS Some Sister Act team members push themselves and walk 10 miles. Some walk a mile, while still others (like me!) walk a few symbolic feet. Distance does not matter. It is the faithfulness to helping our sisters and brothers with MS that matters. The opportunity to raise funds for MS research, programs and education propels us to fill out our Walk MS registration forms, collect pledges and show up on sometimes rainy and cold spring mornings.Twenty years ago, I met with the first
It wasn’t always easy to do. But the sisters were determined and faithful. Some years there were 30 walkers, some years three. No matter what, the Sister Act team walked each year.
HELP WHERE THERE’S A NEED Our Walk MS team is a continuation of the sisters’ ministry to help where there is a need. Sister Act team members have raised tens of thousands of dollars to end MS forever, to stop MS in its tracks. Ending MS means no one will receive an MS diagnosis again. Every step matters. Every dollar counts. Every person makes a difference. For the three Sisters of St. Francis who live with MS — Sisters Mary Lou Kurek, Elizabeth Zielinski and myself — the Sister Act team has walked right into our hearts. What a wonderful gift of healing! To learn about how to create your own team, visit www.walkMS.org, or call 1-800-344-4867. n Karen J. Zielinsi, OSF, a Franciscan Sister in Sylvania, Ohio, was diagnosed with MS in 1975. She is the director of Canticle Studio, a creative office of products which focus on spirituality and health, and the author of Hope and Help for Living with Illness (Franciscan Media).
NATIONALMSSOCIETY.ORG | 1-800-344-4867
11TH ANNUAL MS COOK FOREST MONSTER STOMP RIVER RIDE SUCCESS A ghoulishly good time was had by all at the 11th annual MS Monster Stomp, Saturday October 12th 2013 at Neshannock High School Stadium in New Castle, PA. Families, friends and the community of New Castle came together to walk, run or “goblin trot” to support those with MS. The MS Monster Stomp is a charity race for all ages to benefit The National MS Society. The proceeds of the event assist persons with MS and their families with medical equipment, in-home services, respire for care-givers, education, self-help groups and funding for research to find the cause and cure for MS. The MS Monster stomp is an effort to raise awareness about the disease and its impact on those close to home. We are happy to report that due to generosity of so many MS Monster Stomp participants and sponsors, the 2013 Monster Stomp for MS raised over $20,000! n
SPECIAL THANK YOU TO BOB & CARLEEN MCGANN, MS MONSTER STOMP ORGANIZERS
BIKE MS: SERIES
The Bike MS: 2013 Cook Forest River Ride, held on Saturday, September 21st was a huge success. This year we celebrated the 11th Anniversary of this great event and despite some soggy weather, more than 400 of our dedicated cyclists rode through the rain, and helped us to raise over $100,000. We also had wonderful local community support from businesses, police, fire police, park officials and volunteers. Thanks to all who participated and helped to make it such a huge success. n
BIKE MS: SAVE THE DATES June 7 & 8, 2014 Escape to the Lake July 19 & 20, 2014 Keystone Country Ride September 20, 2014 Cook Forest River Ride
REGISTER TODAY! BIKEMSWESTERNPA.ORG
MS CONNECTION: WINTER 2013
“LAISSEZ LES BON TEMPS ROULER!” DEVELOPMENT EVENT
LOBSTERFEST FOR MS Lobsterfest for MS was held Friday, September 27th at the Bavarian Hall in Altoona with a sold out crowd raising over $58,000.00 in hopes to one day create a world free of MS! Over 500 people came out to support the National MS Society and have a fun evening of dinner, dancing and bidding on their favorite auction items. The Keystone Branch of the Western Pennsylvania Chapter would like to thank Nancy Campbell & Donna Bon for Co-Chairing this wonderful event along with the committee & volunteers who gave of their time & talent!
SPECIAL THANK YOU GOES OUT TO ALL PARTICIPANTS! We would also like to thank our sponsors: M & T Bank & Saint Francis University, and our newest sponsors Highmark Blue Cross Blue Shield and Burgmeier’s Hauling, Forever Broadcasting & Hoss’s Steak & Sea House! n
“Let the good times roll” and join us to celebrate the revelry of N’awlins Mardi Gras at the National MS Society’s MSquerade. MSquerade is a unique and exciting Mardi Gras themed fundraiser, to benefit the Western PA Chapter. There will be beads, masks and Mardi Gras flare galore! Entertainment provided by Erie’s own Dixie Doodlers and DJ Shawn Steele of Memories in Motion. Silent & Live Auctions full of fabulous fun! The Bel-Aire Clarion Hotel will provide an evening menu chalk full of traditional Cajun style cuisine such as Cajun Chicken, Creole Crab Cakes, Oyster Poboy, and Cajun Corn Maque Choux . The night is full of energy and excitement N’awlins style. We invite you to wear your Mardi Gras best,“faisdo-do” (put the kids to bed) and dance the night away for a great cause. Mark your calendars for Saturday, March 1, 2014! This is an Erie event that can’t be missed. To purchse tickets or learn more about this event, call Colleen at 800.344.4867 or visit nationalMSsociety.org/PAX. n
NATIONALMSSOCIETY.ORG | 1-800-344-4867
MAKING HEALTH INSURANCE CHOICES Starting Oct. 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace—a component of the Affordable Care Act—begins enrollment for coverage to begin Jan. 1, 2014. The Web-based Health Insurance Marketplaces, (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes governmentcertified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as multiple sclerosis, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions. All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1st at www.healthcare.gov. Call the Society at 1-800344-4867 or visit www.nationalMSsociety.org/ ACAkickin for more information. n
WAYS TO GIVE
GIVE AT THE OFFICE Every year, people nationwide help create a world free of multiple sclerosis by contributing through their employer’s charitable giving campaign. Most campaigns kick off in the fall, so if you’ve been looking for an easy and efficient way to join the movement, act now. Simply designate your annual pledge to the National MS Society. Your donation will be automatically deducted from each paycheck to fund cutting-edge research and provide programs and services to help people affected by MS move their lives forward. Federal government employees and military personnel are eligible to participate in the Combined Federal Campaign (CFC), the nation’s largest workplace giving program. If you participate in the CFC, designate your gift to the Society using CFC#11409. If your company offers a workplace giving program, look for the Society listed under Community Health Charities. If your employer doesn’t offer a giving program, talk to your benefits administrator or call us at 1-800-344-4867, to see if we can help. n
18 WAYS TO GIVE
SIX TIPS FOR YEAREND GIVING Give to a cause you believe in while making your tax bite smaller by donating to the Society before December 31. These suggestions can help your gift be a successful one. TALK TO YOUR ACCOUNTANT Charitable gifts made now may reduce what you owe for 2013. Talk to an accountant or financial advisor who can help you determine the full impact of your gift. DON’T WAIT Get started now to make the best of 2013 tax legislation. For example, the extended charitable IRA legislation allows people aged 70½ or older to transfer lifetime gifts of up to $100,000 tax free using funds from their IRAs. This opportunity is only available through December 31, 2013. REVIEW YOUR PORTFOLIO If you have held appreciated stocks for more than a year, avoid the capital gains tax by giving the stock to the Society—and get a deduction for the full value of the stock. Stock gifts need to be transferred into the Society’s account by close of business December 31 for them to count in the tax year. For details, visit www.nationalMSsociety.org/giftsofstock.
MS CONNECTION: WINTER 2013 current tax benefits and guaranteed payments for life, but it also allows you to provide for meaningful future gifts to support people living with MS. Call the Society’s National Individual Giving Office at 1-800-923-7727 or email email@example.com for more information. We make it very easy to weigh the options. STICK WITH ORGANIZATIONS YOU SUPPORT—like the Society! According to www.charitynavigator.com, dividing money among many nonprofits diminishes its impact as each charity will spend a percentage on fundraising and overhead expenses. An easy way to make a lasting impact is to name the Society as a full or partial beneficiary of your retirement plan or life insurance policy. MAKE A LONG-TERM COMMITMENT Be a partner in the Society’s efforts to end MS. Please consider a gift in your living will or living trust, which will help to support our mission well into the future. We can only succeed with your continuing support. For more information on ways to give to the Society, call us at 1-800-344-4867. ADVERTISEMENT Don’t let MS keep you from your independence! Brant’s Driving School has over 30 years of experience in evaluating and training people with adaptive equipment. • • • • • • •
CONSIDER AN ANNUITY A charitable gift annuity provides you with
6 cars equipped with hand controls and steering devices One car with reduced-effort steering 2 lowered-floor minivans that are able to be driven from a wheelchair High-tech (EMC) controls including joystick and voice-activated secondary controls Full-size truck with hand controls and Bruno Valet Plus seat 2 Certified Driver Rehabilitation Specialists on-staff Office locations in Pittsburgh, Harmarville, and Johnstown We provide door-to-door-service!
NATIONALMSSOCIETY.ORG | 1-800-344-4867
YOUR GIFT MAKES A DIFFERENCE When considering your end of the year giving, please consider making a donation to support those affected by the challenges of MS.
Please make checks payable to the National MS Society, or complete the information below to process your credit card payment. All gifts are tax deductible. Return your form with payment to: NMSS, 1501 Reedsdale Street, Suite 105, Pittsburgh, PA 15233 Name on Card: ______________________________ Phone#: ____________________________________ Mailing Address: _____________________________
The NMSS relies on generous individuals, such as yourself, to help us “Create A World Free of MS”!
We thank you in advance for your generosity and your commitment to joining the movement to do something about MS NOW!
Card #: _____________________________________
Email Address: _______________________________
Exp. Date: _______________ CVV #: _____________
Your gift makes a difference!
Sincerely, Your contribution supports local programs and services and MS Research. Total Charged: $_______________ Chapter Staff and Board of Trustees Western Pennsylvania Please be part of the movement to create a world free of MS! Chapter, NMSS Signature: ___________________________________
Box of candy and package of socks for nursing home resident with MS
Bathroom grab bag
Book of Access tickets
Incontinence supplies for one month
Kids Camp bus ticket
Round trip wheelchair transport to MS Center
Cooling vest combo pack: cooling packs, wrist and neck wraps
One week emergency shelter for pet at Animal Friends
Yoga classes for 12 weeks
One window unit air conditioner
Light-weight travel wheelchair
One tank of heating fuel
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047
1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. To register call 1-800-344-4867, or visit nationalMSsociety.org/knowledge.
BE INSPIRED. GET CONNECTED. WALK MS. We are happy to announce that registration for Walk MS: 2014 has officially opened! Walk MS is more than just a fundraising event, itâ€™s a celebration for the entire community. The event itself creates a hope-filled and fun atmosphere for everyone affected by multiple sclerosis while generating a greater awareness of MS in the public at large. Families are drawn closer together, co-workers are united for a greater good, and people gain a better understanding of what MS is and how close we are to achieving a world free of this disease. Register now, connect with others and start fundraising today! n 04.12.14 Pittsburgh Point State Park 04.26.14 Indiana Indiana Area Sr. H.S. Uniontown Penn State Fayette
Bedford Shawnee State Park DuBois Lakeview Lodge & Conference Center Hollidaysburg Hollidaysburg Jr. H.S. Washington Tanger Outlet
04.27.14 Beaver Beaver Area H.S.
05.03.14 Erie Presque Isle State Park
Walk MS 2014 is presented by:
Visit walkMSwesternPA.org to register for a Walk MS near you!
05.04.14 Greensburg Lynch Field, Kirk S. Nevin Area Johnstown Univ. of Pittsburgh Meadville Roche Park 05.17.14 Bradford Pitt Bradfordâ€™s Blaisdell Hall
JUMP START THE 2014
WALK MS SEASON TODAY!