SPRING 2015
National Multiple Sclerosis Society
MS CONNECTION Colorado-Wyoming Chapter
Colorado-Wyoming Chapter Newsletter
Walk to create a world free of MS.
INSIDE THIS ISSUE:
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WHY WE WALK
MS ACTIVIST
RESOURCES AND SERVICES
CREATIVE GIVING
Letter From the President Dear Friends, This is an exciting time of year at the Chapter. The weather is warming, the days are longer and after months of planning we are at the forefront of our 2015 event season. This year we will host 19 signature events between April and September, which provide an array of walking, hiking, mucking, cycling and dining opportunities for supporters to come together, engage with the society and make a difference for everyone affected by MS. These popular gatherings are consistently well supported by communities across Colorado and Wyoming for many reasons: They are places of connection and shared experience. People affected by MS are assured they do not have to face MS alone when they see hundreds—even thousands—of supporters. For many, events are an entry point; Walk MS is often a first introduction to the Society for someone newly diagnosed. For others, it’s an annual rite, when families and friends come together to show their support of each other and to celebrate progress. They raise awareness and visibility and create thousands of “Awareness Champions.” Everyone who participates is sharing their journey and learns more about MS and resources available. Continual sharing is crucial; the earlier people connect to resources, the better they are able to live their best lives. They generate vital funds. The generosity of all our supporters cannot be overstated. Their commitment has allowed our Chapter to invest more than $1 million annually to
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Society research – research that has yielded 12 FDA-approved therapies in just two decades. At times participants express that they are reluctant to ask friends, neighbors, peers and family for a pledge of support because they feel it places a burden on them. Don’t feel guilty. By not reaching out and asking, you haven’t given them the opportunity to be part of your journey. Why make that decision for them? They are times to celebrate and recognize the vast progress that has occurred and to focus on challenges that remain ahead. To date there are no treatments for progressive MS, but the Society is working diligently to change that by investing in the exciting work of the Progressive MS Alliance to ensure advancements continue. They are also times to share your thoughts and feedback. This is your Society and the board and staff want to hear from you. Your voices help to identify resource gaps and guide us to offer the programs and services needed now as we work to end MS forever. Take time to let us know how we can support you. We are listening! Sincerely,
Carrie H. Nolan Carrie.Nolan@nmss.org 900 S. Broadway Suite 250 Denver, CO 80209
Newsletter Distribution—If you have a change of address or would like to receive MS Connection electronically, please call 800-344-4867. If you or someone you know has MS—Studies show that early and ongoing treatment with an FDAapproved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional, or contact the National Multiple Sclerosis Society (NMSS) to learn about ways to help manage multiple sclerosis and about the current research that may one day reveal a cure. The NMSS does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The NMSS assumes no liability for the use of contents of any product or service mentioned. Information provided by the NMSS is based on professional advice and expert opinion. Information provided in response to questions do not constitute therapeutic recommendations or prescriptions. The NMSS recommends that all questions and information be discussed with a personal physician. The NMSS is dedicated to a world free of MS.
©2015 National Multiple Sclerosis Society, Colorado-Wyoming Chapter Chapter President Carrie H. Nolan Board of Trustees Kyle Ocasek, Chair Travis White, Chair Elect Brandt Wilkins, Immediate Past Chair Kathryn Spritzer, Secretary Jason Sibley, Treasurer Brooke Allen, MD Carl Berglind Whit Conant John Corboy, MD Chris Doerr Rob Hartnett Marley Hodgson III Darrin Johnson Carin Knickel Deborah O’Neil Michael Pierce Richard Raymond, MD Shauna Giddings Schmitz Jo Wilson Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage
MS CONNECTION: SPRING 2015
IN THE NEWS EVENTS
SUMMER ENERGY ASSISTANCE
Check Out the Colorado Medical Exemption Program This summer many Colorado residents living with MS will benefit from the Colorado Medical Exemption Program (CMEP), a special energy assistance program that is offered by Xcel Energy and is overseen by the Chapter. Most Xcel customers pay higher electric rates in the summer due to tiered billing rates, which are based on usage. CMEP offers a lower rate for all electricity used and does not charge extra—or tier-up costs— for using more electricity than base rates from June through September. To participate, Xcel Energy customers must meet all of the following three qualifiers: • Have medical conditions that require high electric use during the
summer and/or use life support equipment in their homes • Use more than 830KWH of power each summer month • Have a household income of less than 250 percent of federal poverty guidelines Applicants should expect to receive letters of acceptance in mid to late May. More than 550 households in Colorado benefitted from this program in 2014. For more information on this energy assistance program, contact Tim Bergman at 303-698-5409.
We volunteer to end MS. 2015 Volunteer Opportunities: • Self-Help Group Leaders • Practical support such as household repairs or chores • Peer support online or by phone • Administrative assistance
• DIY: Do It Yourself Event Organizers • Internships • Professional opportunities • MS Activists and more!
Sign-up: cowyvolunteer@nmss.org or 303-698-7470 cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
NEW BOARD MEMBER
Michael Pierce
Michael Pierce is the vice-president of sales for TriZetto Corporation, a Cognizant company, and brings a broad range of payer business operations and information technology (IT) background to the Chapter’s board of trustees. Pierce’s current responsibilities include the negotiation and sales of large scale software and services transactions for TriZetto, which provides healthcare IT solutions to payers and providers, as well as integrated healthcare management services. Pierce holds a Bachelor of Science in computer science from Purdue University and has more than 25 years of healthcare payer experience. Prior to joining TriZetto, he consulted with some of the nation’s largest health plans while working at Accenture, a management consulting and technology services firm. He has also held IT leadership positions with several of the nation’s largest health plans. He is a strong supporter of MuckFest MS, the Chapter’s annual muddy obstacle fundraising event, and currently fields the largest MuckFest MS team in the country. He created the MuckFest MS Denver Volunteer Committee and is using his leadership to grow the event’s attendance by 1,000 participants.
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EVENTS
Closer to a Cure, One Step at a Time! Shelley Stafford has always been athletic and enjoyed outdoor sports. In fact, she was the first ski instructor in the U.S. to be certified at age 16. It was her love of running, cycling and skiing that lured her to Colorado in 1980. At age 17 she experienced an episode of double vision, which quickly passed, but would be the first harbinger of MS. Symptoms didn’t surface again until 1986 when one side of her body became paralyzed, just three months after her wedding. “I was sent to an ICU and given massive doses of prednisone because they thought I’d had a stroke,” she said. Her MS diagnosis came as a surprise. Later Shelley would be shocked again when she learned that the strong father she so admired had been living with MS since the 1950s. In her father’s time, warm water baths
WALK TO CREATE A WORLD FREE OF MS. walkMScolorado.org walkMSwyoming.org
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were used as a way to diagnose MS. which really describes my attitude. I By the mid-1980s Shelley had a very keep participating because I want to different diagnostic experience thanks to ensure there will be a cure, if not in my significant technological advancements. lifetime, for the next generation,” Shelley She became the first person in Colorado emphasized. to be diagnosed by a new technology Join Shelley and thousands of others who MRI – using the state’s first MRI machine. step out for Walk MS and be part of the Always a trailblazer, she has participated movement that will end MS forever! n in four clinical trials and is encouraged by the work of drug companies. Although there are currently no treatments for the Secondary-Progressive MS she now lives with, Shelley is able to maintain her independence thanks to Ampyra, which helps her to get in and out of bed daily, and Molson, her spunky service dog.
I keep participating because I want to ensure there will be a cure.
“I had incredible friends who did many events together as a group, which is how I connected with both Walk MS and Bike MS. I plan to participate in my 30th Walk MS this year, even though I’ll be rolling in a wheelchair instead of walking. Walk MS means a lot to me - the wonderful recognition and support gets you through and suddenly you don’t feel so alone in the battle. “I walk on Team Never Give Up,
Casper
Colorado Springs
Cheyenne
Northern CO
Glenwood Springs
Cody
Pueblo
Boulder County
Gillette
May 9 May 9 May 9
May 16 May 16 May 16
May 30 June 6
Sept. 12
Your Participant Center is equipped with easy online tools to simplify and automate your fundraising activities through e-mail, Facebook and your very own Walk MS web page. Get started: register and log on today to personalize your fundraising
MS CONNECTION: SPRING 2015
GET OUT AND GET SOCIAL
EVENTS events to trying a corn maze or simply getting together for pizza and beer. It provides a great way to make new friends and creates a special network of people who are happy and active, and can also relate to experiences and challenges presented by MS.
We live in an active society and people enjoy getting together to share common interests, whether it’s attending a book club or sporting event, gardening, painting, cooking, biking or dining. The Chapter found that hostTheSocial was established by the ing gatherings that offer a variety of Chapter five years ago and today is fun activities and socializing was the active in Denver, Fort Collins and right combination to bring together Cheyenne. TheSocial’s gatherings young people with the common bond are posted on the Chapter’s website of MS, which gave rise to TheSocial. calendar. “We were looking for a way to bring people in their 20s and 30s together, but quickly found that a traditional ‘support group’ was not attractive to them,” said Jenny Tauchman, a Chapter community outreach manager. “Not surprising, they are young and want to do the normal things young people do – which is simply to get together, hang out and have fun.“ Fun is the operative word. TheSocial gatherings range from meeting up for Happy Hour or attending sporting
Want to learn more or start TheSocial in your community? Contact: Northern Colorado Jenny Tauchman, 970-494-5988
Online Support Groups
Wyoming Molly Palmer, 307-433-9590
MSconnection.org support groups have different purposes and serve specific populations, such as young adults, carepartners, or people who are newly diagnosed.
Denver and other communities LeeAnn Bellum, 303-698-5407
Saturday, July 25 Keystone Resort Come and enjoy the beautiful Rocky Mountains as we climb our way to end MS! Routes range from 2–12 miles.
Visit hikeMS.com to learn more and register! cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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EVENTS
Champions bikeMScolorado.org bikeMSwyoming.org
What does it take to be a Bike MS Champion? It’s part drive, part commitment and a lot of inspiration! Chapter Bike MS Champions are nominated by staff for all they do to support Bike MS, while living with MS themselves. To honor these very special people, every Bike MS Colorado and Bike MS Wyoming participant will receive a bandana inscribed with the names of
these MS warriors as a reminder of why thousands hit the pavement for a cure each year. When you see these champions, thank them for their dedication and courage. Check out what Bike MS means to a few of the Chapter’s 2015 champions:
Being part of Bike MS is such an inspiration and I learn so much from “ people as their stories unfold. The energy and connections made—the entire ride experience is so rewarding.”
Brooke Hatfield, diagnosed 2009
People can become afraid after hearing the words “you have MS,” “ but don’t let MS stop you. You can do anything you want if you keep at
it. Bike MS is a way for me to inspire others and help to end this disease forever.” Steven Vaughan, diagnosed 2001. Without events like Bike MS it would be hard to know how large the “ support system really is. It makes you want to do better for yourself and
everyone living with MS. Bike MS is almost like being on a sports team. It’s collective group of people in it for the same thing—going for a win!” Josh McMullen, diagnosed 2007
12 MS CHAMPIONS. 12 REASONS TO BIKE MS. These stories embody why we ride and are each an inspirational connection to our mission of creating a world free of MS. For complete stories from all 12 Bike MS Champions visit: bikeMScolorado.org
6Tracey, diagnosed in 2005
MS CONNECTION: SPRING 2015
ADVOCACY
Chapter Advocates Go to Washington The Chapter was well represented at the National MS Society’s Public Policy Conference held in early March in Washington D.C. The Colorado-Wyoming delegation, including Alison Jones, volunteer member of the Government Relations Committee, Chapter President Carrie Nolan, Executive Vice President Sharon O’Hara and Director of Community Engagement Bruce Barnum, met with representatives and senators to advocate for funding and legislation that would benefit people living with MS, including:
advances that are now available to promote function and independence for people with significant disabilities. This act would create a separate benefit category under Medicare CRT, which would streamline access to individually configured products and would also exempt CRT products from Medicare’s “in-the-home” restriction, allowing beneficiaries to utilize their mobility devices and be active members of their communities.
Requesting $10 million for 2016 for the MS Congressionally Directed Medical Research Program (MS CDMRP)
The bill, which is sponsored by Rep. Diana DeGette, would create a national data collection system at the Centers for Disease Control and Prevention that will track and collect data on the epidemiology of neurological diseases, including MS. Currently a national data collection system does not exist in the U.S.
This program funds innovative research. It is funded through the Department of Defense through the Defense Appropriations Act. In 2008 Congress established a specific MS program within CDMRP. Although Society representatives have advocated for increased support of the program, the MS CDMRP has been flat-funded for the past three years.
Passage of the Access to Quality Complex Rehabilitation Technology (CRT) Act CRT refers to medically necessary products such as power wheelchairs, seating and positioning systems, and other specialized equipment that require evaluation, fitting, design, adjustment and programming. Although CRT is currently included with Medicare’s durable medical equipment benefit, created more than 40 years ago, it does not account for the vast technology
Passage of the Advancing Research for Neurological Diseases Act of 2015 (H.R. 292)
Information collected through a national system will provide a foundation for evaluating and understanding many MS factors such as geographic clusters of MS; variability in racial and ethnic risk, changes in the gender ration, disease burden, and healthcare practices and utilization. This is important as the last national study of incidence and prevalence of MS was conducted in 1975.
From left: Carrie Nolan, Sherry Perry, Scott Melka and Cecilia Crawford
Advocacy 101 Becoming an MS Activist is a simple way to improve not only your own life, but the lives of others living with MS. Learn about tools and resources to share your story and influence your elected officials to effect real change in public policy. Register at nationalMSsociety.org/ advocacy101.
ONLINE WEBINAR Thursday, May 14 6:30 - 7:30 p.m. PT 7:30 - 8:30 p.m. MT 5:30 - 6:30 p.m. AKT
Visit the link below to watch a video and learn how you can drive change as an MS Activist.
nationalMSsociety.org/activistvideo
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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ADVOCACY
MS ACTIVIST
Rallying for MS Research
By Wendy Macklin, PHD, Chair, Department of Cell and Developmental Biology
When I finished graduate school and decided I wanted to research neurologic diseases, I went to work with Dr. Marjorie Lees, one of the first women studying myelin. She inspired me to build my research around understanding myelin and oligodendrocytes, which are damaged in multiple sclerosis. Oligodendrocytes are special cells in the central nervous system that produce myelin, a substance that insulates and protects axons, which are the extensions of nerve cell bodies. Over the years, I have focused on identifying how myelin is made and repaired in the brain. There has been exciting progress over the past two decades in identifying new therapeutics that reduce the immune component of MS, but there remains damage in the central nervous system. Much of my research — and the research of scientists like me — is funded by the National Institutes of Health (NIH).
We cannot afford to lose a new generation of scientists who can identify crucial aspects of treatment for MS. So, last September at the 2014 Rally for Medical Research, I joined more than 300 activists, doctors and researchers from across the country to discuss with Congress why NIH funding must be a top priority. The largest source of funding for medical research in the world, the NIH
has been a driving force behind decades of medical advances. Unfortunately, Congress’ funding of the NIH has been flat for years; in 2013, the NIH awarded 640 fewer research grants than in 2012. We built amazing connections during meetings with state legislators, and I know that what I had to say informed their understanding of the importance of NIH funding. It’s easy to learn more about cutting-edge research that will change the face of MS. Get involved in whatever way you can! n
Get Involved! Participate in studies, give, advocate and help us end MS forever. nationalMSsociety.org
PERSONAL STORIES DRIVE CHANGE Everyone with multiple sclerosis has a personal story, an experience or collection of life events and circumstances that influence who he or she is, and the unique perspectives that he or she holds. Living with MS is an integral part of that story. MS alters lives. It can transform everyday activities into challenges. MS activists share their stories in the hope that they will inspire positive change — not just for them, but for all people living with MS. Their collective voices raise awareness about MS, educate public officials and drive change. Their stories come in many forms. Some MS activists e-mail their legislators when they receive MS Action Alerts, adding a personal note to share their individual
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perspectives. Some join their state’s Government Relations Committee to drive advocacy work in their community or become District Activist Leaders and build personal relationships with their elected officials. Others attend MS State Action Days at their state capitals, emphasizing the importance of MS advocacy priorities. And some people travel to Washington, D.C., to share their stories at the National MS Society’s annual Public Policy Conference.
Share your story and become an MS activist: nationalMSsociety.org/ advocacy MS CONNECTION: SPRING 2015
E
RESEARCH
MOVING FORWARD
Promising Research Leads Significant research progress was made in 2014, offering new leads that are driving efforts to stop multiple sclerosis, restore lost function, and end MS forever.
Stopping MS
In addition, there were positive results from a number of lifestyle and wellness-related studies, as follows: • In a large sleep study that surveyed more than 2,300 people with MS, researchers found that 70% reported having at least one sleep disorder, but that 12% or fewer had received a diagnosis of, or treatment for, a sleep disorder. Treating sleep disorders experienced by people with MS could significantly improve quality of life.
• A National MS Society• A clinical trial showed strong evifunded team shed new dence that a specific type of memory light on immune cells training improves learning in people STOPPING THE DISEASE RESTORING WHAT’Sdiscovering BEEN LOST ENDING MS FOREVER known as macrophages, with MS and benefits other aspects a way to tell the difference between of quality of life. Additionally, a pilot good and bad types of these imstudy revealed that clinical and MRI mune cells in mice with an MS-like improvements were maintained six disease. This research opens up months after training ended. possibilities for therapies that target bad cells and spare good cells. • In a preliminary study of a salsa dance program for people with MS, • Researchers in the U.K. found that researchers found improvements in for every year that passed after a gait and balance even three months person with MS stopped smoking, after the 4-week program ended. the risk for progression was reduced The Society is now funding a larger, by as much as five percent. longer study that may lead to the use • In a multicenter study, African of dance as physical therapy for MS. Americans with MS were found to • The Society convened a Wellness have more visual impairment and Strategy Meeting with leaders in the faster thinning of the nerve fibers in fields of diet, exercise and psycholthe back of the eye than Caucasians ogy, including individuals who also with MS. directly live with MS, to identify gaps in knowledge and programming and to map out next steps for how these gaps might best be addressed. Restoring Lost
approach to understanding how subtle changes in genes may lead to the risk of developing MS and other immune diseases. • Researchers in Sweden and California showed that adolescent obesity increased the risk for MS, and that this risk increased substantially in those with specific immune genes. • Investigators found that those who reported taking cod liver oil at ages 13-18 had nearly half the risk of developing MS compared to those who never took cod liver oil or took it at other ages. n
Function
• A number of potential MS therapies that hold RESTORING BEEN LOST ofENDING MS FOREVER theWHAT’S possibility myelin repair moved forward in clinical trials, including an approach that tested theSTOPPING abilityTHEofDISEASE an individual’s own RESTORING WHAT’S BEEN LOST mesenchymal stem cells to inhibit immune mechanisms and augment intrinsic tissue repair processes when infused into the veins of people with relapsing forms of MS.
Ending MS Forever • In studies involving over 80,000 people, the International MS ENDING MS FOREVER Genetics Consortium identified more than 159 genetic variations related to MS. • Collaborators at Yale, MIT, Harvard and elsewhere reported a new
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
nationalMSsociety.org/ research
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RESEARCH
About the International Progressive MS Alliance RESEARCH UPDATE
International Progressive MS Alliance Meeting In March 2015, 80 scientists and clinicians from around the world with the International Progressive MS Alliance convened in Boston to discuss what is known and not known about the chain of events and mechanisms (known as "pathogenesis") leading to progressive MS, which is characterized by the gradual loss of function. This is a key priority research area for the Alliance because unearthing details of these events will identify critical pathways that could be targeted by new therapies aimed at stopping progression
and restoring function for the estimated 1 million people who live with a progressive form of MS. Outcomes of the meeting will help Alliance members plan ongoing research priorities, and will be summarized in a white paper and published to share ideas with the larger scientific community. By bringing the world's scientific knowledge and determination to the task of better understanding progression and therapeutic targets, the Alliance will accelerate the development of treatments that change the world for people with progressive MS. n
Stay updated on the work of the International Progressive MS Alliance:
Established in 2012, the International Progressive MS Alliance is a growing global initiative to end progressive MS. The Alliance began by bringing together the world’s leading experts in multiple sclerosis to identify the critical knowledge and treatment gaps where progress must be made to achieve breakthroughs necessary to change the world for people with progressive MS. The Alliance now has 11 international members and represents the first time MS Society’s around the globe are funding research together.
progressiveMSalliance.org
The Alliance’s four priority areas are: 1 3
To better understand progression so treatments can be identified and tested Conduct clinical trials to test agents
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To design shorter, faster trials that measure patient outcomes Develop and evaluate new therapies to manage symptoms
The Alliance's work is crucial as up to 65 percent of people with relapsing-remitting MS will eventually develop secondary progressive MS. In September 2014, the Alliance awarded its first round of research grants, funding 22 projects. The Alliance will invest $30 million to tackle progressive MS over the next six years.
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MS CONNECTION: SPRING 2015
RESOURCES
Make the Chapter Your First Call for Information, Resources and Support We are your Society. We have professional staff that will provide assistance with a wide range of resources. • Respite care resources • Home safety evaluation • Home or vehicle modifications • Adaptive recreational resources
All of the answers you need with just one call:
Vehicle Modification Gives Back Freedom Hair stylist Violet Lotito was just 24 years old when she suddenly began to experience double vision. Although her optic neuritis turned out to be short lived, an MRI revealed she had MS. “From day one, the Society was there to answer questions and give information on what to do next. This was extremely helpful, because of the confusion and earth-shattering news of the diagnosis. My family and I had many questions and the Society was there with a helpful list of what to do next and also told me about close support groups, which was really helpful,” Violet said. Violet stayed in touch with the Society over the years and eventually entered nursing school, which took up most of her time until she was unable to move forward with her plans. “I had experienced numbness in my fingertips for a long time, so I was used to it, but at the end of 2007 the entire right side of my body went numb. Again the numbness episode was short, but I slowly began to lose mobility in my legs.”
• Disability guidance • Health insurance evaluation • Physician referral • And more!
1-800-FIGHT-MS (344-4867)
By 2014 Violet found she had to make a hard choice. “I was just 35 years old and still considered myself young, so I didn’t want to use mobility aids. Then I had two close calls in my car and decided I needed to put my ego aside and get help. I again turned to the Society, which has been one of the only constants throughout my disease and a solid support base of information.
I was just 35 years old and still considered myself young, so I didn’t want to use mobility
aids...
“I contacted the Chapter and within 48 hours financial support for my vehicle modification was approved. This was so helpful. Now I can drive safely and I have total freedom to get around and do day-to-day activities. Having mobility again is truly life changing it’s wonderful for me and a great help for our growing family,” she added.
How To Access Assistance
“People need to reach out to the Society. The answers to your questions and resources to help with assistance needed are just a call away!”
Learn more about the Independent Spirit Fund on page 14 of this issue.
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
Call 1-800-FIGHT-MS (800-344-4867) for a list of vendors that provide vehicle modifications. Financial assistance may also be available through the Chapter’s Independent Spirit Fund, which was established to help people living with MS maintain their independence. n
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RESOURCES
ACCESSIBILITY
Transportation Options Don’t let multiple sclerosis keep you from getting where you need to go, whether to a medical appointment, the grocery store or a restaurant for a dinner with friends. If you no longer drive because of MS symptoms such as vision issues or spasticity, there are other options for transportation if you know where to look.
Reach out The first place many people with MS look for help with transportation is their own social network. Don’t be afraid to ask friends and family members for a ride: often they are happy for a chance to help out and spend time with you. And they can always say no if it’s inconvenient for them at the time. (In which case, try rescheduling!) If an appointment is ongoing—a weekly visit to a physical therapist for instance—you might arrange a regular trip with a friend or family member. Sweeten the deal with an offer to pay or split the cost of gasoline, for instance. Even treating the driver to a cup of coffee can help.
rail services. A good place to start exploring your city or county’s public transit system and its accessibility options is publictransportation.org. Here, you can search by state for what’s available near you. Or you can visit the American Public Transportation Association’s website atapta.com/ resources/links for a list of public transit websites for all 50 states, Washington D.C., and Puerto Rico.
costs of transportation to and from medical appointments. Check with your health insurance company to see what they offer. In addition, most individuals enrolled in Medicaid are eligible for transportation to and from medical care. Learn more at medicaid.gov. In general, before you call to arrange transportation through your insurance company or Medicaid, follow these tips:
Explore your area’s accessible public transportation options
• Have your member ID number ready
The Americans with Disabilities Act (ADA) requires that any transportation provided to the general public must be available to people with disabilities. The ADA also requires all public transit agencies to provide paratransit services to people who cannot use fixed-route public transportation because of their disability.
Go public
The Easter Seals Project Action project, a partnership with the U.S. Department of Transportation, Federal Transit Administration, was commissioned in 1988 to improve access to public transportation for people with disabilities. Their website at projectaction.org offers a wealth of information on how people with disabilities can use public transit systems confidently and safely.
Typically, the most affordable way to get around is public transportation, which can include bus routes or light
Some health insurance companies may provide transportation or cover
Other opportunities to access a ride or joining a carpool may exist in your community, including places of worship, community centers and service organizations. Ask your healthcare providers if they might know of other patients who drive or a carpool that can help get you to their offices.
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More options
• Have the address for pick up and the address of your destination ready • Know the time and date of the appointment • Specify if you will need a lift or if you need a cab • Specify if you’re bringing someone with you If you don’t get the answer you are looking for, ask who else you can contact. This goes for any service you’re inquiring about. Often times, agencies can offer additional information even if they can’t provide the specific service.
Connect with a MS Navigator for information about transportationrelated resources:
1-800-344-4867
MS CONNECTION: SPRING 2015
RESOURCES ADVERTISEMENT
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Presented by Allen Bowling, M.D., Ph.D.
Light meal will be served Biaggi's Ristorante Italiano
Interact with a leading MS expert and others living with MS
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Learn about a therapeutic option for MS
William Shaffer, M.D.
Little America Hotel
Neurologist Northern Colorado Medical Center
2800 West Lincolnway Cheyenne, WY 82001
Allen Bowling, M.D., Ph.D.
Hacienda Colorado
Neurologist Neurology Care / CNI University of Colorado
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Tamara Miller, M.D.
Marriott Hotel
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350 East Horsetooth Road Fort Collins, CO 80525
Space is limited so RESERVE YOUR SPOT TODAY! ONLINE: livemsevent.com PHONE: 1-800-397-8082
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1805 Briargate Parkway Colorado Springs, CO 80920 6/5/2015 6:00pm
6/6/2015 10:00am
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Find an MS event in your area by visiting livemsevent.com Sponsored by Acorda Therapeutics®, Inc.
MS3254
UPCOMING PROGRAMS Walking Poles Programs Montrose: May 5, 12 Pueblo: May 9 Windsor: May 9 Colorado Springs: May 16 Boulder: May 16 Denver: May 21, 28, & June 4 Cheyenne, WY: July 12, 19, 26
TheSocial Fort Collins Brewery Tour Saturday, May 2 11:30am - 1:30pm New Belgium Brewery 500 Linden St. Fort Collins, CO 80524
For more information, check out our online calendar: cureMSco-wy.org
#stayconnected
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
Knowledge is truly empowering The National MS Society offers an extensive variety of programs, services, resources and connection opportunities for people living with and affected by MS, including family members, caregivers and other members of their support systems. These resources can be accessed in person in your community, online, by phone and by mail.
Information where you are! Get connected with us on our social media channels today. 13
GIVING providing a 2:1 match for every dollar donated through September 30, 2015. That means that each dollar you donate will provide $3 of MS research! You can be recognized as a member of the Center for a gift of $1,000 per individual or $1,500 per couple and attend annual meetings with the scientific team to discuss their research and progress. n
MAXIMIZED SUPPORT
Gift Matching Opportunities
If someone offered to double – or triple every dollar you donate to the Chapter, wouldn’t you take advantage of that opportunity to increase the impact of your gift? The Chapter has two limitedtime opportunities available to do just that, thanks to generous donors who are supporting Society programs and research and want to inspire you to do the same.
Double Your Gift and Help People Remain Independent Now through June 30, every gift to the Independence Spirit Fund (ISF) will be matched, dollar for dollar – up to $25,000 – thanks to a generous gift from Alan and Linda Englander. “It was really a very simple decision,” said Linda, whose daughter lives with MS. “When we learned the benefits of this Fund, we wanted to lend our support and encourage other people to give too,” she said.
the ISF will help people remain selfsufficient, which is a precious part of life that people don’t want to surrender. Support ranges from implementing home and vehicle modifications, purchasing specialized medical equipment and applying technology to aid connectivity to providing financial planning and guidance to assist with accessing disability insurance. Large or small, all are factors that support continued independence.
Triple Your Gift and Advance Local Research A generous donor has made a challenge grant to the Chapter to support the work of the Collaborative MS Research Center, which is located in Colorado. The Center brings together investigators from the fields of neuroscience and immunology to explore brain cell interactions and their impact on nerve damage and repair.
Founded several years ago through the generosity of Chapter supporters Brandt Wilkins and David Alexander, the Independent Spirit Fund is focused on generating resources that will specifically help people living with MS remain physically, socially and economically independent.
Led by principal investigator Wendy Macklin, Ph.D. at the University of Colorado Denver, the Center’s researchers have already discovered new clues about how damage to myelin occurs in the body, which will contribute to the development of therapies that will stop MS progression, prevent further damage and restore lost function. With an eye on the future, the Center is also intent on attracting young investigators into the field of MS and currently has two research instructors in training.
There are many ways your gift to
This grant triples every gift received by
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For more on matching gifts, contact: Sophia.Conti@nmss.org or 303-698-5434
When we learned the benefits of this Fund, we wanted to lend our support and encourage other people to give too.
the
Independent Spirit Fund Independence for People living with MS
Your gift to the Independent Spirit Fund provides access to vital services, equipment, modifications, and technology that allows individuals with MS to remain safe in their homes, mobile and connected to their families and community.
cureMSco-wy.org
MS CONNECTION: SPRING 2015
GIVING
How it works
You shop. Amazon gives. AmazonSmile is a simple and automatic way for you to support the Colorado-Wyoming Chapter every time you shop, at no cost to you. When you shop at smile.amazon.com, you'll find the exact same shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to our Chapter.
CREATIVE GIVING
Chapter supporters often use their creativity to develop fun ways to use their time and talents to raise funds and awareness to end MS. Sometimes that creativity spurs a new Do It Yourself event. Other times, it’s just a matter of doing something a little bit differently, which in the Yastrows' case resulted in a big payoff. Diagnosed in 2005, Phil Yastrow became involved with the Chapter and started fundraising as part of his personal quest to Kill MS. Fast forward to 2015 – Phil will once again be participating in Bike MS, Walk MS, Hike MS and MuckFest MS events and is one of the Chapter’s top fundraisers,
raising more than $235,000 to date. He is always sharing his MS story and engaging people for support, but it was a suggestion to his largest supporters – his parents – that ended up doubling their annual gift by changing their approach to an annual fundraiser.
Mom and Dad have been great leaders and contributors in my quest to KILL MS, and that is the best proof that I got my MS from environmental conditions, not genetics In 2011 the Rim Golf Club and Chaparral Pines initiated a golf tournament to honor his father Shelby Yastrow for his service to the golf courses and residential communities in Payson, Arizona. Instead of gifts, Shelby and his wife Sybil asked that donations be made to support National MS Society research as a way to help their son. The Shelby Day tournament was a local hit and raised $20,310 to support Society research
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
• Visit smile.amazon.com on your web browser. • Choose our Chapter as the charity of choice and continue to shop. • Add smile.amazon.com to your Bookmarks to make it even easier to return and start your shopping at AmazonSmile.
in the tournament’s first two years. Knowing his parents were very interested in stem cell research, Phil approached them in 2014 about No Opportunity Wasted, a fundraising campaign to accelerate Society research. They committed to raise at least $10,000 through their annual Shelby Day golf tournament and additionally decided they would match every dollar raised at the event. Inspired by the incentive, the tournament added contests, such as Mulligans for MS, and raised $11,565. With the Yastrows' additional match of $11,565, they increased the amount of their gift by 100 percent raising a total of more than $23,000, which exceeded the combined fundraising of the first two years! “Mom and Dad have been great leaders and contributors in my quest to KILL MS, and that is the best proof that I got my MS from environmental conditions, not genetics,” said Phil. n
Help inspire others by sharing how you leveraged your fundraising creatively! Contact: Sophia.Conti@nmss.org or 303-698-5434
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Stay Connected
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
GET INVOLVED! SAVE THESE DATES: Larkspur, CO May 16
Celebrating breaking down the barriers to living with MS
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Northern CO Sept. 11 Denver, CO Sept. 17 NEW LOCATION: Westin, Downtown