fall 2014 Northern California Chapter
MS Connection Newsletter first-year advice from a muckfest ms alum On October 11, 2014, over 1,500 muckers will take on a 5K course of incredible obstacles and muddy pits, trenches and craters. We sat down with Muckfest MS Indianapolis alum Angelena Colon to get her advice for first-timers:
What 3 words would you use to describe MuckFest MS?
Muddy. Comical. Support.
MuckFest MS: Why did you initially decide to register for MuckFest MS? Angelena: I love running on forest trails that wind up and down every which way. When I stumbled across the National Multiple Sclerosis Society’s new MuckFest MS event, I knew it was the perfect opportunity to merge my love for running and support research for those living with MS. Being diagnosed with MS can be challenging at times, but embracing the idea of making others aware is inspiring.
Angelena Colon at muckfest ms 2013
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INSIDe THIS ISSUE
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save the date: annual meeting 2014
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focusing on progressive ms
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managing your money with MS
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UPDATE
02
MS connection: FAll 2014
Letter from the president
new beginnings Dear Friends,
“
The Society’s promise around research is clear: STOP disease progression, RESTORE what’s been lost, and END MS forever. Addressing the challenges of everyone affected by MS requires a similar focus and promise.
”
Connect with us:
1-800-344-4867 NationalMSSociety.org/can can_info@nmss.org Like us: /msnortherncal Follow us: /msnortherncal Photobucket: /user/NationalMSSocietyNorCal/library/
The fall season reminds me of new beginnings and to take time to practice gratitude. We have great opportunities this quarter to connect with others on important topics such as financial wellness, healthy living, and networking. Whether you join us in person through a self-help group, attend one of our programs, or connect online, the National MS Society is here to help you find the information and resources relevant to you. The 2014-2015 academic year has begun, which means Scholarship Program applications will be available soon (see page 13). The Society funds academic scholarships for promising individuals affected by MS, and many of our scholars go on to do incredible work in the fields of medicine, physical therapy, advocacy, and more! We continue to see great strides in research progressive MS (see page 5) and look forward to sharing a research update during our November Annual Meeting (see page 3). Our jam-packed fall event season comes to a close with our first ever MuckFest MS San Francisco (Oct. 11) and our 31st Bike MS: Waves to Wine. We would like to thank our donors and supporters for raising over $2.7 million which will help to fund scientific discoveries in MS. We’re already excited for Walk MS 2015 and will be opening registration in November. We hope you will join us for this incredible event that connects our MS communities across the country. As the leaves change color and warmer clothes are in order, know that the National MS Society is always walking beside you and grateful to have you as our partner in creating a world free of MS. Warm regards,
MSConnection.org Janelle Del Carlo Chapter President, Northern California Chapter
nationalmssociety.org/can | 1-800-344-4867
Annual Meeting & Research Update Monday, November 17th | 6:00p.m. - 7:00p.m. Teleconference Celebrate a year of progress at our Annual Meeting. You’ll hear an update on the Northern California Chapter with 2014 highlights from our Chapter leadership. Join other members, volunteers, and staff to commemorate the Chapter’s accomplishments in the past year and to elect the 2015 Board of Trustees.
Research Update When it comes to a world free of MS, enough is not enough. The National MS Society is leaving no opportunity wasted in accelerating
National Multiple Sclerosis Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Board Chair: Angie Lai Chapter President: Janelle Del Carlo Editor: Emily Hazlett © 2014 National Multiple Sclerosis Society, Northern California Chapter
03 research projects to STOP MS in its tracks, RESTORE function that’s been lost, and END this unpredictable disease forever. Dr. Alexandra Goodyear is committed to providing excellent clinical care to patients and conducting research to advance our understanding of how to treat and live well with MS. She was awarded the Sylvia Lawry Clinical Trials Fellowship by the National MS Society and completed a Masters in Epidemiology during her training. She has served as a Principal Investigator on multiple MS studies, and is committed to providing the opportunity for all MS patients to participate in research. To register, please call 1.800.344.4867 or visit nationalMSsociety.org/CAN. n
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.
04 ...continued from page 1 I want to educate others and advocate for those dealing with MS and MuckFest MS is one way to do it. MuckFest MS: What is your mindset going into your second MuckFest MS adventure?
MS connection: FAll 2014
moments. The excitement before the race, running through the mud pits, laughing as we conquered the obstacles, donating our mud drenched shoes, watching my nephew play in the Lil’ Muckers pit, chowing down on some delicious food after the race, picking up our race swag with MuckFest gear, and seeing all the people there to support the cause was truly amazing.
Angelena: I conquer the obstacles and mud the same way I am conquering MS, one step at a time. Each obstacle brings on a different challenge, but all are possible to overcome and move forward from. MS can be messy just like the mud pits, and underneath it all, I am still the same person I have always been. I’m motivated to see a difference in life for everyone living with MS by inspiring people to live their lives to the fullest every single day. It is truly inspirational to see so many people come together to support the research efforts of the National MS Society. Last year, the entire day was filled with gratitude and support, both from people I knew to complete strangers that cheered me on through every obstacle. I left the event knowing that I wanted to come back again because my heart was touched by the efforts of everyone involved, and I was inspired to make a difference through more awareness.
MuckFest MS: If you had once piece of advice for a first-time mucker, what would it be?
MuckFest MS: For what part of the event are you most excited?
register today!
Angelena: I’m excited for the event in its entirety! The whole day at last year’s race in Indianapolis was filled with memorable
Angelena: MuckFest MS is an awesome opportunity to get dirty and have fun raising awareness for a disease that can be messy at times. The support of others brings strength and emotional support to those living with the disease. Come ready to get dirty and have fun!
You can still join in on all the mucky fun by visiting www.muckfestms.com and registering for MuckFest MS San Francisco on October 11 at Solano Fairgrounds. n
nationalmssociety.org/can | 1-800-344-4867
05
RESEARCH
Focusing on progressive MS The achievements of Dr. Barry G.W. Arnason, the 2014 recipient of the Dystel Prize for Multiple Sclerosis Research, are many, and include such significant contributions as laying the groundwork for the development of immune-directed therapies and understanding how the different components of the immune system work in MS. However, some of his discoveries hold particular significance for people with progressive forms of MS. Much MS research has focused on the role of T cells, which are a specific type of white blood cell that somehow become turn on the central nervous system and produce damaging inflammation. However, “I don’t think T cells have much to do with progressive MS,” said Dr. Arnason. “I think the problem is activation within the central nervous system of microglial cells, and that activation is the key to potential treatments of progressive MS.” Dr. Arnason made these comments in the opening lecture at the 2012 Annual Meeting of the Consortium of MS Centers in San Diego, while emphasizing that MS research focus more on progressive MS. Dr. Arnason’s research into progressive MS has also helped to uncover evidence that damage to the spinal cord leads to the increased activity of certain docking sites on immune cells, suggesting a vicious cycle of immune changes,
Howard weiner, dr. barry arnason, dr. timothy coetzee damage and increased immune activation. Along the way, he also contributed to the better understanding of other disorders such as Guillain-Barré syndrome and myasthenia gravis. Dr. Arnason is also planting the seeds for highquality MS care in the future. His institution, the University of Chicago Medical Center, at which he is the James Nelson & Anna Louise Raymond Professor of Neurology, recently received an Institutional Clinician Training Award from the Society. These awards provide five years of funding to support the establishment of a world-class training program, thereby attracting the best MS clinicians over multiple years. The Dystel Prize is awarded jointly by the National MS Society and the American Academy of Neurology. The award is made possible through a special fund established in 1994 by the late Society National Board member Oscar Dystel and his late wife Marion in honor of their son John Jay, an attorney whose promising career was cut short by progressive disability from MS. To learn more about Dr. Arnason and past Dystel recipients, visit www.nationalMSsociety.org/dystel. n
06 advocacy
using your experience to create change by melanie rowen
When I was diagnosed with MS, I didn’t recognize it as an opportunity to get involved in work that could make a difference in people’s lives. I was focused on my health, and on the unexpected and overwhelming cost of my disease-modifying drugs. My health plan treated MS medications as “specialty drugs,” and I learned that I was responsible for 30% of their cost. My bill for just that one medication was almost $900 per month. My employer wasn’t able to offer a different insurance plan, so I paid those co-pays for more than two years, eventually going into credit card debt. It was incredibly stressful. And of course, because MS is a chronic disease and these are preventative therapies, there was no end in sight. I felt powerless, because not taking disease-modifying drugs would increase my risk of more serious (and expensive!) health issues in the future. But I really could not afford my co-pays in the long term.
MS connection: FAll 2014
After two years, I changed medications and was able to get into a co-payment assistance program, which brought my costs down to a level I could manage. But I also recognized that there were many people with MS and other chronic conditions facing the same overwhelming costs without any assistance. It seemed outrageous, but I didn’t think there was anything I could really do about it.
Connecting for a Cause Then one day, I saw an e-mail from the Northern California Chapter of the National MS Society with the subject “We Need Your Help.” They were looking for people to share their personal experiences with high prescription drug costs. I responded to the e-mail, and the next thing I knew, I was sharing my story with reporters at a press conference about a bill in the California legislature that would limit insurance companies’ ability to establish a “specialty tier” in order to charge extremely high co-insurance for certain drugs. I felt like I was contributing to something important. This turned out to be the beginning of my advocacy career with the National MS Society. I am part of the Northern California Chapter’s Government Relations Committee, which brings volunteers like me together with chapter staff to advocate for laws that will help people with MS. We can tell our stories to legislators, helping them to understand what changes are needed and why. continued on page 11...
nationalmssociety.org/can | 1-800-344-4867
...continued from page 6 This year, for example, we are advocating in California for a bill (SB 1052) that would make it easier for consumers choosing a health plan to figure out which plans cover their specific medications and how much they will cost. Now that the Affordable Care Act has limited the amount of out-of-pocket costs each person can be responsible for under their health plan, we are also supporting a bill (AB 1917) that would allow health plan enrollees with extraordinary medical needs to spread their out-of-pocket costs out across the year, instead of spending the full amount at the beginning of the year, as many of us with high out of pocket costs would do otherwise. Additionally, we are advocating for a bill to address the fact that many people with MS are unable to get quality care from the providers included in their health plan’s network. The bill would ensure that California’s Department of Managed Health Care (DMHC) can monitor and enforce health plan network adequacy requirements. All across the country, too, National MS Society volunteers are reaching out to their congressional representatives about issues important to people with MS. In August, MS activists met with their representatives in their local offices to remind them of the importance of funding research for the MS treatment pipeline, to encourage them to ratify the UN Convention on the Rights of Persons with Disabilities, and to advocate for the Ensuring Access to Quality Complex Rehabilitation Act.
11 Getting involved in advocacy with the National MS Society has given me a constructive channel for some of the frustrations I have experienced because of MS. It has also introduced me to some wonderful people: my fellow MS activists, and the chapter staff whose hard work makes it easy for all of us to plug in. If you think you might like to get involved, please reach out and join us – we need your help! n Melanie Rowen was diagnosed with MS in 2007 and is an Advocacy Volunteer with the Northern California Chapter of the National MS Society.
dial & learn
Join us from the comfort of your own phone for this free teleconferences. Pre-registration is required. Prior to the teleconference, you will receive a toll-free dial-in number.
tips for People with MS and Their Partners: Planning for the Future Tuesday, November 18th | 2:00 - 3:00 p.m. Tuesday, November 20th | 7:00 - 8:00 p.m.
Presented by Dick Bell of Financial Education Partners Foundation and Bradley Frigon of the National Academy of Elder Law Attorneys, this session will provide helpful information, including legal and financial considerations, for carepartners and people living with MS. Visit www.nationalMSsociety.org/telelearn or call 1-800-344-4867 to reserve your spot.
12 financial wellness
Financial Wellness Webinar Series In addition to the financial counseling services offered by the National MS Society, members can also participate in a free Financial Wellness Webinar Series designed to help people living with MS plan for their financial futures. Presented by the National Disability Institute, each webinar features expert guests with backgrounds in law, finance and public benefits will share their insight on topics including taxes, employment, social security and credit. All resources and information presented in the series will be tailored to address the unique challenges MS can present.
MS connection: FAll 2014
“Learning financial fundamentals is one of the first and most important steps in building lifelong financial wellness,” said Michael Morris, executive director of National Disability Institute. “This free webinar series offers people living with MS a unique opportunity to learn more about their money and available options to help them make more informed choices about their financial futures.” Each webinar consists of a one-hour expert presentation followed by a half-hour set aside for questions from participants. In addition, guest speakers who live with MS will offer a peer perspective during each webinar. There is not cost to participant, but registration is required. Visit www.realeconomicimpact. org/FinancialWellness to register for any of the webinars in the series. n
upcoming webinars
social security disability benefits: informed decision making
Wednesday, October 15th | 1:30 - 3:00 p.m. Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits help millions of American’s that are unable to work gainfully due to disability. This webinar will highlight the basic criteria the Social Security Administration examines for eligibility, and will focus on Work Incentives available to disability beneficiaries that allow for a successful transition to work.
credit: accessing it, understanding it, using it wisely
Wednesday, November 19th | 1:30 - 3:00 p.m. Maintaining credit involves many aspects of our financial lives including, but not limited to, setting up a bill paying system to ensure that obligations are met on time, as well as prioritizing debts with a plan of reduction or outright elimination. We will also explore the safest ways to access your credit report, check the accuracy of information, and understand your credit score and standing. Visit www.realeconomicimpact.org/FinancialWellness to register for these webinars.
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nationalmssociety.org/can | 1-800-344-4867
living with ms
online newly diagnosed orientation Are you Newly Diagnosed with multiple sclerosis? A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you are facing. This web based program will be conducted by Dr. Elizabeth Crabtree, Assistant Clinical Professor of Neurology at UCSF and Director of Patient Program Development at UCSF’s MS Center. Dr. Crabtree will address the most common concerns for people who are newly diagnosed. This orientation provides an excellent opportunity to have any questions you may wish to ask answered and learn more
about the resources available to persons with multiple sclerosis. A phone and computer with internet access will be necessary to join this program. Thursday, November 13th 6:00 - 7:30 p.m. Please call 1-800-344-4867 or visit nationalMSsociety.org/CAN to register for this program. n
scholarships
2015 application opening soon! MS shouldn’t stand in the way of an education. The National MS Society’s scholarship program exists to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The National MS Society raises funds to support scholarships, establishes award criteria and directs the evaluation of all applications.
Who can apply? Individuals who have MS or have a parent with MS are eligible to apply as long as they meet all eligibility criteria. To learn full details about eligibility and the application process, please visit nationalMSsociety.org/ scholarship. Applications will be available in the fall each year and must be submitted by the January deadline. Scholars will receive notification of awards in May. n Imani, diagnosed in 2006
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MS connection: FAll 2014
The Terry Rossman MS Golf Experience 14
ms connection: fall 2014
In 2009 two Northern California volunteers named Doug Thomas and Mat Rossman created The Terry Rossman MSGolfexperience to fund Terry’s Closet and honor her memory and battle to end MS. Terry’s Closet helps to provide assistance for the cost of durable medical equipment for people living with MS who cannot afford the insurance co-payments on prescribed equipment or do not have insurance that covers their durable medical equipment needs. This program was developed to bring meaningful financial assistance to as many people living with MS as possible, with emphasis on helping people maintain their independence, safety, health and quality of life.
This year, the MSGolfexperience raised over $14,000, bringing its total contribution to Terry’s Closet to over $50,000 over the last six years. Call 1-800-344-4867 to learn more about Terry’s Closet and visit www.msgolfexperience.com to donate or play in next year’s tournament.
finish ms
crawl 4 the cure
Inspired by her mother, Jill, who has lived with multiple sclerosis since 1980, Ashley Kumlien ran her first marathon-a-day across the country, starting in San Francisco with only a motor home and a single crew member to spur her on. As she made her way from the west coast to the east, she went through ten pairs of running shoes and lost 16 pounds. It was more than half a year later, on September 28, 2010, when she reached the steps of City Hall in New York City, raising awareness and more than $56,000 to stop MS. Finish MS offers runners, cyclists, and distance athletes of all types the chance to create a world
free of MS while pushing their own personal limits. If you’re registered for any race event, you can race on behalf of the National MS Society. n
www.FinishMS.org
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nationalmssociety.org/can | 1-800-344-4867
DIY Fundraising
crush ms raises over $16,000! On August 2, 2014 ten wineries united at Reid Family Vineyards in Napa to “crush MS.” The inaugural event raised $16,000 and had over 400 attendees from all over Northern California. Participating wineries included Cakebread Cellars, Counter Punch Wines, Reid Family Vineyards, and many more. A beautiful atmosphere, fabulous wines, delicious food and marvelous music made for a delightful and successful evening. This “Do It Yourself ” fundraiser was the brain child of Karen, Kirk and Kevin Reid and Julie and Steve Hare of local Napa winery, Counter Punch Wines. Kevin and Julie both live with MS and wanted to use their Napa wine connections to do something about MS. And so, Crush MS was born. “A mutual friend suggested that I contact Kevin to share my excitement and commitment to give back to the MS world. Kevin, who also has MS, responded that his family runs a small winery. Counter Punch Wines and Reid Family Vineyards came together for a common cause,” said Julie. The mission of Crush MS is to raise funds, promote awareness, find a cure, and help people live well with MS now.
Julie Hare & Kevin Reid, crush ms founders Julie, Kevin, and their wide circle of supporters intend to make Crush MS an annual fundraiser and create a non-profit, the Crush MS Foundation, devoted to raising even more money to promote awareness, fund research for a cure and “crush MS” forever. This successful event is a great example of the wonderful things that can happen when people with a common passion come together to do something about MS. To learn more about how you can get involved in “Do It Yourself ” fundraising, please visit nationalMSsociety.org/CAN. n
Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158
Walk to create a world free of mS Walk MS connects people living with MS and those who care about them. It is an experience unlike any other — a day to come together, to celebrate the progress we’ve made, and to show the power of our connections.
2015 registration opening in november WalkMS.org | 1.800.344.4867
Be Inspired. Get connected. Walk MS. Southern California