WINTER 2016
National Multiple Sclerosis Society
MS CONNECTION NEWSLETTER
COLORADO-WYOMING CHAPTER
Colorado-Wyoming Chapter
MARC H 7 TH -13TH
MS AWARENESS WEEK INSIDE THIS ISSUE:
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MEET THE BOARD CHAIR
MS INSPIRES
NEW! 5K RUN OPTION
LIVING WITH MS
LETTER FROM THE PRESIDENT Dear Friends:
As we welcome the New Year, our staff is well into detailed planning of our 2016 educational programs and fundraising events to ensure we create valuable, relevant informative and enjoyable experiences for our constituents. While each one of these activities are important, it is also critical to take time to recognize the impacts generated by these efforts that have – and are – transforming lives. Most supporters are aware that during the past 22 years, treatments for MS have increased from zero to 12-FDA approved therapies. Without question this is an extraordinary feat, but during this time there was also an acceleration of new approved therapies. It took 17 years for the first seven therapies to reach the market, but did you realize that it only took five years for the next five therapies to be approved? Our understanding of the causes of MS has also progressed - nearly 200 genetic variants have been identified and several risk factors confirmed. Additionally, the MS treatment pipeline has expanded and today there are more potential treatments in trials than any other time in history, including several on potential myelin repair. As a result, people with MS today are living much better lives than two decades ago and there is great promise for the future. Just imagine what breakthroughs the next decade will reveal. Our educational opportunities share current knowledge and connections that help empower people to choose how to take on MS at home and at the workplace, and our ambassadors increase awareness around issues and challenges facing the
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MS community and expand community support. When connections are made, people know they are not alone in this struggle. Your Chapter is the catalyst and point of connection that continually works to ensure that everyone who wants to do something can be part of fueling the progress that will end MS. This year, Bike MS Wyoming will move to Sheridan, a more central location. We have also added a 5K Run option to Walk MS Denver to engage another segment of the community and an opportunity to build your teams. We believe both these changes will increase participation. As you plan your activities for this year, I ask you to consider stretching your commitment just a little. Set a goal to grow your fundraising by 10 percent or to reach the next club level; send a few more emails to grow your team by two or three members or rally someone to join in and start a new team; open the door for a new sponsor by connecting the Chapter with an interested business. Small efforts are doable and collectively make a huge difference. The next time you ride, walk, hike, run, take on a muddy obstacle or share our mission, remember you are changing lives now and leading the way to a future where people will never again hear the words ‘you have MS.’ Together we are stronger.
Sincerely,
Carrie H. Nolan
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 Travis White, Chair Kyle Ocasek, Immediate Past Chair Deborah O’Neil, Secretary Jason Sibley, Treasurer Brooke Allen, MD Carl Berglind Whit Conant John Corby, MD Chris Doerr Marley Hodgson Darrin Johnson Carin Knickel Richard B. Levin Michael Pierce Brandt Wilkins Jo Wilson Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage
carrie.nolan@nmss.org 900 S. Broadway Suite 250 Denver, CO 80209
MS CONNECTION: WINTER 2016
IN THE NEWS
TRAVIS WHITE
MEET THE NEW CHAIR In October 2015 Travis White, Ph. D., owner of Travis White Communications, was elected chairman of the Chapter’s board of trustees. Dr. White joined the board in 2012 and has been active on the Chapter’s executive, governance and compensation committees, and its Awareness Task Force. After being diagnosed with MS in 2008 he became an active ambassador and fundraiser for the Society, which included cycling more than 3,700 miles across the northern U.S. in 2011 to elevate awareness of MS. To date he has raised nearly $95,000 for research. White’s professional career spanned 30 years in the software industry, where he worked for a number of leading companies, including J.D. Edwards in the
RICHARD B. LEVIN
NEW BOARD TRUSTEE Richard B. Levin, partner at Bryan Cave, LLC, and co-chair of the firm’s Digital Currency Team, has been elected to the board of trustees of the Colorado-Wyoming Chapter, National MS Society. Levin’s practice focuses on the representation of early stage and publicly traded companies in the financial services industry, including digital currency platforms, broker-dealers, hedge funds, alternative trading systems and exchanges. He represents these firms before the Securities and Exchange
Travis White
of awareness, advocacy, partnerships and funding. “I’d like to make the Society more visible throughout our very large territory and am especially interested in reaching young people and people living in rural areas. Advocating for the needs of people with MS is crucial, and this work may include addressing this issue of lowering drug prices and working for improved government policies." n
Denver area. He is an expert in software marketing after leading broad rebranding efforts for several public companies, he founded Travis White Communications, a boutique-consulting firm, to help businesses communicate more effectively. White earned his master's and doctorate degrees in information science and education from the University of Denver and is an Adjunct Professor at University College, University of Denver, where he teaches master's level courses in critical thinking, marketing and IT management. When asked what he hoped to achieve during his term as board chair, White identified several goals in the areas
“I would also like to develop more powerful alliances by enhancing partnerships with other MS or chronic disease nonprofits and continuing to build funding to further MS research and for better care for people with MS is always a priority”
NMSS Board Trustee
Commission, the Commodity Futures Trading Commission, and the Financial Industry and Regulatory Authority. Levin played a leadership role in the launch of two joint ventures of leading investment banks, including: Bank of America, Barclays, BlackRock, Citibank, Credit Suisse, Deutsche Bank, Goldman Sachs, JPMorgan Chase, Knight Capital Group, Merrill Lynch, Morgan Stanley, Northern Trust, State Street, and UBS, and also served in senior legal, business, and compliance positions in publicly traded and privately held financial services firms. He is a member of the Entrepreneurship Initiative Advisory Board of the Silicon Flatirons Center for Law, Technology, and Entrepreneurship of the University of Colorado, which consists of respected venture capitalists, successful
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
entrepreneurs, top executives at established companies and attorneys that represent early stage companies. Levin is also a member of the Board of Directors of the Aurora Public Schools Foundation, which supports the Aurora Public Schools District - the fourth largest and most diverse school district in Colorado. Levin is also the co-author of the chapter on U.S. regulation of virtual currencies for the “Digital Currency Handbook,” recently published by Elsevier.n
Richard B. Levin
NMSS Board Trustee
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LIVING WITH MS
environment to get things done?
SENATOR NEWELL THE IMPORTANCE OF ADVOCACY The Chapter has worked with state Sen. Linda Newell on issues facing the MS community during her time in the legislature and recently had the opportunity to hear her thoughts on accomplishments and insight on challenges ahead and the importance of advocacy.
Sen. Newell, since your election to the Colorado Senate in 2008, you haven’t veered from many tough topics ranging from child protection and suicide to cyber bullying. Often you have also been aligned with positions advocated by the MS Society during your tenure. As you reflect on your time in office, what have been your greatest accomplishments? It’s true that I haven’t always sponsored easy bills. That’s just not my style, I guess. I firmly believe you can’t let fear get in the way of doing what’s right for people,
Linda Newell Colorado State Senator and there have been too many critical issues for Coloradans that have required someone stepping up and speaking out. It’s hard to narrow my list because I’ve enjoyed it all, I’m probably most proud of our work for children, youth, and mental health. In my tenure in the Senate, we’ve had the most significant child welfare reform in the past two decades, we’ve created a Suicide Prevention Commission that is already making progress, and we’ve funded more in mental health than in the last 40 years. Overall, though, my greatest accomplishment has been to survive the Senate without losing my optimism and sense of humor!
As a consensus builder with a strong record of bipartisan support for your bills, how have you been able to foster common ground in an often-polarized
Well, it has certainly helped to have a background in conflict resolution! There’s barely a day that goes by at the Capitol or in my district that I haven’t used my facilitation or conflict management skills. I firmly believe that legislators want to pass effective legislation, and sometimes, they just need to be led to the middle of the aisle to do that. We may not always get all that we want, but we often see that small steps can make significant progress. I’m proud to say that close to 97 percent of my bills over seven years thus far, have had bipartisan support. That takes a lot of patience and a lot of hard work.
From a legislative perspective, what are the greatest issues ahead that will impact people who are affected by chronic disease and/or disabilities? Cost and continuity!! Without a doubt, we have seen increasing problems with people with chronic conditions being able to afford the complex care they need to thrive, let alone stay alive. They are frequently caught between the absurdly high costs of prescription drugs and the insurance plans denying access to care in an attempt to control costs. I’ve been struggling with finding remedies for this that can pass through the legislative process politically. Wouldn’t it be nice to get the care and drugs your own doctors prescribe?
Out of pocket costs for medications continue to rise, especially for people who need specialty drugs. What do you think can be done through the legislative process to address this issue?
Team "Capitol Crew" Rallying at Walk MS Denver
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Yes, I’ve been working on this for months with the Chronic Care Collaborative and MS Society folks to find some solutions that could work logistically, financially and politically. We’ve searched for even one small piece of the solution via national research and hours of stakeholder meetings and brainstorming sessions.
MS CONNECTION: WINTER 2016
LIVING WITH MS Given the current realities of the Colorado Legislature, the only one that might be able to pass this year is a prescription drug transparency requirement of the pharmaceutical companies; making public all the costs that go into research and development and manufacturing to effect a drug that would be $50,000 or more. Although that doesn’t lower any costs right now, at least we would get the transparency of knowing what the cost drivers are so we would know how to address those. I wish we could do more.
the bills become law. You’re welcome to contact my office at any time for questions or suggestions. I’m a huge proponent of citizen lobbying!
come down to the Capitol and testify in committee, visit with your own legislators, or call or email them. We (well, most of us) truly do listen to our constituents. As a group, you have an even more powerful voice. Let us know what you think BEFORE
Ironically, since arriving in the Senate in 2009, I had been leading the Capitol Crew at the annual Walk MS Denver and have sponsored legislation to renew the MS tax check-off and other supportive legislation for those living with MS. Little did I know
that five years later, I would be diagnosed myself. I am thrilled to say that I have no serious symptoms other than tingly fingers, and no new lesions since I was diagnosed, so I’m one of the lucky ones and life is wonderful. However, it has definitely made me more thoughtful of the healthcare policy decisions I make about chronic conditions.
Not too long ago, you shared that you live with MS. How has this disease impacted you personally? This is actually the first time I’ve shared this publicly.
"On Opening Day of the Is there anything else you would people living with MS and 2014 Legislative session, like their families to know? As a legislator, why is it important I was diagnosed with I know you know that the MS Society for you to hear from ‘regular’ multiple sclerosis with support network is like one big family, people advocating on behalf of one another with education, a cause? What advice would you my two daughters by my helping shared experiences and an occasional hug give to volunteer advocates? side. As many of you, I or pat on the back. Also, please know that What is the best way to have their are state legislators who are there for voices heard? will never forget that day. there support as well; reviewing and sponsoring I would love a whole article just on this! I thought I would have to policy that can make a positive difference It is critical for us legislators to hear in your lives. And for those who “don’t get radically change my life, from people with chronic conditions; it yet,” they’re waiting to hear your story.n real-life stories that show examples of and that my life may not positive or negative consequences of the ever be the same." policy decisions we’re making. You can Like Senator Newell at: facebook.com/SenatorLindaNewell
Or contact her at: linda.newell.senate@gmail.com
WEBINAR & TELELEARNING SERIES
SUSAN, DIAGNOSED IN 1988
WILLIAM (LEFT), DIAGNOSED IN 2002
BROOKE, DIAGNOSED IN 2009
Building Your Wellness Strategies
The 2016 Webinar & Telelearning Series brings together a collaboration of MS experts to help you build strategies to live your best life with MS. Each free webinar and telelearning program features two presenters with time for Q&A. Join us online or by phone on topics including:
March 8
Making Treatment Decisions
April 12
Research Updates
May 10
Stress Management and Relaxation
June 14
Traveling with MS
Schedule: 2nd Tuesday of each month from 8 to 9:15 p.m. ET *Additional employment topics scheduled for March 15 and 29. Topic and dates are subject to change. This program is possible thanks to the generous support of
and EMD Serono.
Register at mscando.org/webinar or 1-800-367-3101 cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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WYOMING’S BIGHORN COUNTRY CLASSIC 2016
BIKE MS WYOMING
NEW LOCATION!
Sheridan is the new hub for the Chapter’s Bike MS: Wyoming, Bighorn Country Classic, which features a two-day, 150-mile course that will take cyclists through scenic communities including Sheridan, Ucross, Buffalo, Story, Banner, Dayton and Ranchester. For those seeking an added challenge, there will also be course options into the majestic Bighorn Mountains. Sheridan residents Joel and Anna Bailey are looking forward to their second Bike MS Wyoming ride. “Riding 100 miles was on my bucket list, so we decided to do Bike MS last year,” said Anna, a financial advisor with First Northern Advisors. Knowing conditioning was important, Anna trained by going to crossfit three days a week, riding her bike to work two times a week and adding a longer ride on weekends. “My father told me that it’s really about endurance. If you can ride 30 – 40 miles, you are fit enough to ride 100. We chose
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to do the Century course the first day, which was hot and I faced big hills, but I made it. The second day I rode another 80 miles and averaged 17.5 miles per hour, which was a personal best. That weekend I accomplished three key personal goals - I rode 100 miles in a day; I rode my best pace ever; and I supported a cause that will help find a cure for people with MS.” MS touched the lives of the Bailey’s eight years ago, when Joel’s youngest brother was diagnosed at the age of 24. “There was no history of MS in our family and the prospect of him facing life in a wheelchair was very scary. He was able to take part in a drug trial, which changed his life. Today he is able to play ice hockey again and coach youth soccer, so we have seen firsthand how therapies funded by research are impacting lives,” Joel said.
“I encourage people to get involved and be part of this fun event. Don’t let the long distance deter you – it’s a ride, not a race. The entire course is well organized and supported with rest stations and SAG vehicles. People can do more than they think and encouragement from other cyclists keeps you going!" “When we learned that Bike MS Wyoming would be held out of our community this year, we were excited. Sheridan is such a benevolent community and has an avid biking culture, which will spark a lot of interest and generate support to make the ride very successful.”
MS CONNECTION: WINTER 2016
EVENTS
WAYS TO GIVE
RIDING FOR DAD BY STEPHANIE AND HEATHER NELSON One of our favorite memories of our dad was when we ran together in our neighborhood’s one-mile Fourth of July race. Our picture made the newspaper: Dana Nelson running with his daughters, Stephanie, 5, and Heather, 7. Our dad wasn’t just active as we were growing up, he was involved. He didn’t just teach us to swim, he refereed our swim meets. He built sets for the high school musicals and chaperoned field trips. When he was diagnosed with multiple sclerosis 18 years ago, we didn’t know what to expect. At first, we noticed only small changes. He walked with a cane. Sometimes he didn’t realize it when his shoe fell off. But he stayed as active and positive as before. Eventually, the changes became more noticeable. As his mobility declined, he transitioned from using the cane to a walker, then to an electric scooter and finally, to a power chair. It’s hard not to take our own abilities for granted. We cook dinner, walk the dog and check our email without thinking twice. When our dad would give almost anything just to hug his grandchildren or hold a cup of coffee, it seemed ungrateful to not use our abilities to the fullest. So we decided to challenge ourselves by signing up for Bike MS: Ride Virginia. We weren’t cyclists. We couldn’t imagine riding 25 miles, much less 150. But for us, it was about doing something in our father’s honor. Other riders were more experienced, but we made up for it with motivation.
THE NELSON FAMILY Two days on our bikes also gave us time to think about how MS has changed our parents’ lives and ours. They may not have been out there pedaling, but they were with us in spirit. We couldn’t have been prouder to see them cheering for us at the finish line. Although it may be too late for a cure for our own dad, we hope there’s a cure in time for other dads with MS to walk their daughters down the aisle and play with their grandchildren. n
To register for a bike event in your communtiy please visit: bikeMScolorado.org | bikeMSwyoming.org
2016 EVENT
VOLUNTEERS NEEDED There are plenty of opportunities to get involved as a volunteer and to be a part of this awesome event that raises over $4 million for the Chapter. Check them out and register today by visiting bikeMScolorado.org, then click on 'Volunteer" for descriptions of volunteer positions! To learn more, contact Sarah Ness at cowyvolunteer@nmss.org or 303-698-5443.
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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EVENTS the disease. While Peggy had many of the same symptoms my first wife experienced, treatments have advanced thanks to the support of so many for research. Most of the time you can’t tell Peggy has MS.
MS INSPIRES
GIVING BACK
Anyone who has encountered MS knows the unpredictable nature of the disease – from its random range of symptoms to the individuals it targets. MS can strike someone with no family history. For others, the trail of MS can be followed throughout an entire family tree. In volunteer Doug Younger’s life, MS has surfaced close to home many times, which is why he supports the Society in many ways. Younger first encountered MS in the early 1990s. He and his wife were busy with their family and work when she started feeling numbness in her feet and tingling in her hands. In 1991 at the age of 30, his wife was diagnosed with MS. “Then there weren’t the drug options that are available today,” said Younger. “Early on it was the ABCs – Avonex, Beraseron and Copaxone.
The medications didn’t work for my wife and there was nothing we could do as she progressed from using a cane to a walker, then to a wheel chair and a feeding tube, finally losing her 11-year battle at 41. “We had two young children and between care giving, working and raising the children, I was going 24/7 most of the time. The Chapter helped me in such a good way - finding nurses, home care providers and even respite care so I could attend my kids’ sports games. This made a huge difference,” he said. After the loss, Younger connected with the Chapter though Bike MS, riding for 14 years as his way to help others. He also started dating again and met his current wife Peggy online. “On our second date she told me she had MS. I also learned that she had a sister with MS and a brother who had passed from complications of
“Peggy and I are Chapter volunteers helping with tasks from administrative support to being Bike MS road marshals. We continue to participate in events; both of us have participated in Walk MS for nearly two decades, and together as Team Avengers with friends and family for the past five or six years. Three years ago MS unexpectedly touched Younger again when following bouts of fatigue, his brother and walk team member was diagnosed. “I really couldn’t believe it” Younger said. Not deterred, Younger remains positive and found another way to give back - using his facilities maintenance skills to modify the homes of Chapter clients– from adding grab bars in a garage to widening a bathroom door for easier access. “I thank God every day that I’m able to help. When case managers call with a request for someone, I do everything I can to make their lives better. The Chapter has helped me for many years and as long as I’m able to help, I will.”
D.I.Y. FUNDRAISING Use your unique intrests and ideas to support the society through a Do It Yourself fundraiser. Have a garage sale or simply ask your friends and family to Join the Movement®.
1. Decide on an event or idea – the sky is the limit! 2. Visit DIYco-wy.org to get started 3. Create your online fundraising page! Set a goal, share your story and include information about your fundraiser 4. Use our online toolkit containing step-by-step instructions and digital downloads 5. Invite friends and family to participate by emailing your personal fundraising page
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303-698-5443 doityourself@nmss.org MS CONNECTION: WINTER 2016
EVENTS
Glenn Remelts has had a lifelong passion for backpacking and hiking, but three years ago he thought the door had closed on these activities due to the health of his wife Nancy, who has lived with MS since 1994. Three years ago the Grand Rapids couple moved into a handicapped accessible home, thinking Nancy’s declining health was leading toward life in a wheelchair. “I felt we had reached the point where I couldn’t leave her alone anymore,” Glenn said. But Nancy had different ideas. “ I didn’t want him to give up doing what he loved so I undertook a workout regimen with a trainer five days a week and recently
NEW THIS YEAR
WALK YOUR OWN WAY! Walk MS helps us team up with loved ones, friends and co-workers to change the world for everyone affected by MS. So what happens if you have a conflict with
started using Ampyra.” The result was almost a ‘miracle’ according to the Remelts.Nancy’s health improved so much that newly retired Glenn decided to fulfill his dream – a 525 mile hike following the Continental Divide Trail in Wyoming. He also hopes to raise $50,000 to end MS along the way. “This trek allows me to combine two things I care about – helping everyone who lives with MS and hiking, and it also celebrates Nancy’s renewed ability to walk ,” Glenn said.
establishing meet-up connections and if someone has an interest in doing part of the trail with me, keep checking our website for details. We hope Nancy will also be able to do a part of the hike, which would add a very happy note to this endeavor,” he added. Glenn will be posting hike planning updates at facebook.com/ms525.org. Like the page to stay updated. For additional information or to make a donation of support, visit MS525.org.n
He plans to start this adventure on the Colorado/Wyoming border near Rawlins on July 30 and will hike or bike 525 miles over 32 days, ending up at the west entrance of Yellowstone National Park. “ I don’t plan to do any phase of the trip alone, as the trail is fairly isolated. Our daughter Sarah Harper plans to start this adventure with me and our son Nick will be joining me near the end, with others connecting along the way. We are still
the Walk MS date in your community? You can get creative and walk your own way. This is what Helen Dickens did when she realized she and her children would be in Cape Town, South Africa on the date of Walk MS Denver last year.
we wore our bright green team T-shirts, coordinated our time zones and Skyped with our Denver team as we walked three miles along the coast in Bantry Bay in Cape Town. It was an amazing experience and allowed us to maintain a special tradition.
A runner and triathlete, Dickens connected with the Chapter after being diagnosed with MS in 2010 at the age of 57. “I’ve always been active in athletic events, but started falling when I got a little tired. My moment of revelation was when I fell on my face, chipping my front teeth,” said Dickens. “I was advised to get checked out and was very surprised to learn I had MS.
“When we checked out of our hotel, our valets asked for our T-shirts and we gladly gave them. When they are worn, people at the tip of another continent will know there is a Boot Kickers team working to end MS,” Dickens added.
“My family and I formed the Boot Kickers Walk MS team as a way to support the Society. Getting together with family and friends every year for Walk MS is important to us and we didn’t want to miss it. My children and I decided we could participate virtually, through Skype, with my husband, sisters and other team members walking in Denver. On event day
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
“This is a great example of how to stay involved even if you can’t physically be present at a Walk MS event,” said Chapter President Carrie Nolan. “You can create your own Walk MS wherever you may be and continue to raise awareness by taking steps to end MS. You can do it wherever you are and still raise critical funds!”
For Walk MS dates in your community, visit cureMSco-wy.org.
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EVENTS
NEW THIS YEAR
GET READY TO RUN! The Chapter will host its first ever 5K option at Walk MS Denver at 8 a.m., Saturday, April 30, 2016, prior to Walk MS Denver. The event will feature a U.S. Track and Field certified 5K course around Ferril Lake at Denver City Park and will be chip-timed. All runners will receive a long-sleeve technical T-shirt, goody bag, refreshments, a pancake breakfast and a finisher’s gift. Many hours have gone into developing this new offering by our Planning Committee volunteers, including Carlyn Shaw and Randy Kruman – both are avid runners, both live with MS and both look forward to the success of this inaugural run option. Shaw was a 19-year-old college student when she was diagnosed with MS after experiencing numbness along the entire left side of her body and losing vision in one eye. “I had no idea what was going on and when I was told I had MS, I freaked out.” Refusing to let MS define her, Shaw became involved with the Society in San Diego and took park in several 50-Mile MS Challenge Walks to exercise and keep using her muscles. “Then I was challenged to do a half marathon and
running became a passion,” she said. Ten half marathons and many friendships later she is still running. An inspiration, Shaw, now 37, ran both the New York and Boston Marathons in 2015, raising $8,500 to benefit MS research along the way! “The 5K option will be fun for friends and family members, and new supporters. If you haven’t run before, don’t be deterred, everyone has to start somewhere and running takes practice like anything else. I have been symptom free for a decade and know that every mile we run in Denver will take us closer to a cure.” After experiencing fatigue, cognitive issues and intermittent paralysis, at age 44 Kruman was diagnosed with MS, which led him to leave an intense corporate career to focus on his health and well-being. He connected with Can DO MS where instead of being told not to exert himself, he was encouraged to start running. Kruman had coached runners in high school and that lifelong interest eventually led to his new career – owner
PR E PAR ATI O N TI PS
Considering running a 5K for the first time? Here are some tips provided by Randy and Carlyn to get you started: • • • • •
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of a business where he coaches runners ranging from novices to sub-elite athletes. After volunteering as a medic for Bike MS for several years, he readily stepped up and volunteered his time to help organize the run and is using his connections with running shops and groups to promote the new run. “This is a great way to expand awareness and garner more support for the Society,” Kruman said.
See your doctor Find a coach Wear the right clothes and shoes Prepare. Everyone has to start somewhere. Believe you can!
R E G I STE R N OW!
Refer a friend or family member with discount code RunMSFriend for a $10 discount. For more information or to register, visit RunMSDenver.org
MS CONNECTION: WINTER 2016
EVENTS
FUNDRAISING
CLUBS WITH BENEFITS
You participate in Walk MS and Bike MS events because you are committed to ending MS forever; but did you know the Chapter has event clubs designed to recognize and reward our top fundraising supporters? There isn’t a better time than now to set a goal to be part of a club or to reach the next club level ~ then enjoy the special perks for your efforts!
THANK YOU TO OUR LOCAL SPONSORS
Top 100 Club
Top 100 Club - Bike MS Colorado
Be among the top fundraisers from our 13 Walk MS events held throughout Colorado and Wyoming to become a member of the Top 100 Club and receive:
This prestigious club is open to the top one percent of elite fundraisers for Bike MS Colorado. Benefits include:
• • •
•
Free Top 100 Club hoodie Special bib on Walk Day Access to VIP tent with upscale refreshments and commemorative item on Walk Day Invitation to Closer to a Cure VIP reception and celebration dinner
Peak Feat Raise $500 or more and step into the Peak Feet Club to receive: •
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Access to VIP tent with upscale refreshments and commemorative item on Walk Day Peak Feet Club shirt
• • • • • • • • •
Free Top 100 Club jersey Special event weekend bib Invitation for two to the annual High Roller Training ride Access to VIP areas with upscale refreshments Access to VIP port-o-potties along the course Free registration the following year Invitation to Closer to a Cure VIP reception and celebration dinner VIP luggage handling Eligible for Early Packet Pick-up
High Roller Club – Bike MS Colorado & Bike MS Wyoming Raise $2,000 or more to become a High Roller and enjoy:
• • • • • • •
Free High Roller Club jersey Special event weekend bib Invitation to the annual High Roller Training ride VIP tent with upscale refreshments (Wyoming only) Access to VIP port-o-potties along the course (Colorado only) Free registration the following year Invitation to Closer to a Cure celebration dinner
Premium Pedaler Club – Bike MS Colorado & Bike MS Wyoming This club is open to riders who raise $1,000 - $1,999.
• • •
New this year! Free Pedaler Club jersey Special event weekend bib Discounted registration the following year
Top 10 Club – Bike MS Wyoming The top 10 fundraisers for Bike MS Wyoming comprise this club and receive: •
Commemorative Top 10 Club jersey
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Special event weekend bib
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Invitation for two to the annual High Roller Training ride
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Access to VIP tent with upscale refreshments
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Free registration the following year
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Invitation to Closer to a Cure VIP
Top Bike MS fundraisers also qualify for an Official Bike Store voucher that can be redeemed for items such as new cleats, helmets, gloves and energy/nutritional supplements or can choose a prize from the online prize redemption center!
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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ADVOCACY
¡CONECTAR!
MS AWARENESS WEEK MARCH 7-13, 2016
Cafe Con Leche We invite Hispanics/Latinos with MS to participate from the comfort of their home or office phone. The monthly calls are free.
MS AWARENESS WEEK & UPCOMING PROGAMS
MS Awareness Week is a time to connect and place the spotlight on MS. The following are just a few of the fun and informative activities planned during awareness week and throughout the month:
Grab your coffee cup, sit back, and listen to the experiences of other people with MS.
Denver Metro
Northern CO
Cooking Class and Grocery Store Tour
Events Kickoff and Brewery Tour Ft. Collins Brewery | March 3 Left Hand Brewing | March 10
Take this opportunity to talk about your concerns and meet others who understand your situation. Topics will focus on areas of interest to people living with MS. Additionally, experts from different areas of specialization in MS will join us to speak about important topics in MS care.l
March 8
Relationship Matters March 9
Take Charge
Yoga and Meditation
April 8 -10
Walking Poles
Western Slope
March 12 March 13
Run MS Club Kick-off March 13
Emotional Wellness March 10
Everyday Matters March 12
Southern CO
Maximizing your Doctor Visit
Intro to Accupuncture
April 14
March 8
Walk MS Family BBQ
Intro to Chiropractic Care
For More Information or Registration Call
April 16
1-800-344-4867
March 9
Intro to Chiropractic Care
Wyoming
Introduction to Essential Oils
Everyday Matters Casper, March 4- 5 Cheyenne, March 25-26
March 15 March 17
For more information, check out our online calendar:
DAY AT THE CAPITOL
Chronic Disease Awareness Day
Remember to join the National MS Society and our partners at the Chronic Care Collaborative on Wednesday, February 24 to advocate for people living with MS and other chronic conditions by talking with legislators. Volunteers, family and friends are welcome. Please wear orange to signify your connection to MS. Listen to 9news reporter TaRhonda Thomas as she moderates a panel of guest speakers and make a difference in your community!
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Option 3
2016 Schedule:
cureMSco-wy.org
Calls take place from 2-3:30pm EST • February 9 • March 8 • April 12 • May 10 • June 14 • July 12
Parking is available at any available metered space and a select number of ADA spaces on the State Capitol grounds.
Location:
Old Supreme Court Chamber 200 E. Colfax Ave Denver, CO
Agenda:
7:45 AM - Breakfast & Mingling 8:00 AM - Program For more information please contact: Colleen.Becker@nmss.org 303-698-5409
MS CONNECTION: WINTER 2016
LIVING WITH MS
LIVING WITH MS
A SCHOLAR GIVES BACK By LEAH WILSON My name is Leah Wilson and I’m a senior in nursing school at Kent State University in Ohio. I am also a National MS Society scholar. Having been awarded the scholarship for my first year of college and every year since then, I want to thank the MS community for helping the Society’s scholarship program continue! My life has been touched by MS since I was six years old when my mother was diagnosed in 2000. She was a single mom and I was her only child, so we were best friends from day one. Her diagnosis changed both of our lives forever. Over time, I saw the physical limitations of the disease impact her daily life. She had been adopted as a child, and had chosen to work as a social worker to help foster children and “give back.” But halfway through getting her master’s degree, she had to stop working. She moved to a nursing home my sophomore year of high school and never came back home. After constant decline and five years in the nursing home, my mother passed away last March at the age of 47. Though her journey with MS was not my own, it affected my life in every way. And it continues to.
SOCIETY SCHOLAR LEAH WILSON My mom always taught me to aim high — I didn’t even know college was optional until I was a teenager. She raised a young woman who knows how to be passionate, set goals and achieve them. My biggest passion is nursing: I love working with pregnant women, especially teenage moms. I graduate with a Bachelor of Science degree in nursing next May and I can’t wait to see what the future holds! After graduation, I plan to work on a labor and delivery floor in a hospital, then go on to become a nurse practitioner — either a women’s health nurse practitioner or a certified nurse-midwife. When I graduate, I will have received a Society scholarship for every semester of my bachelor’s degree. That is so special to me and I know my mom would be so proud. It has made a huge difference in my life and the lives of many others. n
Visit www.nationalMSsociety.org/scholarship to learn more about the National MS Society scholarships program.
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
• Disability guidance • Health insurance evaluation • Physician referral • And more!
All of the answers you need with just one call: cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
1-800-FIGHT-MS (344-4867) 13
RESOURCES of MS, but didn’t know anything about it or anyone who had it. My next thought was what could I do to get better?”
JUDY MAKI
POWER LIFT DRIVES INDEPENDENCE Judy Maki remembers the day that she knew something wasn’t right. On a routine outing to the grocery store in 1995, the active 55-year-old noticed something odd. “I couldn’t figure out why I kept tripping. The next my balance was and Brent andday his daughter, Danica at off Walk MSI knew that wasn’t normal, so I called my Pueblo 2014. doctor for a checkup. I had an MRI and when the diagnosis was MS, I was totally caught off guard. My first thought was ‘where did that come from?’ I had heard
LIFE CHANGING
STAIR GLIDE After living with MS for 24 years, Gary Stanley had reached the point where he was no longer able to freely move around his multi-level home and needed a stair glide to be able to get from one floor to another on his own. Stanley contacted the Chapter for help to make his home more accessible and making that call proved to be life changing. Care management connected him with a Chapter partner, the Home Builders Foundation (HBF), an organization dedicated to changing lives by providing home modifications to help people with disabilities and financial need remain in their own home with dignity and independence. Thanks to support from
WANT TO MAKE A DIFFERNECE?
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Judy started taking MS therapies available, but eventually had to stop several years ago due to her immune system’s response to the medications. As the disease advanced to the secondaryprogressive stage it took its toll, impacting her mobility, as well as her sense of independence and her confidence, leaving this outgoing septuagenarian feeling isolated, dependent and trapped inside her body and her home. She decided to contact the Chapter to see if there were resources available to help her obtain a power lift for her vehicle. Through the Independent Spirit Fund, the Chapter was able to provide the financial assistance needed for her vehicle modification. Although the grandmother of 15 relies the Chapter’s Independent Spirit Fund, the HBF, Denver Metro Fair Housing Center and the Pinehurst Sanger Foundation, the HBF and Accessible Systems were able to provide and install the $12,500 custom stair glide at no cost to Stanley. Stanley said the stair glide has given him a new level of independence. “I used to be trapped on one level until someone could help me. This is so helpful. I can go up the steps whenever I want to, instead of just once or twice a day without wait(ing) for someone [to] help me all of the time. I truly appreciate it. It’s the greatest Christmas gift I could ever ask for.” Stanley’s wife Lorraine agreed. “[The lift] was installed and it is the greatest addition to our household. My husband loves it and it makes life a little easier for him.” “We have so many ways to help people,” said LeeAnn Bellum, Chapter care management director. “There is power
on a walker or scooter and leg brace to get around at home, she is now able to attend her grandsons’ baseball games and drive to her doctor and dentist appointments, and social functions on her own thanks to the vehicle power lift. “I always appreciated the help I received from friends and family, but it does impact self esteem when you aren’t able to do things yourself. I’m a fighter and have a lot of spunk, but MS really took the wind out of my sails. I am so grateful to the Chapter, because now I can do things for myself again and it’s opened a whole new world.”
in partnerships and people are just a call away from a vast network of support. We encourage people to contact us, as we are here to help. No one has to face the challenges of MS alone.”
Beth Forbes, executive director of HBF, agrees. “The HBF is grateful for the longstanding partnership with the National MS Society. They refer clients to us and HBF helps modify the homes. Together, we are changing lives,” she emphasized.
You can be part of helping people like Stanley remain as independent as possible by making a gift of support to the Independent Spirit Fund. To learn more about this special giving opportunity, contact Sophia Conti at 303-698-5434.
MS CONNECTION: WINTER 2016
Take the heat off your budget this summer!
Friends of the Colorado Medical Exemption Program:
Xcel Energy offers a discounted summer electric rate, through the Colorado Medical Exemption Program (CMEP), to qualified, customer households with medical needs. We can help you manage your energy budget during the hottest time of the year. Find out how, together, we can help you stay cool and comfy all summer.
Lupus Colorado Epilipsy Foundation ® Colorado Adult Resources for Care and Help Denver Regional Council of Governments Colorado Cross-Disability Coalition
CMEP is an energy assistance program available in communities where Xcel Energy electric service is available, and is overseen by the Colorado Chapter of the National Multiple Sclerosis Society.
Call the Colorado Medical Exemption Program office at 1-303-698-5409 to find out more. Hurry! The deadline for application submission is May 1.
© 2016 Xcel Energy Inc. | 16-01-202
NMSS EVENT DATES
SAVE THESE DATES WALK MS
COLORADO
BIKE MS
Bike MS Colorado
WYOMING
Denver
April 30
Laramie
April 16
Grand Junction
April 30
Cheyenne
April 30
Pueblo
May 7
Southwest Wyoming
May 7
Northern Colorado
May 14
Casper
May 21
Glenwood Springs
May 14
Northwest Wyoming
June 4
Colorado Springs
May 21
Gillette
Boulder County May 21 walkMSco-wy.org
the
Independent Spirit Fund Independence for People living with MS
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
bikeMScolorado.org June 25 – 26
Bike MS Wyoming
bikeMSwyoming.org August 13 – 14
Sept. 10 muckfestMS.com Parker, CO | July 16
hikeMScolorado.org Keystone Resort | July 30
To support the Independent Spirit Fund, donate online at www.nationalMSsociety.org/ISF or for more information contact Sophia Conti at 303-698-5434.
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900 S. Broadway, Ste. 250 Denver, CO 80209
GET CONNECTED
cureMSco-wy.org
1-800-FIGHT-MS (344-4867) Sign up to receive Society e-mails at nationalMSsociety.org/signup
MS CONNECTION
Learn. Share. Connect.
The Society created MSconnection.org, a social networking website and online community for people living with MS, their loved ones and experts to connect in a safe and secure environment. No one should have to face MS alone. Join thousands of people supporting one another and exploring the issues that shape your world.
Sign up & start connecting!
MSconnection.org