SPRING 2016
National Multiple Sclerosis Society
MS CONNECTION NEWSLETTER
COLORADO-WYOMING CHAPTER
Colorado-Wyoming Chapter
INSIDE THIS ISSUE:
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NEW WYOMING BOARD TRUSTEE
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2016 MS CHAMPION
NATIONAL MS SOCIETY'S 2015 U.S. REPRESENTATIVE OF THE YEAR
ON THE HORIZON
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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LETTER FROM
THE PRESIDENT Dear Friends: Spring is in the air and we find ourselves rapidly approaching the start of our 2016 series of signature fundraising events. This is a season filled with opportunities to place the spotlight on MS and strengthen support through our 13 walks, two rides, hike and our obstacle challenge events MuckFest MS. It is also a time to further expand connections and we are pleased to share some of these efforts. In conjunction with Walk MS Denver, for the first time we are offering a chip timed 5K run option as a way to give runners in the Metro Denver area an opportunity to come out, engage with us and run to end MS. This will immediately precede the walk and we have received strong interest from the running community. We have also changed locations of our Wyoming ride and our MuckFest MS this year. Bike MS Wyoming will be held out of Sheridan, Wyoming, providing a scenic new course for riders and MuckFest MS will take place in Parker, Colorado. Both locations are closer to larger communities, which will enhance convenience, grow participation and foster new relationships with area chambers of commerce and local business communities. During MS Awareness Week this year the Society launched a new way to virtually connect at WeAreStrongerThanMS.org. At this site people share experiences and solutions they’ve uncovered to live their best possible lives. It is a great way to learn from each other and I encourage you to visit the website. Funds raised from these events are critical, as they allow us to provide services and resources that empower people and enable us to support the Society’s significant investment in research. It is an extraordinary time in the research arena – today, there are more MS
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clinical trials underway than at any time in history, there has been an acceleration in approved MS treatments, more than 200 genetic variants have been identified, and a concerted effort has been made to address progressive MS through the Society’s launch of the International Progressive MS Alliance. We are optimistic that these research efforts will begin to yield treatment options for progressive MS in the near future, giving hope to everyone living with MS. These research advancements would not be possible without the ongoing and concerted efforts of our supporters. As I mentioned in our winter newsletter, this
is also a time to reach out to friends, family members and colleagues to give them the opportunity to connect with us and support our mission. In the fast paced times we live in, a letter, email, and/or facebook request is often appreciated. Many will respond to the chance to lend their support and every dollar raised leads to more solutions for everyone affected by MS. If you have ideas or questions about the Chapter, our events or other activities, please contact me, our staff or your Chapter trustees. Your thoughts and suggestions are always welcome. Please remember that together we are stronger and your efforts are fueling the progress that is changing the impact of MS forever.
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 D. Leeds Pickering 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: SPRING 2016
IN THE NEWS
D. LEEDS PICKERING
Wyoming he worked for the Community Unit School District #5 in Sterling, Illinois.
NEW BOARD TRUSTEE D. Leeds Pickering retired as the director of the Health, Safety and Nutrition Division of the Wyoming Department of Education in 2010. The Cheyenne resident held various positions with the Wyoming Department of Education throughout his 30-year career, including pupil transportation program manager, capital construction manager and school safety program manager. Prior to moving to
TIME TO CHECK OUT THE
COLORADO MEDICAL EXEMPTION PROGRAM
During the summer Colorado residents living with MS may be able to 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.
Pickering earned a Bachelor of Science in Education from the University of Dubuque in Iowa and a Master of Science in Education from Central Missouri State University. A strong proponent of volunteering, Pickering served on the Wyoming Operation Lifesaver board of directors for 25 years, including a term as board chair, and currently serves on the Friday Food Bag Foundation board of directors. He has also participated in Walk MS for the past seven years.n
D. LEEDS PICKERING
To participate, Xcel Energy customers must meet all of the following four qualifiers: •
Have medical conditions that require high electric use during the summer and/or use life support equipment in their homes.
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Use a high level of electricity (more than 830KWH of power) each summer month.
•
Have a household income of less than 250 percent of federal poverty guidelines.
Complete and return the program application by May 1, 2016. Note that part of the application must be completed and signed by your health care provider. The application is available on the Chapter and Xcel Energy websites. This program can make a significant impact on your energy bill and more than 600 households in Colorado benefitted from this program in 2015. Don’t delay! n
Send your completed application by May 1, 2016 to Colleen Becker 303-698-7421 colleen.becker@nmss.org or mail to: Colorado Medical Exemption Program 900 S. Broadway, Suite 250
WE HAVEN"T CURED MS YET. BUT FOR TWO MINUTES, IT FEELS LIKE WE DID. National Multiple Sclerosis Society Colorado-Wyoming Chapter
SEE STEVE'S STORY AND SHARE YOUR OWN AT WeAreStrongerThanMS.org
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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LIVING WITH MS A SON'S TRIBUTE
MOONSONG As anyone touched by MS knows, this disease affects not only the person diagnosed, but also family members and others, changing routines, relationships and abilities to continue careers and lifelong interests. “MoonSong,” a play written by Sean Patrick Higgins, shares his family’s intimate experience with MS. Recently performed at the Gryphon Theatre in Laramie, Wyoming, “MoonSong” is based on his mother Sharon WagnerHiggins, who was officially diagnosed with MS in 1991. The play explores the impact of MS through the main character, Mom, a strong woman battling MS who seeks control in a world spiraling out of hand, as her son unknowingly constricts avenues of possibility. Wagner-Higgins was a singer/song writer into the early 1990s. She recalled being a
MONEY MATTERS
AUTHORIZING CARE For many people with multiple sclerosis, the need to obtain “prior authorization” might seem like yet another hoop to jump through before they can access medications or imaging tests such as MRIs that have been prescribed or recommended by their healthcare providers.
WHAT IT IS Prior authorization, also called preauthorization or pre-approval, requires that a prescription or procedure be approved by a person’s health insurance plan before it can be provided. In this process, the insurance company determines member eligibility, benefit coverage, medical necessity, location and appropriateness of services. Under current law, requiring prior authorization is entirely within insurers’ legal rights.
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SEAN PATRICK HIGGINS
PHOTO CREDIT: JORDAN MATTER teenager when MS symptoms first started surfacing, but it wasn’t until her third child was born and she lost sight in her right eye that she was diagnosed with MS. Through the years the single mother of four struggled as she saw her physicality and her ability to play the guitar diminish. She also carried the knowledge that her own mother had passed from MS at the age of 35. The play is a son’s loving tribute to his mother, now 59, whose mobility is aided by either a walker or a wheel chair. It is also a son’s way of sharing insights about MS and its impact in a unique way.
Wyoming and currently a student at the Yale School of Drama, wrote “MoonSong” following the death of his stepfather in 2014. “I had this play in my mind, and that loss was my catalyst to get going,” Higgins said. “The title ‘MoonSong’ is based on a children’s lullaby that my siblings and I sang with my mom as kids. I wrote this play because I want to debunk the mystery about MS and have people come away with a better awareness about this disease through a shared visceral theatre experience. “Originally I had planned to be an MS researcher, but found my gifts were more aligned with acting, writing and directing. This has been an alternative way to raise awareness and energize support to end this disease forever,” Higgins added. “MoonSong” premiered at Yale’s studentrun Cabaret Theater in 2015. Following its run in Laramie, it may be performed for medical students at Yale School of Medicine in the fall, elevating awareness about MS with another critical audience. n
Higgins, a graduate of the University of
WHEN IT’S A BARRIER While prior authorization is legal, it is not standardized between insurance companies. Each insurance company requires a different form to be utilized for each prior authorization request, which can feel like extra red tape to navigate. And many symptom management medications now also require prior authorization. An insurance company may require a prior authorization every six months, which can increase the burden on your healthcare provider — and make accessing prescriptions take longer. If a prescription happens to be denied by a health insurance company, your physician may complete an appeal. (Clinicians who want to appeal a health insurance decision may search for “Health Insurance Appeal Letters” at nationalMSsociety.org). However, appeals may take two weeks to four months, without guarantee of success
WHAT TO DO At top of mind is whether prior authorization requirements for MS diseasemodifying or symptom management medications and imaging services remain reasonable and easily accessed. To that end, MS activists are working to support legislation that would ensure that all private insurers’ prior authorization forms are standardized and that there is a reasonable timeline for responding to prior authorization requirements for routine care. n If you are facing challenges with your health insurance and accessing the care you want, an MS Navigator can help. Call 1-800-344-4867 to speak with an MS Navigator in person or visit MSconnection. org to ask questions via the “Ask an MS Navigator” discussion board.
MS CONNECTION: SPRING 2016
RESOURCES
YOUR MS SOCIAL NETWORK
THE SOCIAL
If meeting up for a Happy Hour, baseball game, bowling or a brew tour with friends who share a common bond sounds interesting, check out TheSocial. True to its name, the Chapter hosts TheSocial gatherings as a way for young adults who’s lives are affected by MS to get together, have fun, network and also share personal experiences with others in comfortable, social settings. “TheSocial’s mission is simple, to connect people who’s lives are affected by MS,” said Jack, who attends TheSocial events. Learning about MS from medical and other professionals is important essential, Brent and his daughter, Danicaand at Walk MS but Jack knows how beneficial it is to also Pueblo 2014. have friends to talk with who can give perspectives about MS based on their personal experiences. In March 2009, just days after celebrating his 33rd birthday and seeing an ultrasound of his first child, he was planning to hit the slopes for a day of skiing with his family. Plans changed quickly when he woke up and realized he had lost vision in the his left eye. Instead of a fun day in Colorado high country, Jack spent the day in an
LIFE INSURANCE POLICIES
REVIEW THEM REGULARLY
Are you paying premiums on a life insurance policy? Has it been years since you looked at the policy provisions? If so, you are not alone. Many of us purchase a life insurance policy, put it away and never look at it again. Life insurance can be used to pay for funeral expenses, college education for children, debt repayment , and income replacement. Life insurance proceeds are
living a pretty normal, active, full life. That day in 2009 I wasn’t able to ski, so now I ski each year on the anniversary of my diagnosis because I can,” he emphasized. “People need to get the old thought process out of their heads and one way to do that is by building a network of trusted friends so when you need to talk or help working though something, you have the connections there for you. TheSocial is a great place to do that.” emergency room, where after multiple tests and a round of IV steroids he was told he probably had MS. After subsequent tests, his diagnosis was confirmed. “Needless to say, I was surprised. My mother was diagnosed in 1994 and she never returned to working full time and quickly began using a cane, so I expected the worst and was full of fear. Luckily, I knew someone who had been diagnosed five years earlier who was able to help and walk me through the process. TheSocial gives me the opportunity to do the same for others and I’ve developed great friends though this group. “MS is a different disease than it once was,” Jack continued. “The old thought process of not working and ending up in a wheelchair has been replaced with
generally not taxed to the beneficiary. Do you know if your policy is adequate? Life insurance can be confusing because there are many different types of policies available. If you own a permanent life insurance policy, one that has cash value, the policy will most likely be in place until your death. It is a good idea to review this type of policy occasionally because there may be policy provisions you are not aware of that could enhance your policy.
Currently, The Social activities are hosted in Denver, Fort Collins and Cheyenne, Wyoming. For information on upcoming events in Denver, visit us on Meetup.com at: meetup.com/The-Social-Denver/. For information about upcoming events in Fort Collins and Cheyenne click on the calendar at cureMSco-wy.org. n
THE SOCIAL CASPER The Chapter is in the process of starting TheSocial in Casper. If you are interested, call Molly Palmer at 307-433-9590 or visit the website and click under “Groups and Discussions’ for updates and details.
health-related questions. Conversion may become important to you, if you decide after all, that you would like to have life insurance for your family upon your death. If you have questions about your policy, the Society has a volunteer available who will meet with you, review your policy and answer any questions you might have. To schedule an appointment, please contact chapter care management director LeeAnn Bellum at 303-698-5407. n
If you have a term life insurance policy, one that has no cash value, it may terminate before your death. Often a term policy can be converted to a permanent policy without having to answer any
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RESOURCES to styling hair full time, has secured a part-time position helping others facing homelessness. She also makes time to give back by donating her professional stylist skills once a week to a nonprofit that helps women achieve economic independence.
CHAPTER SUPPORT
MAINTAIN INDEPENDECE Recently, hair stylist Tammy Ulibarri reached out to the Chapter for help following a difficult MS exacerbation, which combined with other serious health issues, prevented her from being able to work full time. In the midst of dealing with her health issues, her landlord asked her to move out and Tammy faced the very real challenge of making ends meet. She found a new apartment on her own and was doing all she could to try to find extra work cutting hair so she could afford the required security deposit and first month’s rent, and also pursued additional employment options.
the
TAMMY ULIBARRI Through the Independent Spirit Fund the Chapter was able to help with financial assistance by paying the security deposit for the apartment and providing food gift cards to help supplement her special diet needs. The staff also donated some furniture and other essentials so that she was comfortable in her new home. During all she faced, Tammy never gave up. She maintained an incredible positive attitude and approached every obstacle with the strong determination to maintain her independence. She is now settled in her apartment, and in addition
Independent Spirit Fund Independence for People living with MS
“Without the support of LeeAnn Bellum and the Society I would not have been able to maintain my independence, which is extremely important to me,” said Tammy. “Although I have MS and other health issues I don’t want to go on disability,
My work and helping others keeps me going... because I really don’t believe I’m disabled. and keeps my mindset positive. I cannot thank the Society enough for helping me through a very daunting and difficult time.”
To support the Independent Spirit Fund, donate online at www.nationalMSsociety.org/ISF or for more information contact Sophia Conti at 303-698-5434.
Saturday, July 30 Keystone Resort
LOCALLY POWERED BY
LOCALLY PRESENTED BY
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!
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MS CONNECTION: SPRING 2016
EVENTS
MEET 2016 BIKE MS CHAMPION
KERA MILLER
CYCLING INSPIRATIONS
BIKE MS CHAMPIONS
I get emotional about Bike MS because to me, it’s not just a bike ride. I often find myself at a loss for words to describe the motivated and committed people who ride and raise an incredible amount of money that helps everyone affected by MS. MS surfaced in my life when I was 27-yearsold and in the final months of graduate
They are some of the most amazing people I’ve ever met. school completing my master’s degree in Counseling Psychology. I was also working full time and thought my running migraine headaches and vision issues stemmed from stress. A friend convinced me to go to the ER and after three days of testing l learned it was MS - not stress - causing my symptoms. My mom had a friend with MS, which was my only exposure to MS at that time. I immediately did a lot of learning and eventually spent four years working for the Chapter as a Care Manager. The staff works tirelessly, doing remarkable things for people with MS and their families,
COLORADO 2016 LOCALLY POWERED BY
LOCALLY PRESENTED BY
KERA MILLER sourcing the unprecedented amount of resources and services they are able to provide because of the funds raised at events such as Bike MS. After a decade of taking an injectable MS modifying drug therapy, and thanks to funds supporting research, I’m now able to take an oral therapy – wonderful is an understatement for how I feel not having to do an injection every day. That is why our friends and family team, Team Stay Phat, is mission first focused on fundraising. My sister started our team after I was diagnosed and we’ve ridden every year since. Bike MS is my favorite time of year and I’m honored to be an inspiration. n To learn more about Kera Miller and other 2016 Bike MS Champions, visit cureMSco-wyo.org.
Bike MS Champions are a special group of people who share their personal stories and Bike MS experiences to motivate others to come out, hit the pavement and ride the distance to help end MS forever. They will be featured on banners and signage along the 150-mile, two-day course, their smiling faces providing visual reminders of the people being helped by every mile pedaled. To register for a bike event in your communtiy please visit: bikeMScolorado.org bikeMSwyoming.org
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 10 Bike MS Champions visit: bikeMScolorado.org
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EVENTS UBER FANCY TO GET
UBER MUDDY
People often say that silver linings derived from having MS are the special friendships that would not have been made, had it not been for the disease. These connections can start at a social event, luncheon, support group or through chance meetings, such as filming a Gilenya commercial, which led to the formation of MuckFest MS team Uber Fancy. In 2014, Deana Taylor of Sheridan, Arkansas, was among people using Gilenya who were selected to film a commercial in California about the product, and share their personal stories as ambassadors. “I was diagnosed in 1999 when I was 29-years-old,” said Taylor. “ The right side of my head began itching and I
WAYS TO GIVE
SOMEONE TO LEAN ON Erin Schatteman is a self-proclaimed “non-runner,” even though she recently completed the Disney Princess Half Marathon. Diagnosed with multiple sclerosis in 2006, the St. Louis, Missouri, resident at first experienced only minimal symptoms. However, about a year ago, Schatteman relapsed. “The tingling started in my feet and continued to move up my body. I couldn’t carry my kids and struggled even just to walk.” However, she remembers, “I was showered with support by a group of friends who share a common interest, which is our love of Disney.” That support,
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TEAM UBER FANCY AT THE FINISH LINE couldn’t find anything causing it. It wasn’t until the right side of my face went numb and the sensations extended to my right shoulder, that I went to see a neurosurgeon friend of mine. When he told me I either had lupus or MS, I was completely shocked. Neither was on my radar. When my MS diagnosis was confirmed I started a therapy and then switched to Gilenya. It was nice to have the option to take a pill instead of a shot, and the change of therapy ultimately led me to take part in their commercial. “Gilenya flew people to California from all over the nation to film the commercial. During the week of taping, we had a coach who trained us on things ranging from FDA guidelines to how to express our stories in
and shared passion, led to her decision to run the half marathon. However, the road to Orlando would not be easy. “The first run I went on, I only ran a mile and it took me 20 minutes,” says Schatteman. “[But] I knew however hard the road, I had to do it.” She used the National MS Society’s Finish MS fundraising program to raise awareness and support. “Finish MS made me stick to my goal,” she says. “I had people invested in my participation — it was really motivating. They believed in me [and] I had to show them I could do it.”
under 10 minutes. Ten of us started going out to lunch and dinner together and one night during an Uber ride we started singing “Fancy” by Iggy Azela, which would turn out to be the name of our future team. By the end of the week we had formed a strong bond and despite being geographically located in all parts of the country, we wanted to stay in touch and do things together. “We established a private group on Facebook and decided to form a MuckFest MS team “Uber Fancy” and participate in a challenge each year. In 2015, six of us met in Detroit to compete in MuckFest MS. We had such a great time that we decided on Colorado’s MuckFest MS for 2016. Our team looks forward to getting together, slipping and sliding in Colorado mud and to making new friends. It will be a fun and inspiring time!” n
To register for MuckFest MS Denver visit: muckfestMS.org
lot of people look at me and think it would be easy for me to do this when ‘easy’ is farthest from the case. MS can be an ‘invisible disease’ and people can forget you have it.” Her advice for others with MS who want to run a marathon or a similar endurance event is to “lean on others.” She adds, “Don’t be afraid to ask for help. The Finish MS platform allows you to easily connect with others to create a team, fundraise and update supporters. It’s free, simple to use, and helps you set and achieve a goal. n
And do it she did, although she admits it was harder than she expected. Schatteman uses disease-modifying therapy and manages the worst of her symptoms through physical therapy, but she still experiences challenges. “I think a
MS CONNECTION: SPRING 2016
EVENTS ANUSKA ULLAL
EVENTS
WALKS TO GIVE BACK
This spring marks the eighth year that Team Tortuga steps out at Walk MS Denver. Donning turtle shells, the team is easy to spot and is led by its inspiring captain Anuska Ullal, whose personal MS journey led to formation of this top fundraising team. In 2007, Anuska was pursuing her dream career at the Children’s Hospital of Oakland Research Institute where as a research associate she spent much of her time working to improve the anthrax vaccine. That December she developed a strange pain in her left thumb, which initially was more of a nuisance than anything. When the pain turned to numbness, a visit to her primary care physician revealed something else wasn’t quite right when her reflexes were slower than they should have been. She was referred to a neurologist and at 27-years-old in January 2008, her world suddenly changed when she was diagnosed with MS. “I was in a lab most of the time, which meant I was around anthrax, e coli, radioactive iodine and other hazardous
was also recently appointed by Gov. Hickenlooper to serve on the Colorado Developmental Disabilities Council. At the same time, her personal MS story continues to evolve.
TEAM CAPTAIN ANUSKA ULLAL (L) materials. After my diagnosis I was told that I had to leave lab work due to the risk to my immune system. Initially I thought not working was my biggest problem, but looking back I was in denial [the] first seven months. After my husband and I moved back home to Denver to be near our family for support, I connected with the Chapter because I needed people to talk with about the impact of MS other than the medical part. “I registered for Walk MS, which became my inspiration to form a team,” she said. “I also knew I needed to be involved in something and this connection led to my interest in doing charity work.” Today Anuska is the mother of an active 3-½ year old daughter and is very involved in charity advocacy work, which includes volunteering on the Walk MS planning committee and serving as interim chair of the Autism Society of Colorado. She
Although she has tried many of the medications available, her symptoms have expanded over the past 6 -7 months to tingling in her legs and right hand, which may indicate secondary progressive MS. Now at times has trouble holding items or doing simple tasks such as helping her daughter get ready in the morning, but she continues to be positive. “I started Team Tortuga in 2009 and selected the name because I love sea turtles. The awareness Walk MS raises is amazing and it helps to fund the medications that are invaluable to me. It’s humbling and special to see my 50-plus Walk MS team members walking with my name on their back. The Society has done wonderful things for me and participating in Walk MS is one of the ways I can give back and help to find a cure.” n
To register for a walk event in your communtiy please visit: walkMSco-wy.org
LIVE MUSIC AT WALK MS! David Osmond, music artist, singer, songwriter, and person living with relapsing MS, will be joining us at Walk MS Denver for a live performance on April 30! David is a dedicated advocate for the MS community, will provide keynote remarks and perform his song “I Can Do This,” his personal testament to overcoming the challenges of living with relapsing MS.
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EVENTS was still dark in order to pick up other family members or co-workers who were helping, walking (or both) and arrive in time to set-up the team area. By the time she returned home, usually late morning or early afternoon, she was exhausted,” Geoffrey continued.
REMEBERING A SPECIAL, COMPASSIONATE FRIEND:
WENDY FISHER The Chapter lost a long time, wonderful supporter and friend in January when Wendy Fisher, captain of the Home Buyers Warranty (HBW) Walk MS team passed. Wendy was involved with Walk MS for more than 25 years. According to her lifelong friend Leslie Presas, she initially became involved with Walk MS when a patron of the Chapter and then majority owner of 2- 10 Home Buyers Warranty® (HBW), Ralph Holden, suggested the company organize a team for the event. Always ready to go the extra mile – literally Wendy stepped up and arranged the company’s first walk team. “That year the walk was held at Cherry Creek Reservoir and it was a long one - I believe it was six or nine miles, and it was frigid cold. We had to walk to a place on the east side of the reservoir where we had a spaghetti meal and afterward, there was nothing else we could do but walk back the same six or nine miles, but the event was very impressive,” said Leslie. “Moving forward it just happened every year, and people like Charles Nail contributed quite a bit for each walker, so it was a great thing. Wendy also encouraged the people in the
WENDY FISHER Texas and Georgia HBW regional offices to organize their own teams and she led successful team fundraising for the MS Walk ever since. She was a very strong and integral part of the HBW participation in the MS Walk. Wendy also met Geoffrey, her husband of 19 years, though HBW and he also shared Walk MS memories. “I remember the time of year when things were beginning to “ramp-up” for the upcoming MS Walk
Wendy was constantly in motion; energized, committed and focused on her mission - she was a warrior! “On the day of the Walk, she would rise at 3 a.m. in order to prepare herself for the task ahead and would leave when it
“When Wendy and I got married, she had already been heavily involved in the MS Walk for a number of years. None of Wendy’s children, siblings, parents or relatives had MS but I never questioned her as to why she did it … I already knew the answer. Wendy did it because of what was so abundant in her heart … love.” Twenty years after that first walk, and 692-members strong, HBW became the Chapter’s first corporate Walk MS team to surpass $1 million in cumulative fundraising. Although Wendy has left us, she will not be forgotten. We are forever grateful for her commitment and giving sprit. She will be remembered as someone who truly made a significant difference. n
HOME BUYERS WARRANTY WALK MS TEAM
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:
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• Disability guidance • Health insurance evaluation • Physician referral • And more!
1-800-FIGHT-MS (344-4867) MS CONNECTION: SPRING 2016
VOLUNTEERS
JOY THROUGH
SERVICE
Three days a week, people visiting the Society’s Grand Junction office will find volunteer Faye Smith busy at work. No task is too big or too small for this volunteer who logged in 388 hours of service in 2015 alone! Always positive and upbeat, Faye hasn’t let the MS she has lived with for 36 years stop her from contributing and doing things to help others. A nurturing person, she was a certified nurse assistant until 2005 when she experienced a major MS ‘attack’ and had to quit the job she loved. Faye had supported the Society since the 1980s, but with newfound time, she stepped up her service to the Chapter where she organized and inventoried brochures and other materials, computerized the office’s library and helps with mailings and other administrative tasks. She also heads a monthly social breakfast group, participates on the planning committee for the local MS Walk and helps coordinate the medical clinic offered quarterly in Grand Junction – for starters! Additionally, she finds time to routinely visit people living with MS and others in nursing home facilities, brightening their day.
VOLUNTEER FAYE SMITH Her commitment and efforts led to her being named the Chapter’s Western Slope Volunteer of the Year in 2006, 2013 and 2015.
I am very fortunate and blessed. I have MS, but it doesn’t have me. I will continue to fight back and will never give up. she emphasized. “I love what I do; it makes me feel good to help out wherever and whenever I can. I don't volunteer because I want something special in return. I contribute because I can do a lot of things and it would be a sin to waste my life by sitting around and not being productive. “It’s exciting for people with MS, because
there are medications out there now. When I was diagnosed in the early 1980s, there were no medicines and no MRI’s. I love the progress being made. I enjoy helping others and reach out to as many people as possible. It’s especially important for newly diagnosed people to know they are not alone. There are numerous opportunities to connect and get involved,” she added. Next up on Faye’s list? She will take another step to raise community awareness by training to be an MS Ambassador. “Faye has been an incredible volunteer,” said Suzie Reel, community outreach coordinator for the Chapter’s Western Slope Region. “She is always in great spirits and putting her best foot forward, and it shows in the work she does as a volunteer. I have truly appreciated her dedication, support and hard work as an MS volunteer.” “It’s in giving that we receive,” said Faye. She exemplifies these words to live by. n
To find volunteer opprotunities in your area contact Sarah Ness: Email: sarah.ness@nmss.org
2016 EVENT
VOLUNTEERS NEEDED Every year 2,000 volunteers contribute 29,000 hours to the National MS Society in Colorado and Wyoming. Our volunteers make a difference in the lives of people affected by MS and are vital to the success of everything we do! REGISTER TODAY Phone: CO: 303-698-5443 WY: 307.433.8664 ext 15443 Email: cowyvolunteer@nmss.org For more information visit curemsco-wy.org
11cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
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ADVOCACY
the Congressional MS Caucus, Diana’s leadership on 21st Century Cures in the U.S. House of Representatives is critical to helping us stop MS in its tracks,” Zagieboylo added.
NATIONAL MS SOCIETY REPRESENTATIVE OF THE YEAR
AWARD
Rep. Diana DeGette is the National Multiple Sclerosis (MS) Society’s 2015 U.S. Representative of the Year. In a bipartisan approach, Rep. DeGette championed the introduction and passage of the 21st Century Cures Act (H.R. 6) in the U.S. House of Representatives, aimed at modernizing the discovery, development and delivery of treatments, and accelerating the path to cures for diseases including MS. This landmark legislation would also increase resources for the National Institutes of Health (NIH) and the Food and Drug Administration, and establish a data collection system that would help researchers better understand the incidence and prevalence of neurological diseases in the U.S., including MS.
ADVOCACY
THE FOREFRONT OF CHANGE Since her daughter Alison was diagnosed with multiple sclerosis in 1998, Pat Thomas has kept herself, as she describes it, at “the forefront of change.” She advocates for Alison and other people who live with MS, telling their family’s story to legislators. “Advocacy gave me something really meaningful to do about MS,” says Pat, who lives with her husband Leon in Columbia, Maryland. Each year, the family goes to their state capital of Annapolis and sometimes also to Capitol Hill as part of the Society’s annual Public Policy Conference, to raise crucial awareness. “A lot of [legislators]
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U.S. REPRESENTATIVE. DIANA DEGETTE Rep. DeGette has been a continuous supporter of increased investment in the NIH, the largest source of funding for MS research in the world. She also has cosponsored the Ensuring Access to Quality Complex Rehabilitation Technology Act (H.R. 1516), which improves access to and quality standards of individuallyconfigured wheelchairs, and seating and positioning systems, so that people with progressed MS can have their medical needs met and remain independent. “We are pleased to name Diana DeGette as the U.S. Representative of the Year,” National MS Society President and CEO Cyndi Zagieboylo said. “As one of the leading voices in the healthcare debate in this country, and a member of
really didn’t know that much about MS. We changed that,” she says. After she stopped working three years ago, Alison now joins her parents on their visits to legislators, making it a family activity. “She’s been able to come and see what her parents were doing all these years,” says Pat. “It has been eye-opening for her.” But the impact is mutual. When Alison shares what it’s like to live with MS every day, Pat says the legislators also have their eyes opened. “To put a face to their policy is so important for them,” she says. In 2013, Pat reached out to her sorority, Delta Sigma Theta Sorority Inc., to create a partnership with the National MS Society. The sorority, which is committed to public service with a primary focus on the black community, has more than 200,000 members nationwide. In 2015, the sorority deepened their commitment, announcing
“By increasing funding for research and access to treatments, we can make a real impact on the lives of hundreds of thousands of Americans living with MS,” said Rep. DeGette. “I am honored to be recognized by the National MS Society for my work breaking down partisan borders and passing the 21st Century Cures Act. I look forward to continuing this partnership so that we can get this crucial bill to President Obama’s desk and signed into law as soon as possible.” The National MS Society honorerd Rep. DeGette with the U.S. Representative of the Year award during its 25th annual Public Policy Conference, held March 14 to 16, 2016. The event brings close to 350 MS activists from across the country to D.C. to educate elected officials about the needs of people affected by MS. n
the partnership as a strategic priority. “The real meat of it is to get out the information that [African Americans] have MS,” says Pat. “This is our disease too.” To that end, the sorority is reaching out about MS-related resources and programs, and recruiting volunteers for Society events. (To locate Delta chapters in your area, deltasigmatheta.org). “Leon and I want to see a cure before we leave this earth,” says Pat. “I hope we do.”
PAT ON HER WAY TO CAPITOL HILL (L) MS CONNECTION: SPRING 2016
RESEARCH
CYCLING INSPIRATIONS
UNDERSTANDING CHAMPIONS
technology and complete the sessions at home. This study also provided evidence for “neuroplasticity,” the idea that the brain is capable of changing in ways that may improve people’s day-to-day
BY NICHOLAS LAROCCA, PHD
FUNCTION.
A big part of my excitement at the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis, or ECTRIMS, in October 2015 was seeing so many researchers from around the world working hard to find the best solutions for people affected by MS. I found this to be especially true in the growing area of lifestyle and wellness research — exploring diet, exercise, physical activity and other approaches — all of which people can manage themselves to improve how they feel and possibly how their MS evolves.
NUTRITION AND DIET The idea of intermittent fasting as a way to fight inflammation is being explored by MS researchers. But anyone who’s tried it knows how challenging it can be to stick with it. That’s why I was intrigued by a small trial involving 48 people with relapsing-remitting MS done by Dr. Markus Bock and colleagues (Universitätsmedizin Berlin). The investigators studied various diets that may affect “ketone bodies” — molecules in the liver that may protect the brain and spinal cord. Compared to participants who followed their usual diets, participants who followed either a “ketogenic diet” (a high-fat, adequate-protein, lowcarbohydrate diet) or a prolonged-fasting diet (an initial seven-day fast followed by a Mediterranean diet) reported improved quality of life. These results are encouraging; hopefully we will see results in larger numbers of participants in the future. Another interesting study reported by Dr. Aiden Haghikia (Ruhr-University Bochum, Germany) and colleagues had previously found in mice that gut bacteria giving off short-chain (versus medium- or longchain) fatty acids could protect against the development of MS-like attacks. To translate these results to human beings,
the team administered daily capsules of “proprionate,” which contains shortchain fatty acids, to 18 healthy volunteers. They found no side effects, but more importantly, cells that activate immune attacks in MS were suppressed, while other cells, call Tregs, that turn off attacks, increased by 25-30 percent. This early report shows the potential of a nutritional supplement that could be tested for its benefits in people with MS.
Meanwhile, a team from Denmark and Belgium led by Dr. Ulrik Halgas (Aarhus University) noted that people with MS tend to lose muscle mass and that they have fewer “myogenic stem cells” — cells in the body that help rebuild muscle. The team reported that after a 12-week, high-intensity training program (involving exercise machines for strengthening upper and lower body muscles), the number of myogenic stem cells more than doubled in people with MS. This kind of exercise program may not be for everyone, but it’s encouraging to know that such regrowth is possible.
EXERCISE AND INNOVATIVE TECHNOLOGY
IMPROVING COGNITIVE FUNCTION
WELLLNESS IS OF GROWING INTEREST TO MS RESEARCHERS
We are seeing more studies on the benefits of exercise and physical activity in people with MS. As research advances, we’ll share it so people with MS will have the information they need to choose what’s right for them. Researchers are looking at how exercise may lead to changes in brain function. Dr. Francesca Tona (Sapienza University, Rome) and colleagues looked first at whether 26 people with MS with balance problems would benefit from homebased training using videogames and the Wii balance board five times a week for 30-minute sessions over 12 weeks. Many experienced improvements in their balance after the program. Next, the researchers explored how “functional connectivity” — the connections between different areas of the brain measured using neuroimaging — changed after the 12 weeks. They found increased connectivity in several areas of the brain including the cerebellum, which controls bodily movement. This is particularly exciting because participants didn’t have to go to a gym or healthcare facility; instead, they could access the
cureMSco-wy.org 1-800-FIGHT-MS (344-4867)
Finally, I am encouraged to see more studies that show how cognitive rehabilitation can improve learning and memory in people with MS. After all, cognition is an important part of what makes us feel well. A team from Italy and the United Kingdom, led by Dr. Micaela Mitolo, tested an intensive program designed to target multiple areas of the brain and thus multiple cognitive problems. Among the 15 people who underwent one-hour rehab sessions for five days a week for four weeks, cognitive function improved, even in areas not specifically involved in the training. Brain imaging also showed that compared to the participants who did not undergo the program, those who did experienced increased functional connectivity. n
To stay up to date on MS research, sign up for MS eNews at: nationalMSsociety.org/signup
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RESEARCH RESEARCH
ON THE HORIZON BY MARK ALLEGRETTA There was a lot of excitement at the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis, or ECTRIMS, in October 2015, about the emergence of new treatment approaches for all forms of MS — including progressive MS.
MAKING A BUZZ Perhaps the biggest “buzz” was around results presented on studies of the monoclonal antibody ocrelizumab in relapsing-remitting and progressive MS. Ocrelizumab targets a protein that appears on immune B cells during specific stages of their life cycle. B cells make antibodies to help fight infection and perform other functions to stimulate the immune system. Scientists believe ocrelizumab destroys the group of B cells that include those that contribute to MS, but leaves other B cells intact that are fighting infections or are prepared to fight new ones. A highly anticipated presentation described the results of a clinical trial of ocrelizumab involving 732 people with primary-progressive MS. Participants were given either ocrelizumab or placebo by
of progression of clinical disability by 24 percent, and had other positive outcomes. The main side effects were reactions to the infusions, and the incidence of serious infections was relatively low. This is the first large-scale clinical trial to show positive results in people with primaryprogressive MS. In addition, results were presented from two phase III trials of ocrelizumab in relapsing MS. In both trials, the treatment performed very well against Rebif in people who had never been on any MS therapy, as well as those who had tried other therapies. The reported results showed that ocrelizumab reduced the risk of relapse by 46 to 47 percent compared to Rebif, reduced the risk of disease progression by 40 percent, and had other positive outcomes. The sponsor, Genentech (a member of the Roche Group), stated that it plans to apply for marketing approval from the FDA in early 2016.
A GENERIC POSSIBILITY Another intriguing trial result came from a group of investigators led by Dr. Luanne Metz (University of Calgary) who conducted a Phase III trial of a relatively inexpensive oral antibiotic called minocycline. Minocycline has been on the market for decades and is often prescribed to treat acne, and in addition to its bacteria-killing action, it reduces inflammation. The trial tested minocycline against placebo in 144 people across Canada who had clinically isolated syndrome (CIS) — which means they have early possible signs of MS but haven’t yet shown enough signs or symptoms to be diagnosed with definite MS. The goal was to determine if minocycline, taken orally at a dose of 100 mg twice a day, could reduce the proportion of participants with CIS who converted to MS over a six-month followup period.
in-vein infusions about every six months. Results showed that compared to placebo, ocrelizumab significantly reduced the risk
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The secondary objective was to determine whether the effect could last up to two years. Their results showed that over six months, those taking twice daily minocycline had a 44.6 percent reduced risk of developing definite MS, compared
RESEARCH
RESEARCHERS EXPLORE NEW APPROACHES TO STOPPING MS. to those taking placebo. There were no unexpected side effects reported from the trial — the most common include potential for diarrhea, dizziness or light-headedness, grey discoloration of the skin or tissue in the mouth or teeth, sun sensitivity, and secondary infection due to fungi. These results bring up a lot of questions, such as: What are the longer-term benefits or side effects? Would this help people who already have MS? Would regulators approve a generic drug like this? Would its price alone influence doctors to prescribe it?
MORE TO COME These are only a few of many new approaches being explored to stop the MS process and restore function. If you are interested in these and the many other reports from ECTRIMS, visit ectrims-congress.eu to browse hundreds of abstracts to get an idea of what solutions are on the horizon for people with MS. One important caveat — everything presented at a meeting such as ECTRIMS is considered preliminary until it has been thoroughly peer-reviewed for publication in a respected journal — so the information shared here is based only on the information we’ve heard so far. n
To stay up to date on MS research, sign up for MS eNews at: nationalMSsociety.org/signup
MS CONNECTION: SPRING 2016
FREE
COLORADO
READING RESOURCES
The Audio Information Network of Colorado is one of the nation’s leading
Staying up to speed by reading about current events or reading simply for enjoyment can be challenging for people with visual, physical or reading disabilities, but there are free resources available to help. Reading services are very helpful for people with vision issues, said LeeAnn Bellum, Chapter case management director. “They can also benefit people with MS experiencing cognition problems. Listening to content, or listening to content at the same time as reading the same content, may help with processing information.” Whether sight is impaired or having one is trouble holding a book or turning pages, the following helpful resources are just a phone call or click away.
resources for providing audio news, information and entertainment to the blind, visually impaired and print-disabled community statewide in Colorado. Through this service, registered listeners have free access to recorded programming 24 hours a day, seven days a week, available in both English and Spanish. Programming is delivered through audio programs or downloaded podcasts online, on TV or over a telephone reader system. Through recorded content from more than 100 newspapers and magazine articles, this statewide program provides listeners with everything from national news to local news and community events. To access this free service, people must register by completing a short listener form online or by calling 303-786-7777 or 877-443-2001. For more details, visit aincolorado.org.
The Colorado Talking Books Library (CTBL) is another free library service that loans postage-free recorded and Braille books, magazines and books in large print to Coloradans who cannot see standard print or have a physically based reading disability. This fully bilingual service has more than 35,000 audio books and 22,000 large print books available. To use this service, individuals must complete an application, which is available on CTBL’s website. CTBL books and magazines are recorded in a special format and require special playback equipment. CBTL will loan the equipment, which may be kept as long as the user actively uses the service. If the equipment needs service or repair, return it to the library and contact CTBL to have replacement equipment sent back free of charge.
WANT TO MAKE A DIFFERNECE?
RESOURCES
WYOMING
Wyoming Talking Books provides free library services to Wyoming residents who are unable to read regular print material due to visual, physical or reading disabilities. All library materials are sent and returned through the mail free of charge. Books are available in hundreds of categories, including classics, romances, science fiction, mysteries, westerns, children’s selections and more. There are books by Wyoming authors as well as books about Wyoming. More than 70 magazines in special formats are also available, such as Reader’s Digest, Newsweek, Guideposts, and Wyoming Wildlife. To get started, complete the application available online. Once registered, a digital talking book machine will be sent in the mail, which is on loan to you for as long as you use this service. Utah State Library’s Program for the Blind and Disabled helps Wyoming residents with material delivery. Once set-up, Wyoming Talking Books reader’s advisors will be available by phone and email to order audio, Braille, and large print books and magazines. n
For more information: Colorado: 303-727-9277 cde.state.co.us/ctbl/
Wyoming: 307-856-5653 wyomingtalkingbooks.org
You can be part of helping people with MS 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.
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