MS Connections Newsletter Summer 2016 by The Colorado-Wyoming Chapter of the National Multiple Sclerosis Society

SUMMER 2016

National Multiple Sclerosis Society

MS CONNECTION Colorado-Wyoming Chapter

Colorado-Wyoming Chapter Newsletter

BIKE MS COLORADO RECAP Pg. 4 INSIDE THIS ISSUE:

NEW BOARD TRUSTEES

DIRT FLIES TO END MS

Q & A WITH DR. CORBOY

SWISS ALPS CHALLENGE

LETTER FROM THE PRESIDENT Dear Friends: As we near the conclusion of another successful outdoor event season, it has again been personally rewarding to see and connect with so many of our supporters. The power of thousands of people coming together throughout Colorado and Wyoming with one common mission is both humbling and inspiring - and everyone’s commitment is driving progress. In May, as our Walk MS events were in full swing, I attended the Second Scientific Congress of the International Progressive MS Alliance in San Francisco, where more than - 100 researchers gathered to share progress made, the challenges ahead and next steps to speed the development of therapies to treat progressive MS.

endeavors that make this a very hopeful and promising time. Additionally in May, the Society announced that the FDA had approved the 14th therapy for relapsing-remitting MS, so our arsenal of treatments to manage this disease continues to grow, providing more options for people living with MS.

We remain committed to listening and are receptive to growing ideas that will build connections and expand support. Our inaugural 5K run, held in conjunction with Walk MS Denver (see page 3), generated great excitement and engaged many new supporters. A new run club is forming because of new connections made during the run, which provides another The Alliance is doing exactly what opportunity for people to engage by it was chartered to do – sharing doing something they enjoy together. knowledge and collaborating on a global scale. For example, the historical Another example is The Social, a group for young people with MS practices of some countries only to meet up, have fun and support funding research within their borders each other. These networks are are giving way to funding collegial created based on ideas shared by our research that is blind to geographic supporters and their willingness to step boundaries, increasing worldwide up and work with the Chapter to make funding capacity and ensuring we it happen! If you have an idea and/or are funding the most promising want to get more involved, let us know! research worldwide. We are all part of an active The result? Clues are emerging regarding what is driving progression. movement that spans from local to global communities. Actions feed There is evidence that MS damage momentum, so continue to share your begins early, and there are differences story and let others know how they in where MS lesions occur; people can engage to help everyone affected with progressive MS are more likely by MS. Together we are stronger. to have lesions in the spinal cord Together we are changing lives. than people with relapsing MS. An Together we are leading the way to a allergy medication is being studied as world free of MS. a possible therapy to drive immature myelin-making cells to repair myelin Sincerely, damaged by MS. There were positive results from a large-scale clinical trial of ocrelizumab and better trials are being designed to speed the development of therapies. And Carrie H. Nolan lessons learned from research of other Carrie.Nolan@nmss.org diseases, such as Alzheimer’s, may 900 S. Broadway Suite 250 benefit people living with progressive Denver, CO 80209 MS. These are some of the Alliance’s

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 FDA-approved 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 Corboy, MD Renelle Darr Chris Doerr Marley Hodgson Darrin Johnson Carin Knickel Richard Levin Leeds Pickering Michael Pierce Brandt Wilkins Jo Wilson Tom Wilten Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage

MS CONNECTION: SUMMER 2016

EVENTS IN THE NEWS

CHAPTER WELCOMES

NEW TRUSTEES

Renelle Darr, owner and president of InSight Coaching and Consulting, and Tom Wilten, co-founder and CFO of Cloudworthy have been elected to the board of trustees of the Colorado-Wyoming Chapter, National MS Society.

MS Champion

Hope Award

Jonna Patton

Colorado State University and President Tony Frank

Volunteer, fundraiser and spokesperson for the National MS Society, Colorado-Wyoming Chapter

Philanthropic leaders in Colorado and proud partners with the National MS Society

Embassy Suites Loveland Renelle Darr has more than 19 years of professional services experience in executive coaching, strategic planning, facilitation and change transformation serving health care, telecommunications and consumer products industries, in addition to the nonprofit, education and government sectors.

Wednesday, September 7 To purchase tickets online, visit blacktie_colorado/rsvp and enter event code: MS0907

KEYNOTE SPEAKER

Connie Carpenter-Phinney Prior to Tom Wiltenâ&#x20AC;&#x2122;s present position, he was vice president of corporate development for DigitalGlobe. From 1999 to 2011, Wilten worked in the Corporate Development group at Qwest Communications, where he was responsible for mergers and acquisitions, divestitures and large strategic, complex transaction including leading the process for the $22 billion merger with CenturyLink.

1984 Summer Olympics, winner of the first ever womenâ&#x20AC;&#x2122;s Olympic cycling road race

MS SPIRIT AWARD

Mary Rhinehart

President and CEO of Johns Manville, a global manufacturer of premium building and engineered products headquartered in Denver

Westin Downtown Denver Thursday, September 15 To purchase tickets online, visit blacktie_colorado/rsvp and enter event code: NMSS915 or call 303-698-5446

3 cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

EVENTS Thank YOU 2016 Bike MS Colorado Sponsors THANK YOU TO OUR PREMIER NATIONAL SPONSORS

Congratulations to all the cyclists, volunteers and supporters of the Chapter’s 31st Bike MS Colorado. Sun and fun marked this year’s ride as nearly 3,000 took to the road raising $3.8 million to end MS. Participants gave kudos to Chapter staff and volunteers for once again hosting a safe and very well supported ride. Whether long-term or first-year participants, riding individually or with a team, the motivation to end MS was on full display throughout the weekend.

THANK YOU TO OUR LOCAL SPONSORS LOCALLY POWERED BY

PRESENTED LOCALLY BY

OFFICIAL VEHICLE

SNAPSHOTS After completing his 18th Bike MS, Fort Collins resident James Bird shared that he lost his leg to polio, but that disease was eradicated in his lifetime. Now MS is his cause and he hopes he will also see the end of MS. Anthem’s Jeff Sepich completed his 22nd year and rides for his sister who was diagnosed in 1984 and a niece who was diagnosed in 2013. He noted how different the outlook is for his niece thanks to research progress. It was his teammate Greg Breasher’s first year and the experience left him impressed and ready to do it again. Family participation on Team Patty’s Pack continued to grow as Ed Blach’s youngest son, 12-year old Grogan, joined Ed and his wife Darci and siblings Grady, Brina, Kenzie and Granger for the first time. Blach said his children had raised more than $3,200, which helped the team surpass the $50,000 mark this year; their 10th anniversary. This was the 17th Bike MS for individual rider Bridgette Jenefore who initially didn’t know anyone with MS, but saw the ride as a physical challenge. Through the years she has come to know people at work and at her church living with MS. As he was cooling down after the ride, high roller Kurt Lawrence met with Matt Tarpey, the friend and former co-worker he rides for, who was diagnosed in 2008. Lawrence raises $5,000 a year and summed up the experience saying it was a great ride and the volunteers were awesome.

BIKE MS 2016 Find all your event day photos on Flickr:

flickr.com/nmss_co-wy MS CONNECTION: SUMMER 2016

SWIMMING FEAT

TO END MS

Cody, Wyoming transplants Linda Bell and her husband Cap have been fundraisers for the Society since their daughter Kara was diagnosed with MS 16 years ago. Through the years they’ve hosted wine tasting and wine pairing events, in addition to being Bike MS Colorado regulars for 10 years, riding with their friends and family team Good Velos. In 2006 the Bell’s daughter-in-law Julie was also diagnosed with MS, so as Linda approached her 69th birthday last spring, she decided to celebrate the day by coupling her lifelong passion for swimming with placing the spotlight on MS. “I thought about ways to play off my 69th birthday,” said Linda. “I swim three days a week and have designed a master level swimming

BUZZING ON

SUGAR BEE’S RETIRE AS BIKE MS REST STOP HOSTS For nearly 20 years, Bike MS Colorado cyclists have enjoyed a lunch rest stop hosted by the Walker family’s Sugar Bee team. Now, as Betty and Tim Sr. enter their 80s, they’ve decided it’s time for a change. The Walker’s became involved with the Society when their daughter Kelly was diagnosed with MS in 1988. In 1993, her brothers Tim and Eric formed Bike MS team Sugar Bee, nicknamed for their sister. It wasn’t long after that their parents, Tim Sr. and Betty, also got involved with Bike MS by taking on a lunch rest stop.

EVENTS Swimming 6,900 yards wasn’t a challenge, so I decided to swim 6.9 hours. conditioning program, so I wanted to do something that would stretch me." Local news media picked up on her endeavor and on May 13, 2016 the community was behind her as she embarked on her multi-hour swim. By the end of her last lap, she had completed more than 12,000 yards in the pool and raised nearly $3,500! “I am fortunate to have the health to do this and was able to meet my goals by raising awareness and funds. My daughter and daughter-in-law have been the beneficiaries of much good research, and both are doing well and able to take oral medications

Photo Credit: Raymond Hillegas

Linda Bell Training for her 6.9 hour swim

thanks to the research supported by so many people. “The Bike MS ride is also fun and important to us. The enthusiasm and support we experience on the ride each year is very special and the dollars raised for research is phenomenal. People living with MS are courageous every day and we will continue to be positive and do what we can to ensure that a cure is found to end MS forever,” Linda added.n

What may seem simple is no small feat. Preparation involves everything from hauling and pitching tents, and setting up chairs and bike racks to decorating port-o-potties. The Walkers even developed clever Burma-Shave style signs with MS messages leading up to the rest stop. “It was a hard decision to quit, but we’re getting older and it’s time to pass this opportunity on to others,” said Betty. “It has been so much fun through the years and we view the Society as a second family. We’ve met so many wonderful people that we would never had met if not for MS, and it’s brought us closer together as a family. We can’t say enough about the efforts of the Society and all the people who freely devote time for a good cause. I like to think that through our involvement we’ve helped to take the sting out of MS, but we still want to see the mystery of MS solved,” she added. “The Walker’s ability to bring family and community together has added great value to the MS movement,” said Chapter President Carrie Nolan. “They exude love, dedication and teamwork. Everyone knows the Sugar Bees and

cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

Bike MS rest stop hosts Betty and Tim Walker having fun with Carrie Nolan look forward to their motivational signage leading up to the lunch rest stop. Their efforts and engagement ensure everyone knows why they ride and words cannot truly express our thanks and appreciation for their enthusiastic support through the years,” Nolan added.n

In 2010, the Sugar Bee’s became the Chapter’s first friends and family team to surpass $1 million in cumulative fundraising, but they didn’t stop there. The Sugar Bees are well on their way to reaching the $2 million mark!

EVENTS

Walk MS 2016: Rain or Shine!

Cold and wet spring weather marked many of this year’s 2016 Walk MS events, but it didn’t dampen the spirits of thousands of walkers who stepped out at locations across Colorado and Wyoming to end MS while raising more than $1 million!

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COLORADO SPRINGS

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ONE MORE WALK MS 2016 EVENT! Walk MS Gillette Saturday, September 10, 2016 Dalbey Memorial Park | 9am

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NEW! Denver Running Group Connect with other active individuals affected by MS in the Denver Metro area and train for the 2017 run option at Walk MS Denver. Email Helen Dickens at hdickensmolk@gmail.com for more information and to get involved.

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016 2 u o Y k n Tha nsors o p S S M k Wal THANK YOU TO OUR PREMIER NATIONAL SPONSORS

THANK YOU TO OUR NATIONAL SPONSORS

THANK YOU TO OUR LOCAL SPONSORS

DIRT FLIES

EVENTS

TO END MS In the heat of July, more than 3,000 people took on muddy obstacles at MuckFest MS. Held at a new location in Parker, Colorado this year, the 5K course challenged the valiant participants with muck-filled mazes, pits, craters and more than 15 gigantic steel obstacles. Second year participant Ellen Jones was among those who came out and braved the mud. She is a member of the 200-strong Muckin’ for Michael’s Mom team and knows the impact of MS well - the disease targeted her mother, brother, aunt and a sister (now deceased). “MS affected each of my family members differently and with varying degrees of severity. My mother was diagnosed later in life and MS plaques are in her spine, which has led to her being quadriplegic. My brother and sister were diagnosed at younger ages and plaques were mainly in their brains. Their symptoms began with vision problems that were followed by cognitive and movement issues. Interestingly, we have been doing a family history and we have definitely seen a pattern of MS on my mother’s side of the family,” Jones said. “Although we have taken advantage of Chapter programs through the years, I became aware of MuckFest MS through my niece and

Ellen’s 80-year-old mother, Beverly Soholt nephew who had participated. I thought I could handle it so I tried it last year and had such a good time that I was ready to do it again this year! “Muckfest MS is a lot of fun and the camaraderie is special, but there’s also a good cause behind it. I enjoy all the laughter and doing this with friends on the team. It’s also very motivating to see so many people come together to raise funds that will help move us closer to finding a cure,” Jones emphasized. Nationwide, more than 40,000 MuckFest MS participants raised over $3 million in 2015 and since its inception in 2009, MuckFest MS muckers have raised more than $22 million. For information on MS, volunteering, making a gift and other upcoming Chapter events, visit cureMSco-wy.org.n

Muckers at Muck Fest 2016 cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

RESEARCH

PROGRESSIVE

MS UPDATE John R. Corboy, MD, is a professor of Neurology, University of Colorado Denver, School of Medicine and a trustee of the Colorado-Wyoming Chapter, National MS Society’s board of directors. Mark Ackerman, CBS4 in Denver, recently interviewed Dr. Corboy regarding progressive MS and related research efforts. Following are some of the comments shared during the interview.

What is progressive MS?

Progressive MS starts typically between the ages of 35 to 45, or even 50, and is characterized by slow worsening, primarily of walking, gait, balance and sometimes cognitive dysfunction as opposed to relapses which are punctuated by symptoms that come and then go away. Progressive patients my have transitioned from a relapsing form, referred to as secondary progressive MS, or have progression from the outset, primary progressive MS. To be clear, however, we really think of these as phases of the illness, not different conditions.

How prevalent is progressive MS?

Progressive MS can be thought of a couple of different ways. One is what percentage of patients ultimately have a progressive form of MS. In natural history studies, depending on what studies you see, anywhere from 60 to 70 percent of patients will ultimately have some slow progression over time. The hope is that with the new therapies that are focused on treating the inflammatory component of MS, the early portions of MS, that less people will actually go into progressive MS phase. One important part of trying to have less progressive disease over time is treating the newly diagnosed patients with relapsing forms of MS as aggressively as possible so they have no more relapses. We know that early relapses are especially tied to the risk of having progressive MS and going into a progressive phase much earlier. That’s

Q&A

With Dr. John R Corboy

an extremely important part of what we can do right now - today - to have less progressive disease.

Are there any drugs out there that can stop the progression of progressive MS?

There have been a number of clinical trials with patients with progressive MS using a variety of different medications. Unfortunately most of them have been negative when they've looked at slowing the progression. Most recently however, one new drug (ocrelizumab), which is not yet approved, has been shown to slow the progression in primary progressive MS patients. In addition, in multiple progressive MS trials, relatively younger patients, especially those with active inflammatory lesions on MRI scans or a recent relapse, have benefitted from the use of disease modifying therapies. We are hopeful that more studies will be done with this drug, ocrelizumab, or other medications and there are a variety of studies underway right now looking at novel ways that you might not only stop progression, but also might re-myelinate the nervous system. That is, add more myelin wrapping around the nerve cables - the axons - or do what's known as neural protection, protecting the nerve from damage not necessarily from the immune system, but other aspects that cause degeneration in the nervous system.

Are there treatments available to stop progressive MS? The approach to patients presently who have progressive MS has focused on a variety of things, including

dealing with symptoms, and there are many symptoms that can be treated effectively through physical therapy and other things to maintain the highest degree of conditioning. There are also a number of factors that patients can control themselves, such as smoking, exercise and their weight. Vitamin D may play a role as well, but we are still searching for the primary way that we might actually regrow nerves – regrow myelin – not just stop the progression of MS, but hopefully make that go in the other direction.

How far away are we from that?

I can't give a particular timeline as to when we might see a specific therapy that would either stop or reverse the decline that we've seen with progressive MS, but there has never been a more hopeful time for progressive MS. The National MS Society and International Progressive MS Alliance, which is comprised of 15 groups from around the world, are fighting courageously and endlessly to work on progressive MS because it remains the single most important untreated aspect of MS right now.

How important is the global effort, as opposed to the MS Society in the United States, trying to take on progressive MS? MS is a worldwide phenomenon, although you might see it in certain societies somewhat more so than others. The reality is that this affects and disables large numbers of people in different parts of the world, so having different groups from around the world

MS CONNECTION: SUMMER 2016

involved, especially Western Europe and Canada, is incredibly important. Otherwise we may really never have the opportunity to deal with this progression as we know it.

Is progressive MS the biggest challenge for MS researchers right now?

Progressive MS is the biggest challenge. The reality is that MS is a complicated disorder. There is both an autoimmune, inflammatory component, and then there's also this degenerative component similar to other conditions like Alzheimer's or Parkinson's, and the degeneration of the nervous system is a very difficult topic to get at, as such has not lent itself to any obvious therapies as yet. In addition, the most disabling time for patients is when they have progressive MS, so ultimately that’s what affects them, families and society to the greatest degree.

RESEARCH

six to 12 months, bringing the number, depending on how you count, to 15 or so. That's a dramatic change, which is comparable to or greater than any other part of all of organized medicine in terms of the leaps that have been made forward.

How important is the funding?

Funding is incredibly important for any medical discoveries that go ahead, especially with regard to progressive MS. This is a very difficult area to get at, similar to Parkinson’s, Alzheimer’s and other degenerative disorders. There is simply no substitute for funding and that funding comes from all over the United States with the National MS Society. The many donors, the people who go on the Society’s walks, the people who go on the bikes, the people who go to the dinners -we'd like to thank them. Their money, their time, their energy are well appreciated and we don’t get anywhere without their help.n

The last story I did about MS was with a man around 40 who lost his dad to MS, and is now a father. He said ‘I hope my son can live in a world and that we will speak about MS in the past tense.’ Are you hopeful?

Medicare Open Enrollment (Includes Part D) Oct. 15 - Dec. 7

I'm very hopeful that we will be reading about MS in the history books and I remain remarkably optimistic given the changes that have taken place in the past 23 years. When I finished my fellowship in 1992 we had zero therapies available for MS. We will have two more hopefully in the next

Marketplace Open Enrollment (For Jan. 1 coverage) Nov. 1 - Dec. 15

John R Corboy, MD

FDA Approves 14TH Therapy for Relapsing MS On May 27, 2016 the FDA approved Zinbryta, the 14th therapeutic option for adults with relapsing forms of MS. Zinbryta is an immune-modulating therapy taken by injection every four weeks. In a phase 3 clinical trial, Zinbryta was show to reduce annual relapse rates by 45 percent and to significantly reduce disease activity observed on MRI scans compared to Avonex.

Due to its safety profile, this therapy is generally reserved for people who have had an inadequate response to two or more MS therapies. Information on availability was not yet available when MS Connection went to press.

For more MS research updates and info visit:

cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

nationalMSsociety.org/research

RESEARCH

NEW DIRECTIONS IN

PROGRESSIVE MS

GIVING OPPORTUNITIES TO YOUNG MS RESEARCHERS Progressive multiple sclerosis was the focus at the first stand-alone meeting of the Americas Committee for Treatment and Research in MS (ACTRIMS), held late February in New Orleans. Researchers from across the world discussed new directions aimed at finding solutions for people who live with progressive forms of the disease, with a particular emphasis on giving younger investigators opportunities to share their research.

Tracking MS

In his keynote address, Dr. Jerry Wolinsky from the University of Texas Health Science Center at Houston noted that while progress has been made in characterizing different forms of MS, the MS research community still needs better ways of predicting early how an individual’s MS will proceed and determining the best treatment course for that individual. The award for best oral presentation by a young investigator went to Dr. Nathaniel Lizak (Monash University) for his talk on a study using MSBase, a database that tracks the clinical experiences and treatment histories of people with MS from 28 countries. One of the findings from Dr. Lizak and his team was that the longer a person was on one of the newer, stronger MS therapies, the less likely they were to progress to more advanced MS.

Addressing inflammation

their most favored dietary approaches include the paleo diet, a highcarbohydrate diet, a low-salt diet and a modified Atkins (low-carbohydrate) diet.

In a study comparing markers of immune activity in the spinal fluid of people with relapsing versus progressive forms of the disease, Dr. Mika Komori (National Institutes of Health) and colleagues found increased markers of inflammation that suggest immune cells are stuck inside areas of the brain, spinal cord and the meninges, a layer of tissues surrounding the brain, where most therapies would not reach them. Some MS researchers from different institutions are focusing on the latter, exploring the role that meningeal inflammation might play in MS.

The researchers concluded that interest was high enough to recruit participants for a possible clinical trial on diet as a complementary approach to managing MS.

MS researchers hope to understand why approved therapies for relapsing MS don’t benefit most people with progressive MS.

Dr. Pavan Bhargava (Johns Hopkins University) and colleagues used powerful MRI to identify and track meningeal inflammation in mice with the MS-like disease EAE, an approach that could be used to screen therapies and help understand why this inflammation occurs in MS. Dr. Bhargava will continue these studies with the support of a new Career Transition Fellowship from the National MS Society. Researchers from the Imperial College London and University of Verona reported finding inflammatory messenger proteins suggestive of meningeal inflammation in people with severe damage from MS. This research, funded by the International Progressive MS Alliance, could help predict early in MS who might need aggressive therapy aimed at reducing the risk of progression. In addition, Dr. Peter Calabresi (Johns Hopkins University) is leading a clinical trial of rituximab given directly into the spinal fluid (intrathecally) in order to stop meningeal inflammation.

RESEARCHERS GOING OVER RESULTS Exercise and cognition: In a preliminary study, Dr. Brian M. Sandroff (Kessler Foundation) and colleagues found that treadmill walking, whether light, moderate or vigorous, might improve an aspect of cognition called “inhibitory control,” which is the ability to bypass automatic responses. The next step is to use these results to design and conduct controlled trials to help determine any longerterm benefits of walking on cognitive abilities in people with MS. Mindfulness: A cross-institutional Canadian team reported results from a questionnaire on mindfulness, which emphasizes improving awareness and acceptance of moment-tomoment experiences. Responses showed links between higher levels of mindfulness and lower levels of depression, anxiety and fatigue, as well as perceived cognitive deficits and health-related quality of life. All of the participants indicated that they were willing to participate in a trial of a mindfulness training program that includes meditation and yoga.n

Paths to wellness

Diet and MS: Participants in a mail survey conducted by researchers at the University of Virginia responded that

Learn more: nationalMSsociety.org or 1-800-344-4876

MS CONNECTION: SUMMER 2016

RESEARCH

people with RIS. Of this group, 128 (28 percent) went on to develop a first neurological event consistent with CIS or relapsing MS while approximately 12 percent went on to develop primary progressive MS, which mirrors the frequency of developing this form of the disease as seen in other studies.

A RARE GLIMPSE A new study provides a rare glimpse into the very early stages of multiple sclerosis, even before symptoms begin. What’s known as clinically isolated syndrome, or CIS, describes a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation and demyelination on one or more sites on the brain and spinal cord. Typically if an MRI scan reveals lesions similar to those seen in MS, the likelihood is higher that the person experiencing CIS will go on to develop MS; conversely, if CIS is not accompanied by MRI-detected lesions, he or she has a lower likelihood of developing MS.

A “silent” syndrome

STUDIES USING MRI SCANS MAY HELP IDENTIFY MS EARLIER that while they aren’t experiencing symptoms, doctors have discovered areas of inflamed or damaged tissue during the course of an MRI scan that the person had for unrelated reasons. Researchers have been increasingly focusing on this phenomenon, called “radiologically isolated syndrome,” or RIS, which—like CIS—may or may not develop into definite MS.

Some people have been found to have clinically “silent” lesions, meaning

The study, which was published in Annals of Neurology (December 2015), examined MRI scans of 453

MONEY MATTERS

satisfied with current employment policies and practices in these areas:

NEW FINDINGS ON EMPLOYMENT & MS New studies funded by the National MS Society surveyed people with multiple sclerosis to explore whether the Americans with Disabilities Act (ADA) has improved employment issues for people with MS. The results of these studies, published in Work (November 2015), may help provide data to influence public policy and offer practical ways to address employment concerns.

Identifying Issues

In one study, less than 40 percent of 1,924 people with MS who responded to a questionnaire were paid employees at the time, even though 98 percent had a history of working and 82 percent were working at the time of their diagnosis. The respondents said they were not

Those who developed primary progressive MS were more likely to be men, were significantly older, and were more likely to have MS-like lesions in the spinal cord compared to those who went on to develop CIS or relapsing-remitting MS. This research may help eventually point the way to finding ways to identify and track primary progressive MS earlier. This in turn may help to improve access to care for those living with primary progressive MS.n Sign up for MS eNews: nationalMSsociety.org/signup

• disclosing disability status; • discussing job accommodation needs with employers; • requesting a review of accommodation needs without fear of retaliation; • understanding ADA employment protections; • exploring reassignment to other positions within the same company; and • understanding the Affordable Care Act (ACA) and how it relates to employee benefits. Researchers then sent a second questionnaire to the same group to determine relationships between quality of life and illness, and employment and psychosocial factors. Respondents indicated a higher quality of life with increased education levels, employment status and job satisfaction.

cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

DISCLOSING MS AT WORK CAN BE DIFFICULT

Finding Solutions

The researchers, led by Phillip Rumrill, Jr., PhD, (Kent State University) suggest that employers work with rehabilitation professionals to determine how accommodations can enable people with MS to stay in their current jobs and that support be provided when reassignment to a new position becomes necessary.n Learn more: nationalMSsociety.org or 1-800-344-4876

LIVING WITH MS

CHAPTER RESOURCES

PROVIDE A RANGE OF LIFE CHANGING SUPPORT

MELANIE ON THE DECK OF HER NEW APARTMENT Melanie Peterson remembers the day she woke up and didn’t have sight in her right eye. “It was really

COLORADAN TAKES ON

SWISS ALPS CHALLENGE

Alice Plain on AN ICE RIDGE ON THE TOUR Alice Plain, director of golf at Vail Golf Course, has always loved the outdoors and embraced an active lifestyle. However, things changed in December 2005 when she woke up one day to find her lower legs were numb. Thinking she had slept ‘funny’ or pinched a nerve, she went to work. The next day the numbness hadn’t

scary. I immediately had my vision checked and was then referred to a neurologist,” said Peterson. Eight MRIs and a spinal tap later, she learned she had MS. “My neurologist suggested I contact the Society. Once I connected with the Chapter, they sent someone over to assess my apartment. There were no grab bars near the bathtub or shower and I lived on the second floor and I was having trouble with stairs. I always feared that I’d lose my balance when I carried groceries up to my apartment. “The care manager said I needed a safer environment and they had funds that would cover the costs of moving. I was so grateful and am still struck by it, especially since changing homes involved moving my baby grand piano! I now live in a ground level apartment that is equipped with the things I need to remain safe and independent." Chapter support didn’t stop there. “I used to love to hike, but stopped gone away; in fact it was increasing and moving up her body, so she called her physician to get checked out. In April 2006, at age of 39, she was diagnosed with MS. Initially, Plain was having trouble with her legs, and her goal was simply to be able to walk around the block. Nearly 10 years to the day of her MS diagnosis, Plain was ready to attempt a new goal - a five-day ski/ mountaineering hut trip in the Swiss Alps. This dream adventure came with several looming concerns - the glaciers, the exposure and steep grades of the Alps would be both mentally and physically challenging. Although she trained hard all winter, she also knew what she was taking on would be a delicate balance between being prepared and overexerting, which would tip the MS scale against her. “ Right up to the start I wasn’t sure how it would go, but this was a dream and I was determined to try,” Plain said. On April 5, 2016, Plain and a friend set out on the ski adventure that

because I was afraid of wiping out. The Chapter linked me to a walking pole class, which was very beneficial and now I keep poles in the trunk of my car. I still don’t hike but they are helpful to have when I need balance support. I was also able to take a class on living with chronic illness, which was also very helpful. I learned a lot from the class and from attendees as we shared stories with each other. “I am mobile and able to work and move, just not too fast. I still have fatigue and dizziness, but the help and support of the Chapter has made such a difference for me. I encourage others not to hesitate to call for help or advice, and to learn about the abundance of resources available. They can be life changing.”n

Learn more about care management & The Independent Spirit Fund: cureMSco-wy.org or 303-698-5407

began in Zermatt, Switzerland and ended in the mountain valley village of Zinal. “Our group consisted of six skiers and two guides. Throughout the week our group became quite close, and we all supported each other along the way.” The group traveled several kilometers on skis and Plain experienced her first winter mountaineering with crampons strapped to her ski boots as she hiked up a steep couloir and traversed a magnificent knife-edge ridge. “We celebrated our last night together and were thankful for accomplishing the tour as a group. We all developed a strong relationship through this experience. It was exhilarating and quite a personal achievement,” Plain said. “Each and every day I think about what I can do today, which is the philosophy I live by. Set goals higher than you think you can achieve and don’t let MS rule your life. Simply live life in a positive manner,” she emphasized.n

MS CONNECTION: SUMMER 2016

LIVING WITH MS

WE ARE STRONGER THAN MS The new National MS Society awareness campaign Together We Are Stronger features people impacted by MS and how their fierce resolve has developed solutions that unite us and make us stronger than MS. This unique campaign was developed pro-bono in partnership with the renowned advertising agency Wieden+Kennedy, and was highlighted in March for millions of people to see on electronic billboards in New York City’s Times Square, Port Authority, Penn Station, and Macy’s Herald Square locations among many other activities across the country. At WeAreStrongerThanMS.org, you can find these diverse, innovative solutions to overcoming the challenges of multiple sclerosis,

LIVING WITH MS

A SECOND FAMILY

By Tom Bosica I was diagnosed with multiple sclerosis in 2003. Not a terrible surprise since I had been experiencing symptoms for a while. In a way, I was relieved. I learned that MS was going to affect my life, but I also learned there are ways to cope. I learned that attitude and spirit are keys to living life to the fullest and that I would

VIEW DAN’S VIDEO AT http://ntl.MS/keepfishing demonstrating how together we are stronger than MS. Stories include that of Colorado resident, Dan Melfi, who says it is part of his family culture to fish. “My grandfather was a great fly fisherman into his late 90's,” remembers Dan. “It’s going be tough for me to stream fish from now on,” says Dan, referring to mobility challenges related to his 2009 MS diagnosis and the hike that is often required to access a stream. “I can’t stand for an extended period of time. And I can’t fly fish where you stand out in the middle of the stream.”

have to remind myself of that from time to time. And it was reaffirmed for me that I have a loving wife, terrific kids, and family and friends who help me navigate through a sea of the unexpected. Life did change. My mobility was severely impacted, first a cane, then a walker, and now a wheelchair. Shortly after my (earlier than planned) retirement, I received a call that the National MS Society was holding a meeting to see if there was interest in an MS support group. When I went, I was impressed by the number of people attending and by the leader’s enthusiasm. Before I knew it, I was drafted as the new group facilitator. I had enough sense to say I would accept only if there were a cofacilitator. Luckily, two great people stepped forward. The three of us met several times to plan and our group, Keep S’myelin Mid-Coast MS Awareness Group, was born in the fall of 2006. Like others,

cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

So Dan found and stocked a special vest — a fishing coat — with everything he needs: “my fly book, bait, bug spray.” The coat is lightweight so Dan can wear it, with the strap of his folding chair slung over his shoulder, as he uses his arm crutches to travel from his car to the lake’s edge. “I don’t have the ability to stand. So I take the chair.” Dan loves that he can stay out fishing for hours, because “I have the chair. And my pole. And everything’s on my body.” “Once you get in the chair and you start casting, you’re fishing. You sit back and you look at life and it’s like, ‘wow, this is pretty cool.’”n Learn more: WeAreStrongerThanMS.org

we had our early bumps but settled into a comfortable routine. From the beginning, we emphasized that MS didn’t define who we were; we were individuals who just happened to have MS. Most importantly, we were committed to keeping our meetings upbeat and fun. This was not an attempt to minimize the devastation MS can cause, but to keep everything in perspective. Well, we are in our tenth year! We are a strong and varied group and I look upon these people as my second family. We have learned so much from each other, we share sadness, we laugh a lot and that feels good. I am happy that I helped create this group, but it really is the members who keep it thriving and moving forward.n

Find MS support groups in your area: nationalMSsociety.org/ supportgroups or 1-800-344-4867

RESOURCES

ARE YOU PREPARED FOR A

NATURAL DISASTER? Flooding, wildfires, tornados and other natural disasters are frequently in the headlines and often the people affected literally have just minutes to evacuate. Are you prepared if you had to leave your home on a moment’s notice? Heather Gomez, senior programs manager with the Chapter’s southern Colorado office, knows firsthand the importance of being prepared for an emergency. “We lived in Colorado Springs and in 2012 we were impacted by the Waldo Canyon fire. We had about five hours notice before we were mandated to evacuate our home. Luckily, while I was packing shoes and clothing, my husband was getting items such as insurance records, car titles and the deed to our house. I didn’t even think about things like medications at the time. "It’s not easy to think clearly in emergency situations, which is why

having a plan is so helpful," Heather added. There is no time like the present to make your emergency preparedness plans. Here are some helpful resources available to get you started: “Preparing for Disaster for People with Disabilities and Other Special Needs” is a publication of The American Red Cross and FEMA that provides an overview of topics to think about ranging from creating a personal support network to pet care. It also includes an action checklist of items to do before a disaster strikes, as well as a list of items to create a disaster supply kit. The free, downloadable booklet can be accessed by visiting redcross.org or by calling FEMA at 1-800-480-2520. The Red Cross offers free, downloadable mobile phone apps, which are available through the Apple App Store or Google Play. The apps feature severe weather and emergency alerts, first aid information, and flood, earthquake, tornado and wildfire updates and warnings. Emergency preparedness guidance from the U.S. Department of

National MS Society Upcoming Programs Food for Thought Sheridan, Wy | August 11 Vestibular Rehabilitation for Clinicians Glenwood Springs | August 11 Vestibular Rehabilitation for Clinicians Grand Junction | August 11 Managing MS Through Rehabilitation and Exercise Grand Junction | August 12 Managing Cognitive Symptoms and Fatigue Fort Collins | August 12 A Night with the Switchbacks Colorado Springs | August 24 Managing MS Through Rehabilitation and Exercise Boulder | August 30 Medicare Part D Enrollment Denver | October-November Symptom Management Craig | Fall 2016 Symptom Management Durango | Fall 2016

For more information, check out our online calendar:

COLORADO SPRINGS WILDFIRE Homeland Security is available at ready.gov. Free publications with information specifically for families, seniors and pet owners are available, as well as a step-by-step guide to making an emergency plan and creating a support network. The NationalMSSociety.org has an entire section dedicated to preparing for emergencies on its website. Go to nationalmssociety.org and click on “Living Well with MS.” Then click on “Mobility and Accessibility.” Then click on “Increasing Accessibility.” A link titled “Preparing for Emergencies” will appear in the left hand column, leading to a wealth of information from resources and plans to what should be in an emergency kit.n

Society Scholarships

The National MS Society recently awarded $1,000 scholarships to 5 students in Colorado to help further their educational and career aspirations. The annual scholarship program was established 13 years ago to provide financial assistance to high school students who live with or are affected by MS and are pursuing college or technical school education. The program has significantly grown since the first year when $68,000 was awarded to 36 scholars. This year the Society awarded more than $1.1 million, funding 815 scholars nationwide. The scholarships are funded through the generosity of individual and corporate donors, foundations, and staff and volunteers of the Society. Information about scholarships for 2017-18 will be available October 1, 2016. For more information please visit nationalMSsociety.org/scholarship Congratulations to the Chapter’s Scholarship Recipients: Megan Butterman Fort Lewis College, Durango Katherine Taylor Hastings College, Hastings Nebraska

Tanner Magee Grand Valley High School, Parachute Avery Plantz Arapahoe High School, Centennial

Isaac Gree Manitou Springs High School, Manitou

MS CONNECTION: SUMMER 2016

GIVING

BRIDAL MAGAZINE'S WEDDING SHOWCASE

A special thanks to event coordinator Lilli Black at Sweetly Paired, Felicity Allyse, Astonishing Cakes, Yours Truly Cupcake, Plum Sage Flowers, The Gourmet Kitchen, Candlelight Ambiance, Lighting & Design by Scott, Elite DJ, Stella & Dot, Johnathan Kohlwey Photography and videography by Troy Knechtel, whose contributions supported the special evening.n

BENEFITS THE SOCIETY

When Rebecca Marie founded Novelty Bridal Magazine in 2015, she wanted her publication to showcase photographs of real weddings along with top salon and makeup advice from around the globe. She was also committed to making a difference by supporting a charity each year and in 2016, the Society was the nonprofit organization selected. On May 25, NATIV hotel, located in the heart of Denver’s trendy LoDo district, was the site of a bridal event where attendees were treated to a runway show of couture bridal gowns by The Bridal Collection, Tony Ward, D’Annelli Bridal and Liz Martinez. The gowns were modeled by women living with MS and professional models who were beautified for the

Novelty Bridal Gown from the showcase event by Adorn Salon & Spa. Special guest Lori Spurgeon, who lives with progressive MS, shared her personal story of love, loss and growth with guests. The evening was especially meaningful to Rebecca Marie as her father had lived with MS. “It was so hard seeing him struggle and this is a way to share what I love and also give back to the community by raising funds to support research and aid others living with this disease.” Refreshments, music, dancing and an auction rounded out the event that raised more than $1,500!

WAYS TO GIVE

for hiking and nature in New Mexico with individuals living with MS.

By Kristina Kaltenbach

Almost immediately, people of all different skill levels and abilities began signing up for the hiking excursions offered through On the Move. Geery and Shuryn had originally planned to lead the program for only one year, but ended up guiding four excursions throughout New Mexico over the next three years, offering wheelchairaccessible options and working to accommodate people’s needs whenever possible.

THE HIKING CONNECTION Inspiration emerges from many places and experiences. For Emily Geery and Danielle Shuryn, inspiration came from watching people with multiple sclerosis achieve their personal best as part of On the Move, an innovative connection program they developed with the help of the National MS Society. Both Geery and Shuryn have family members living with MS and for years have ridden on the same Bike MS team, Los Monos Ayudante. As they learned more about MS, they wanted to give more, too. So, with the help of their team and support from the Society, they put together an opportunity to share their passion

During the hikes, the two women enjoyed the frank conversations about the challenges of MS and experiencing how the bonds that the hikers created strengthened their perseverance to keep moving. “It was amazing to see when people were in nature, they felt free to talk openly about their MS and be honest about how they were feeling,” Shuryn says. Both women now call many of the people who joined their hikes

cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

Novelty Bridal Gown from the showcase

HIKING WITH ON THE MOVE friends. Even though On the Move is now coming to a close, they want to encourage people to “keep hiking and exploring, achieving personal goals and having fun.”n Learn more: nationalMSsociety.org or 1-800-344-4876

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

SAN DIEGO: NOVEMBER 4-6, 2016

Once in a while, a challenge calls that you simply must answer. The Southern California Challenge Walk is the perfect way to embrace a personal challenge of spirit and strength, while making an important difference in the lives of people living with MS. Register and s tart fundraising today!