Spring 2014 MS Connection Newsletter

Spring 2014

National Multiple Sclerosis Society

MS Connection Newsletter

Colorado-Wyoming Chapter

Colorado-Wyoming Chapter

SPECIAL WALK MS ISSUE

We're walking to create a world free of MS. INSIDE THIS ISSUE:

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Giving: a Family affair

Research: Myelin Repair

WHY WE WALK

Walk Using Walking Poles

Letter from the president Dear Friends, It is once again time to embrace the changing of seasons and turn our focus to outside activities such as gardening, taking walks and cycling.

We also find ourselves moving away from consuming heavy ‘comfort’ foods to dining on lighter fare. In essence, we start to do things that enhance our health!

MS Connection is published by the Colorado-Wyoming Chapter, National MS Society 900 S. Broadway, Suite 250 Denver, CO 80209 Info: 800 FIGHT MS (344-4867)

Often the mere mention of the words ‘health’ or ‘wellness’ bring a range of thoughts to mind—I should do this, I shouldn’t do that —which can be defeating. This year, think about your health in a different way. We have heard about ‘the power of positive thinking’ and sayings such as ‘change your mind, change your life.’ Try that tactic and direct your thoughts toward doing activities that improve your health because you want to. Deciding that you want to eat better is different than placing yourself on a diet. The same applies to physical activity – make that walk, yoga class or bike ride a time you look forward to and enjoy the experience. This is a subtle shift in thinking, but can help you achieve positive results.

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.

Health is something that should never be taken for granted. No matter what circumstance each of us face, we want to feel as good as possible. Check out the range of beneficial programs and activities the Chapter offers year-round to nurture healthy pursuits.

In May we are holding a series of popular pole walking classes at locations throughout Colorado. While many people use poles for sports strengthening, this activity has also been proven to help people with gait and balance issues. So if you use a walker or a cane, you just might be a candidate for these classes. This is a fun activity, and as a past participant of the class recently shared, “Now I can see the sky, instead of the sidewalk.”

Additionally it’s time to ensure Walk MS is on your calendar. These events are great opportunities to get outside and connect with friends, while at the same time doing something that helps the MS community. I want to thank our long-time supporter Sam’s Club for engaging as the title sponsor of our 13 Walk MS events across Colorado and Wyoming this year. They are an outstanding supporter and partner.

Being mindful of our actions and how we use our time will contribute positively to our health and well being. Take advantage of classes and activities the Chapter offers and invest in your greatest asset. There is never a better time than NOW! Sincerely,

Carrie H. Nolan President

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Newsletter Distribution—If you have a change of address or would like to receive MS Connection electronically, please call 800-344-4867.

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.

Chapter President Carrie H. Nolan Board of Trustees Kyle Ocasek, Chair Brandt Wilkins, Immediate Past Chair Kathryn Spritzer, Secretary Rob Hartnett, Treasurer Alison "Brooke" Allen, MD Carl Berglind Whit Conant John Corboy, MD Claudia Curry Hill Chris Doerr Shauna Giddings Schmitz Marley Hodgson III Carin Knickel Craig Lopez Deborah O’Neil Richard Raymond, MD Travis White Jo Wilson Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage ©2014 National Multiple Sclerosis Society, Colorado-Wyoming Chapter

MS connection: Spring 2014

$30,000 Grant for

IN THE NEWS

Care Management Services Thank you to the Caring for Colorado Foundation, which awarded a $30,000 grant to the chapter. The funding will support the care management program, which helps people living with MS navigate the health care system and connect with needed services. The chapter was among 63 organizations that received $3.1 million in funding, which was designated to support the state’s mental health, oral health and safety net systems.

1-800-FIGHT-MS resources and support for everyone affected by MS

Sundance Stars Show Support SchwiNn Bike Auction OPens May 1, 2014

Carin S. Knickel

has served as a Director for Rosetta Resources, Inc. since July 2012.

She is a member of the Compensation and Nomination Committees. From 2003 until her retirement in May 2012 she served as Vice President, Human Resources of ConocoPhillips, Inc. Elijah Wood

After brushing handlebars with the Sundance Festival’s biggest stars, Schwinn donated a celeb-signed Hollywood cruiser to the National Multiple Sclerosis Society to be auctioned off with proceeds benefitting the Colorado-Wyoming chapter.

Stars of the silver screen—including Elijah Wood and Maggie Gyllenhaal—signed the 2014 Hollywood cruiser at the film festival where Schwinn and Beyond Cinema magazine partnered to host an interview suite at the magazine’s studio during Sundance.

The auction opens Thursday, May 1 and is open to everyone!

Check the website for details on how to bid on this awesome ride! cureMSco-wy.org click Schwinn Auction

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

NEW BOARD MEMBER

Maggie Gyllenhaal

Knickel began her career with Conoco in 1979 as a marketing account manager. Over the next eight years, she held various operating and planning positions before she was named area director of light oil sales, product supply and trading. After serving in Europe as general manager of business development for refining and marketing and then fulfilling the same role for exploration and production, Knickel returned to the United States as general manager of refining, marketing and transportation.

In 2001, she was named president of the company’s specialty businesses division.

She has served as a board member for Colorado Special Olympics and Rebuilding Together – Houston and currently serves on the Engineering Advisory Committee for the College of Engineering, University of Colorado.

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EVENTS

M embe rs

IThe ONChapter NAALLwould SO O Y NNAAT TI O MMSSlikeSto CC II EE TT Y thank the following members for their generous donations made from December 13, 2013– March 21, 2014

Become a Golden Circle Member Golden Circle Members are compassionate donors who provide invaluable assistance to the more than 13,000 people in Colorado and Wyoming affected

by MS. Learn more today:

sophia.conti@nmss.org

LaDari Anderson Bruce and Jenny Arfmann Dorris J. Baker Chuck Bellock John and Carolyn Bliley Dee Blue Angela and Scott Brand James Brophy Helen Castellani Richard and Marsha Cole Estate of Ruth Combs Don Conkle Dr. Steve Cooper Dr. Carl and Ondine Craig Claudia Curry Hill Glenn and Cecilia Curtis Jeffrey Curtis Dr. Robert and Lenore Damrauer Linda Deichsel Alan Delp Chris and Mary Doerr James and Andrea Eckroth Stan and Carol Eilers Darren Fedorowicz Kevin and Susan Fink Anne Foster and Kurt Duldner Donald Fritschie Carlotta Pagone-Gibson and Mike Gibson Sherri and David Giger Margot Gilbert Peggy Goldman Bradley and Melissa Gustafson Helen Hideshima Marley and Jennifer Hodgson Nancy Holden Michael and Twila Jenkins Alison Jones Craig and Cheryl Kane Joseph Kasputys Stephen and Kim Keen Nicole Kim DeeAnna and Edwin Kraft Mark and Ellice Krivel

Nancy Law Dr. Stuart and Arlene Lerman Dr. Ford and Rebecca Lux Dennis Lynch Stephen and Courtney Marsters Chad McAllaster John and Laurie McBride Jackie Meadows Mary Milgrom James and Ellie Mohler Jill and David Myers Marcia Naiman Eric Neeper Rodney Nielsen Bob Peterson Jane Quinette Donna and Joseph Routzon Raymond Satter Shauna and Dan Schmitz Courtney Chapman and Jonathan Shreve Luci Smits Katy and Marc Spritzer Lynette and Bradley Steininger Gary and Teresa Stewart Robert and Celia Stretmater Glenna Swanson Vern Swedin The Rifkin Foundation The Rosemary & David Olsen Foundation The Spritzer Family Fund Bill Turner TWC Foundation Inc Twelve Twenty One Fund Joseph and Linda Vumbaco Kay Wagner Wet Paint Communications, LLC Amy and Erick Whittier Brandt Wilkins and David Alexander Ann Myers Williams and Bob Williams Jo Wilson Nancy and Mark Wood Shelby and Sybil Yastrow Chris Younger

*Golden Circle members are individuals who gave a one-time gift of $1,000 or more

Independent Spirit Fund

Giving the Gift of Independence You can help change a life by making a gift to the Independent Spirit Fund.

the

Independent Spirit Fund Independence for People living with MS

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The ability to go about daily functions such as walking, driving, and even communicating are often taken for granted. For someone living with MS, these tasks can be frustrating and challenging, and possibly impact the precious ability to remain independent.

The Independent Spirit Fund (ISF) was established to assist people with MS with issues related to mobility MS connection: Spring 2014

GIVING

Making Giving a Family Affair Family finances can be a touchy topic, but coming together as a unit to discuss how to use resources to help others though charitable giving can be a beneficial way to establish healthy financial communication skills that last a lifetime.

Most people have experienced the special feeling of joy or happiness resulting from providing resources to help others. Sharing a story of this nature with family members is a good starting point for creating family philanthropy discussions and planning.

Let each member react to your story and then ask what is important to them and why.

Next, establish a family philanthropy goal and let everyone have a voice regarding how the resources will be used to make the world a better place.

The size or scale of the giving doesn’t matter; it’s establishing a comfortable forum for all members to discuss the financial gift that sets the stage for ongoing dialogue, planning and action.

A birthday or holiday is an ideal time to start a philanthropic conversation.

Begin by communicating that one and independence. Your gift to the ISF can make a significant impact by helping to adapt a vehicle, evaluate and modify a home, build a ramp for home access, provide technology such as voice recognition software to support the ability to communicate, or acquire medical equipment, which was the case with Dr. Michael Hart.

As the personable owner of a chiropractic office in a Colorado mountain town, Michael Hart, D.C., is a trusted care provider and valued neighbor in his community. However, his MS symptoms began to threaten his ability to care for his patients. Due to his drop-foot, he began to stumble around his exam table

present will be a “pay it forward” gift.

Children grasp this concept easily and what you learn about those closest to you may be surprising. Years later, when the material gifts are a long lost memories, everyone will remember:

Collective memories are powerful and family philanthropy can naturally evolve, creating a comfortable course for other financial discussions, involving charitable legacy gifts and other estate planning decisions as family members age.

• Giving the gift of food so a needy family could eat.

Giving is a tie that binds. Engaging in philanthropy as a family is meaningful, fun and provides countless rewards. n

• Donating a piano to lift spirits of the elderly at a nursing home.

• Providing books to children who had none.

• Supporting the well that provided clean water for a community across the globe.

• Getting up early and dressing in matching T-shirts to walk or ride with family members and friends to support someone living with MS. and equipment and he worried that this troublesome symptom would cause his patients to lose confidence in him, and ultimately even end his career.

Since relying on equipment such as canes or walkers was not possible with the hands-on nature of his practice, pursuing a walking aid was an obvious choice. Dr. Hart worked with Bioness to secure a refurbished unit to help and approached the chapter with a request for financial assistance. A care manager assisted him with applying to various funding agencies, filling out paperwork and providing needed documentation. In the end, Dr. Hart was able to secure funding for the entire cost of the refurbished unit

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

We Honor Your Giving Your gift will help fund cutting-edge research, drive change through advocacy, facilitate professional education, and provide programs and services to help people with MS move their lives forward. Make a donation online:

cureMSco-wy.org through generous contributions from the Independent Spirit Fund and another nonprofit organization. The Bioness helps Dr. Hart work with confidence without frequently stumbling. More significantly, this device represents a renewed sense of pride and dignity at being able to continue to thrive as a chiropractic doctor and provider for his family. This is an inspirational example of the Independent Spirit fund at work.

To learn more or to make your gift please contact: sophia.conti@nmss.org

303-698-5434

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RESEARCH New Research

Lifestyle & Wellness Exercise and Memory One of the National MS Society’s priorities is to drive research on wellness and lifestyle, where advancements could make a difference in the quality of life for people living with multiple sclerosis.

These studies are also offering clues to risk factors that could help determine who is more likely to develop MS, which could lead to preventive strategies to end MS forever.

Aerobic exercise has been shown to increase the volume of an area of the brain associated with memory, called the hippocampus, so Victoria Leavitt, PhD, of the Kessler Foundation Research Center in West Orange, N.J., and her colleagues conducted a small pilot study to determine the effects of aerobic exercise on two people with MS who experienced memory impairment.

One person was randomly assigned to an aerobic exercise program involving stationery cycling, and the other was assigned to a non-aerobic exercise program of stretching. Each program consisted of three 30-minute sessions per week for 12 weeks. Before and after the program, MRI images were taken to assess the size of the hippocampus; functional MRI images were taken to assess real-time brain activity; and memory assessments were also conducted.

The researchers found that aerobic exercise resulted in a 16.5% increase in hippocampal volume, a 53.7% increase in memory and a significant increase in hippocampal activity. No significant changes occurred in the person doing non-aerobic exercise.

(Neurocase, published online October 4, 2013). These preliminary results need further confirmation, but are in line with an emerging body of evidence showcasing the potential of exercise to provide broad benefits for people with MS. The Society is funding several studies exploring the potential benefits of exercise, including a trial of aerobic exercise as a strategy to treat cognitive dysfunction.

Fatty Fish and MS Fatty fish, such as herring, mackerel, tuna, salmon and trout, are a major source of vitamin D, which has been associated with decreased MS risk. Maria Bäärnhielm, PhD, and colleagues from the Karolinska Institutet in Stockholm studied whether fatty fish intake was associated with whether or not a person develops MS. They looked at a sample of 1,879 people with MS and 4,135 people without the disease; both groups had answered questionnaires as part of the Epidemiological Investigation of MS, a study comprising Swedish-speaking

subjects between ages 16 and 70 from certain areas of Sweden.

The team analyzed survey answers concerning fatty and/or lean fish intake, sun exposure and other factors, as well as blood samples to analyze vitamin D levels. They found that frequent fatty fish intake was associated with decreased occurrence of MS and that no significant association was found between intake of lean fish and MS. Among 1,178 people with MS and 1,410 without MS for whom blood samples were available, vitamin D levels were higher in those with high fatty fish intake. This work was supported by the Swedish Medical Research Council and other agencies (Multiple Sclerosis Journal, published online October 24, 2013).

This study adds to the growing body of research suggesting the possible benefits of vitamin D for people with MS and the role of vitamin D in lowering risk of developing MS. A Society-funded clinical trial of vitamin D supplementation is ongoing in people with relapsing-remitting MS.

Read more about vitamin D

nationalMSsociety.org /vitaminD

Our Vision is a World Free of MS. We are a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever.

Visit the Society website for research news and progress, information about the research we are funding, research studies, trial opportunities and more!

nationalMSsociety.org/research 6

MS connection: Spring 2014

RESEARCH The Promise of

Myelin Repair

by Bruce Bebo, PhD

When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off destructive immune attacks, which resulted in immune-based therapies that can help control relapsing forms of the disease for many people.

chronic lesions in the gray matter show robust remyelination – even in people living with MS into their 70s. This opens up opportunities to compare differences in the two regions and figure out how to make white matter repair itself like gray matter.

While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to finding strategies that stop MS progression and repair the damage that causes disability. This is relevant to people with all types of MS, but especially to people with progressive forms of the disease.

Dream to Reality People are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This would be important for restoring function, and many believe that re-establishing the protective myelin coating on axons may even shield them from further harm.

Bruce Trapp, PhD, and his team at the Cleveland Clinic have been working hard to advance the field of nervous system repair. They have shown that new MS lesions undergo natural repair much better than older (“chronic”) ones. They also reported that the problem is not a lack of cells capable of making new myelin in old lesions, but their inability to produce new myelin.

Work is now underway to figure out what the impediment is and how to jump-start the repair process.

What makes this work on MS lesions intriguing is that it straddles two different parts of the brain – the socalled white matter and gray matter.

The team found that chronic lesions in the white matter don’t remyelinate. But

In related research, Larry Sherman, PhD, and colleagues at the Oregon Health & Science University found that fragments of a molecule called hyaluronic acid (HA for short) accumulate in chronic white matter lesions and could be at least partially responsible for the stalled remyelination.

They have identified an enzyme that chews the HA into fragments and have shown that inhibitors of this enzyme promote remyelination. They are now trying to figure out exactly how this works, in hopes of developing treatments that promote remyelination.

More Possibilities Increasing evidence suggests that female sex hormones might be neuroprotective and/or promote repair of myelin. I saw two very interesting presentations last October at ECTRIMS, the world’s largest gathering of researchers, which reported that different estrogen-like molecules could stimulate production of new myelin.

Both of these projects are supported by the Society.

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

Another strategy to repair myelin in MS is to introduce new repair cells into the system via transplantation. Of note was a presentation by investigators from Milan, Italy, who used mouse skin stem cells and forced them to become myelin-making cells. After these cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE. The team found that these cells didn’t actually make myelin themselves, and are starting to identify the growth factors they release that stimulate natural repair and also reduce inflammation. More work is needed, but this type of research gives hope that this strategy may eventually help restore lost function.

Updates on two repair therapies already being tested in human clinical trials were also presented. The first is called anti-LINGO. LINGO is seen in neurons and myelin-producing oligodendrocytes, and blockading this protein with anti-LINGO has been shown to promote remyelination in animal models. An investigative team from Biogen Idec reported that antiLINGO was well tolerated in people and that no negative effects were seen.

This means the company will likely keep pursuing clinical development of this promising repair candidate.

In other news, investigators from the Mayo Clinic are developing an agent called rHIgM22 that has been shown to promote extensive remyelination in several different animal models of MS. This agent is now in early clinical trial testing in MS. We’re not there yet, but recent and ongoing research holds the promise of uncovering new targets for stopping progression and stimulating repair.

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RESEARCH EVENTS

Wyoming Veteran Battles Another Enemy—MS The family history was there – Ret. Army Captain Derrick Dietz’ grandmother, mother, aunt, cousin and one of his sisters had each been diagnosed with MS. In fact, his grandfather Patrick Shafer started the first MS Society Chapter in Casper in the 1950s following the diagnosis of his wife Carolyn. But in 2009, when 44-year-old Dietz began to experience vision disturbances and unexplained numbness during his second deployment to Iraq, he never suspected he was also fighting an enemy within – MS.

walkMSco-wy.org

#walkMScowy 2014 Walk MS Dates

April 26, 2014 Cheyenne

May 3, 2014 Denver Grand Junction

May 10, 2014 Northern Colorado Pueblo Casper

May 17, 2014 Rock Springs Boulder Colorado Springs Glenwood Springs

June 7, 2014 Cody

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Dietz was a retired Casper police officer and Army reservist serving as a Reserve Unit Company Commander when he was activated for service. Despite the symptoms that surfaced while serving in Iraq, he soldiered through. It was during his third tour of duty stateside that Army physicians ordered an MRI, which led to his diagnosis. “MS never crossed my mind,” said Dietz, “I knew something neurological was going on, but I thought I was well past the age for getting MS. I found out I wasn’t.”

Like the call to service that had changed his career path earlier, the diagnosis of MS ended the military career he had planned. The father of two found himself having to rethink what was next after being discharged from service due to disability. He found a new purpose and a unique way to stay connected to military personnel

by volunteering with a very special nonprofit organization.

One of our Wyoming program managers affirmed his commitment to making a difference. “If we need something for the Chapter, he’s always willing to help.

He is just an all-round great guy, with a great outlook. He comes from a strong family and despite being targeted by this disease, they don’t let MS hold them back."

Dietz is one of more than 1,000 people living with MS in Wyoming, who fight MS daily. Community members can show their support by participating in Walk MS Casper which takes place Saturday, May 10 at Yellowstone Garage. n

REGISTER TODAY!

Why_____Walks I was diagnosed with MS in April of 2007.

I connected with the Society almost right away because I had no health insurance, at the time, and wanted to find out what options might be available for someone in my situation.

After seven years of living with multiple sclerosis I have faced more challenges MS connection: Spring 2014

EVENTS

for my

by Kaylin Daniels, Chapter Staff Member

MS And Military Service • More than 23,000 veterans with MS receive care through the Veterans Health Administration.

• According to a 2003 study in the Annals of Neurology, 5,345 veterans that served in Vietnam and the first Gulf War were diagnosed with MS that was deemed "service-connected."

• The relative risk for developing MS also was significantly higher for this group of veterans than those who served in World War II and the Korean War. • An advisory committee commissioned by the Veteran’s Administration recently recommended further study into the potential link between combat service and increased risk of developing MS.

than I can count. It is so hard to balance quality of life with the down time my body so urgently needs. I often feel very frustrated with not being in control of my own body and being perceived, by others, as my disability when I am so much more than that!

The National MS Society has helped me in more ways than one; giving me financial assistance when I needed it most, a grant that allowed me to

My dad has had multiple sclerosis for as long as I can remember but he is much more than his MS. Ralph Downour is the patriarch of a family with seven children, 11 grandchildren, and one great-grandchild. He is a lineman for the electric company and plays softball competitively.

He wears jeans with holes in them because they’re more comfortable than any of the new clothes we buy him. He rides his bike to work, enjoys hunting with his brothers and sons, builds and fixes things and tinkers around in the garage for hours.

He is independent and refuses to ask for help. He loves the Detroit Tigers and attends the same church he was born into where he has been the maintenance man since he was old enough to shovel snow and sweep floors. He is a brother, son, husband, father, grandfather, and great-grandfather and makes the best malts and cookies in the whole world. He loves to get lost in a good spy novel and taught me how to hold my breath underwater and ride my bike.

At heart, my dad is all of these things and more but in reality, MS has taken much of that away from him. He no longer plays softball, rides a bike, or climbs telephone poles for work. He can’t play catch, mow the lawn, or work as the maintenance man at his church.

Despite what MS has taken from my dad he still is and does many things, just differently. When he travels, he uses a wheelchair to get around the airport. He gets dropped off at his tree-stand rather than hiking to his favorite hunting spot. He still tinkers around in his garage but not for hours on end or in the heat of the summer. Now he has to calculate every step because he can’t move his body freely anymore.

Kaylin walking down the aisle with her father and mother.

MS has taken a lot from my dad but he is still the same wonderful father he always was; encouraging his children to reach for the stars and making a fresh batch of cookies when we’re going to be in town. And, thankfully, MS did not move fast enough to rob us of a walk down a sandy beach aisle at my wedding.

I walk for all of the things my dad is and does. I walk for my wonderful father, my hero and the strongest person I know.

purchase a scooter and regain some independence and mobility and opportunities to give back through volunteering and Walk MS. The Walk has meant a lot to me over the years. At first it was my coming to terms with my diagnosis, but over the years it has turned into an opportunity to share my story, meet others and raise money for a cause that has had such a huge impact on my life!

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

I know I have the MS community around me and that the National MS Society will be there to help me when I need them.

Read more of Elena's story and share why you walk with us!

walkMSco-wy.org click Why We Walk

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EVENTS MS Run the US

Beating a Path to End MS

May, following a mountain route from Nephi to Vernal, Utah. Training itself is a challenge—she runs 90 miles a week to prepare to the event.

Board Certified Music Therapist Kaitlyn Morgan vividly recalls the day in 2010 when her father called to tell her he had been diagnosed with MS. “I remember being totally surprised since there was no history of MS in our family,” Kaitlyn said.

“The relay seemed like an ideal way to raise awareness and funds that will help my dad and others living with MS,” Kaitlyn said. Each member of the relay team will raise $10,000. The $160,000 the event will raise will be donated to the National MS Society to further research and provide resources and support to people affected by the disease.

“I’ve wanted to do whatever I could to help find a cure for MS and when I learned about the MS Run the US on Facebook, I had to do it,” she said.

Kaitlyn will be one of 16 runners participating in the 3,000-mile transcontinental relay that spans four months, beginning in Los Angeles and ending in New York City. She will run a 180-mile leg over six days in mid-

Wisconsin native Ashley Kumlien founded the transcontinental event in 2010 in honor of her mother Jill, who had been living with MS since 1980.

That year Ashley journeyed more than 3,200 miles solo, taking a route from San Francisco to New York City. It took her six months and ten pairs of shoes as she ran nearly a marathon a day, six days a week.

“My dad is doing pretty well and is still independent, but fatigue can get the best of him,” Kaitlyn said. Although the computer software engineer doesn’t work now, he stays involved and is keenly supportive of his daughter, calculating distances, altitude and other statistics related to her upcoming run. n

MSruntheUS.com

New Location!

Keystone Resort Change your altitude about multiple sclerosis.

July 26, 2O14

Join us on Saturday, July 26 as we hike our way to a cure for MS in the beautiful Rocky Mountains.

With well-supported hike routes varying from two to ten miles, there's a route for the whole family and we'll be there every step of the way Your registration fee includes a custom tech T-shirt, 2 meals and on-course snacks, rest stops, route support, maps, entertainment and more.

hikeMS.com 10

REGISTER TODAY! MS connection: Spring 2014

EVENTS

Nutrition and

Hydration AT Bike MS

By Lucas M. Clarke Director of Marketing for MAD Greens and Avid Elite Level Cyclist

The key to riding Bike MS and feeling great is remembering to fuel yourself properly with good food and lots of hydration. Here are some tips to remember for riding Bike MS: Enjoy the Meal Before Saturday Morning. Eat aggressively the night before so your muscles are crammed with glycogen the next morning. Emphasize carbohydrates such as pasta, vegetables, bread, whole grains, and fruit. Don’t forget dessert!

Don’t Skip Breakfast. Cycling’s smooth pedaling motion means you can eat just before a long ride without risking stomach upset, unlike preparing for a 5k or 10k run. Cycling consumes about 40 calories per mile, or 4,000 calories in a century ride. 2-3 hours before the start, eat about 60 grams of carbohydrate if you’re an average-sized woman, 80 to 100 if you’re a man. (Cereal, skim milk, a banana, and a bagel with jam is about 90 grams of carb.) Many riders find that adding some protein and fat, like scrambled eggs or an omelet, keeps their stomach satisfied longer.

Prehydrate. Fluids are as important as food. Drink at least eight big glasses of water the day before the ride. If you don’t, your performance and comfort may plummet by mile 50. During the hour before the ride, sip 16 ounces of a sports drink.

Eat and Drink During the Ride. Drink before you feel thirsty. Your sensation of thirst lags behind your need for liquid, so grab your bottle every 15 minutes and take a couple of big swallow (about four ounces). About every 30 minutes, eat 20 grams of carbohydrate—the equivalent of half an energy bar, several fig bars or half a banana. Some riders prefer to eat smaller portions more frequently.

Enjoy the ride and have fun!

CO:

June 28-29

WY:

Aug. 16-17

bikeMScolorado.org bikeMSwyoming.org

LIVE a HIGHER

Mark your calendars!

quality oF liFE Comprehensive Rehabilitation for Multiple Sclerosis At HealthSouth Rehabilitation Hospital of Denver, our multiple sclerosis (MS)

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program is designed to help people

presented by

living with this complex disease.

Through comprehensive inpatient rehabilitative care, our expert teams

SEPT

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focus on individual needs to help patients reach personalized goals.

cureMSco-wy.org

We can even admit patients directly from home to our hospital for a short stay to help patients return home with increased independence. Patients receive three hours of therapy five days a week, along with frequent visits by a physician*. *HealthSouth provides access to independent private practice physicians, specializing in physical medicine and rehabilitation.

Services may include: • Daily living skill strategies and adaptations • Development of home exercise and symptom management program • Energy conservation training

SEPT

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• Therapies to improve range of motion, balance, strength and flexibility

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

For more information or to make a referral, call 303 334-1111.

A Higher Level of Care®

1001 W. Mineral Ave. • Littleton, CO 80120 303 334-1111 • Fax 866 291-5251 • www.healthsouthdenver.com

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ADVOCACY Driving Public Policy

Advocacy in Action

MS Activists nationwide took to Capitol Hill in Washington D.C. the week of March 17 during the Society’s Public Policy Conference. Throughout the week Congressional leaders were urged to commit funding to support agencies involved in MS research, clinical development and review processes; support the Access to Quality Complex Rehabilitation Technology Act; and join the Congressional MS Caucus.

The Society regards NIH as a vital partner in MS research for finding a treatment for progressive MS, additional therapies for relapsing MS and a potential cure. Advocates requested that Congress allocate at least $34 billion FY2015 to support the work of the NIH. Society members also advocated for robust funding of the FDA to accelerate approval of new drug therapies.

Complex rehab technology (CRT) refers to medically necessary products, such as individually configured manual and power wheelchairs. If passed, the Access to Quality Complex Rehabilitation Technology Act would create a separate benefit category under Medicare for CRT, protecting access to these customized products. The legislation

From left: Sherry Perry, Lisa Custy, Eric Hilty

would also enhance quality standards by requiring CRT suppliers to be accredited by an independent organization and have qualified staff to service and repair CRT products.

Members of the Congressional MS Caucus seek creative policy solutions for the challenges facing people living with MS and their families, covering areas such as MS research, access to quality healthcare, long-term services, employments issues and disability rights. The caucus is co-chaired by Reps.

Michael Burgess, MD (TX-26), Chris Van Hollen (MD-8) and Sen. Robert Casey (PA). Members of our local delegation who are members of the MS Caucus include Sen. Mike Enzi (WY) and Rep. Cynthia Lummis (WY) and Reps. Diana DeGette, Ed Perlmutter, Mike Coffman and Cory Gardner (CO).

“The Society’s Public Policy Conference provides a forum for us to actively

educate policy makers about MS and its impact on constituents,” said Sharon O’Hara, chapter executive vice president. “This is important face-to-face time, but it doesn’t end there. Advocacy is a year round endeavor at local, state and national levels. We constantly monitor issues and related legislation to ensure the MS community is heard and that actions taken will have a positive impact,” O’Hara added.

On the home front, Chapter MS Activists Sheryl Goodman, Allie Moore, Alison Jones recently met with Rep. Mike Coffman to discuss issues impacting the MS community. Thanks to their efforts Rep. Coffman is now a supporter of the CRT bill.

Interested in public policy? Become an MS Advocate. Learn more:

matthew.pfeifer@nmss.org Matt Pfeifer Public Policy Coordinator

CMEP Applications Due May 1!

The NEW Colorado Medical Exemption Program (CMEP) excludes people with disabilities who have heat sensitivty issues from the rate hikes in summer helping to keep energy costs from sky-rocketing.

Questions? Call Caitlin Westerson

303-698-5409 MS Day at the Capitol 2014 Denver Colorado

12 Tracey, diagnosed in 2005

MS connection: Spring 2014

RESEARCH

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Take the heat off your budget this summer!

Xcel Energy offers a discounted summer energy rate, through the Colorado Medical Exemption Program (CMEP), to qualified, customer households with medical needs.

CMEP is an energy assistance program available in communities where Xcel Energy electric service is available. Through this partnership, we are here to help you manage your energy budget during the hottest time of the year. Find out how, together, we can help you stay cool and comfy all summer.

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

3/25/14 9:16 AM

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RESOURCES Using Walking Poles

Walk This Way Walking poles offer increased balance, improved steadiness, support and confidence, while reducing stress on the lower body and decreasing fatigue.

Health and Wellness Making the right choices and finding accurate education and information to manage our health and wellness can be challenging! We can help.

Get prepared for the warm weather which is just around the corner. Check out Cool It! at cureMSco-wy.org and beat the heat with strategies for easing the effects of heat on MS related symptoms. Visit the Mission tent at Walk MS to speak to our knowledgable staff and try out some of the cooling products available.

MS Navigators are available through our Information Resource Center, Monday - Friday, 7AM - 5PM (MST) with information about cooling products and other resources and support to help you live your best life.

1-800-FIGHT-MS

Walking poles are adjustable in length and made of very light metal like titanium, carbon fiber or aluminum.

They have handles, called grips and often feature adjustable wrist straps.

They are designed for walking on flat, steep or rugged terrain. These poles are designed for use in pairs and lie between a cane and a walker on the continuum of assistive devices. Studies suggest that poles reduce the force on joints and help distribute the body’s weight better, meaning less work for the legs, knees, feet, hip and back. Less stress on the lower body translates into

less fatigue, a frequent symptom of MS “If you use poles instead of a cane, you may conserve energy,” according to Jayah Faye Paley, mobility coach and “You can learn to walk with more fluidity and a natural pattern because you recruit and strengthen the muscles that support and lengthen your spine.”

Other benefits are confidence and focus; walking poles are consistent reminders to move better.

It is important to talk to your doctor or physical therapist before trying any new physical activity such as walking poles. If you decide walking poles may be a good match for you, sign up for one our chapter’s Walking Poles classes in your community. n

Walking Poles Classes in your community Colorado Springs

Grand Junction

May 5, 12, 19, 27 11:30am-12:30pm Memorial Park

April 24 and May 1 Sherwood Park 10:30 -11:30am

Denver- Lakewood

Glenwood Springs

May 20, 22, 27, 29 6 - 7pm Crown Hill Park

Sayre Park May 22 and May 29 11am – noon

Loveland May 20, 22, 27, 29 6 - 7pm North Lake Park

Walking poles will be provided for attendees, refreshments also provided. Space is limited.

RSVP today! 1-800-344-4867 option 1

Visit our resources and support page for programs in your area:

cureMSco-wy.org

Yoga in Denver Free MS seated Yoga class at Washington Park Recreation Center, 701 S. Franklin St. Denver, every Wednesday, 10 -11:30am. Improve strength, flexibility and stamina through gentle stretching, modified Yoga poses and breath. Facilitated by Certified Yoga Instructor, Katie R. and Adaptive Yoga Instructor, retired nurse living with MS, Pam V.

For more information call Pam at 720-498-6376

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MS connection: Spring 2014

RESOURCES

Helping Young People With MS Lexi Chavez was a typical 15-year-old when she began sleeping a lot, lost her appetite and experienced episodes of slurred speech. The major headaches that folowed prompted her mother to insist on a visit to the ER. That trip proved to be a life changing when an MRI revealed three lesions on her brain and the very unexpected diagnosis of MS. “I really don’t remember much about that time,” said Lexi, now 20 and a psychology major attending the University of Colorado at Denver. “I’d never heard of MS and didn’t know what it was. Actually, my family reacted to the diagnosis more than I did and started treating me like I was on my deathbed.

That felt strange, but MS was new to my family and no one knew how to deal with it,” she said.

“I found some local programs offered by the MS Society and signed up for Walk MS. I also went to a support group, but it was mostly older people and I wanted to talk with people my age. Then I found a camp in California for teens with MS." The camp experience left a strong impression and Lexi decided she wanted to connect with other young people living with MS in Colorado. Chapter staff provided peer support training and Lexi is now lending an understanding ear and guidance to a 14-year-old recently diagnosed. “Being able to talk with people around the same age who are going through similar challenges is important. Next I would like to start a support group for young people in Denver,” she added.

busy lifestyle, being able to take an oral medication is a welcome option.

“I plan to volunteer for the Denver Walk and have my first team in Walk MS Pueblo this year. My middle name is Raye, so I’m naming my team “A Raye of Sunshine.” An appropriate name for someone committed to bringing light into the lives of other young people sharing the common bond of MS. n

Today her family has a much better understanding of MS and is very supportive. After several years of trying different medications, she is doing well on Tecfidera. For a student with a

OF NOTE

Meet our newest staff Sarah Ness

Volunteer Manager Denver Office Anna Heffern Database Associate Denver Office

Suzanne Reel Community Outreach Coordinator Grand Junction Office

Colorado's Rising Star Congratulations to our own Chelsea Hixson, Southern Colorado Community Outreach Manager who was honored by the Colorado Springs Business Journal as one of Colorado Spring’s Rising Stars.

Rising Stars are those in the local community 40 and younger who have made significant strides in their careers and who have given back to the community through their dedication to volunteerism and charity.

For more information on the Rising Star Program in Colorado Springs visit: csbj.com/2014-rising-stars/

Stacy Richardson

Community Engagement Manager Cheyenne Office Anna Russo Development Coordinator Ft. Collins Office cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

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Broadway Station 900 S. Broadway, Ste. 250 Denver, CO 80209

Stay Connected

cureMSco-wy.org 1-800-FIGHT-MS (344-4867) Visit any Participating Neighborhood Toyota Store and Raise Money Toward Your Bike and Walk Fundraising Total!

Help the National MS Society Colorado-Wyoming Chapter raise $25,000 dollars with the help of your Neighborhood Toyota Stores!

Walk MS Details* Visit any participating Toyota Dealership from April 1 to May 2 to pick up your Toyota Walk MS wristband.

Your Neighborhood Toyota Stores will donate $50 per person for the first 200 Walk MS participants to show their wristband at the Toyota booth at Denver Walk MS on Saturday, May 3.

Bike MS Details* Be among the first 200 riders to drop off your 2014 Bike MS Participant wristband at any participating Toyota Dealership between June 30, 2014 and August 2, 2014 and receive $75 credit toward your fundraising total.

No purchase necessary. To qualify participants must be registered for Denver Walk MS. $50 credit will be applied to Walkers' *fundraising total. Fundraising totals will be updated online by July 15, 2014. Limit one $50 Toyota credit per household.

No purchase necessary. To qualify participants must be registered for Bike MS Colorado. $75 credit cannot be applied to the $400 *fundraising minimum. Limit of 1 credit per household.

Larry H. Miller Boulder Toyota

Mountain States Toyota Stevinson Toyota West

YOUR NEIGHBORHOOD TOYOTA STORES

Stevinson Toyota East

Groove Toyota on Broadway AutoNation Toyota Arapahoe

toyota.com www.TOYOTA.com