Summer 2015 MS Connection Newsletter

SUMMER 2015

National Multiple Sclerosis Society

MS CONNECTION Colorado-Wyoming Chapter

Colorado-Wyoming Chapter Newsletter

BIKE MS COLORADO RECAP

8-9 INSIDE THIS ISSUE:

3

5

12

14

ADA 25TH ANNIVERSARY

POWER OF CONNECTION

PROGRESSIVE MS ALLIANCE

MS AND NUTRITION

Letter From the President Dear Friends: As we have walked, mucked and biked through our 2015 outdoor event fundraising season, everyone at the Chapter is filled with gratitude for the outpouring of support we have again experienced this year.

Since April we have held fun and successful events throughout Colorado and Wyoming to heighten public awareness of MS and raise vital funds to end its impact forever. While these objectives are crucial, it should not be lost that these events also serve another essential purpose – they are important points of connection.

Did you know that nearly 70 percent of our new Team Captains are people newly diagnosed and most have their first connection with the Society through a Walk MS event? That is a staggering percentage, but is not surprising as our Walks offer the chance for individuals and families just learning about MS to talk to staff and others about this disease in a comfortable setting and surrounded by hundreds or thousands of supporters.

It is also important to remember that the Chapter plays many roles—including being a year-round resource! If you are not sure where to turn for information, resources or solutions, contact us. Whether you are newly diagnosed or are experiencing changes that call for added support to maintain your independence, we are here to provide knowledge that will empower you. Through the Chapter you have access to our expertise and professional staff. You may not even know what questions to ask – but our staff does and can connect you to tools and resources so you can lead the best and most empowered

2

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

life possible. We can help navigate the health system, provide guidance on accessing disability, educate caregivers, conduct evaluations and connect you to resources for home or vehicle modifications, and much more. You don’t have to go it alone.

If you or someone you know has MS—Studies show that early and ongoing treatment with an FDAapproved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional, or contact the National Multiple Sclerosis Society (NMSS) to learn about ways to help manage multiple sclerosis and about the current research that may one day reveal a cure.

During the 30th Bike MS Colorado, we took time to reflect on the momentous progress that has been made since the first ride. We would not have 12 FDA-approved therapies available today without the leadership and commitment of thousands of people participating at events, advocating and keeping MS in front of the public daily. This isn’t done alone; it takes advocates and champions.

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.

I encourage each of you to be an MS champion and a connector every day. Reach out, learn about resources available and take every opportunity – no matter how large or small – to grow connections. You fuel the momentum that leads to progress and the solutions that will one day end MS forever. And if you have thoughts or suggestions to increase awareness, I’d love to hear from you.

Sincerely,

Carrie H. Nolan Carrie.Nolan@nmss.org 900 S. Broadway Suite 250 Denver, CO 80209

©2015 National Multiple Sclerosis Society, Colorado-Wyoming Chapter Chapter President Carrie H. Nolan Board of Trustees Kyle Ocasek, Chair Travis White, Chair Elect Brandt Wilkins, Immediate Past Chair Kathryn Spritzer, Secretary Jason Sibley, Treasurer Brooke Allen, MD Carl Berglind Whit Conant John Corboy, MD Chris Doerr Rob Hartnett Marley Hodgson III Darrin Johnson Carin Knickel Deborah O’Neil Michael Pierce Richard Raymond, MD Shauna Giddings Schmitz Jo Wilson Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage

MS CONNECTION: SUMMER 2015

IN THE NEWS EVENTS COLORADO-WYOMING

1990-2015

The Annual Meeting is an opportunity to vote on the 2016 slate of Board of Trustees, learn about the Chapter's progress in 2015 and our vision for the future.

Americans with Disabilities Act

2015 ANNUAL MEETING

Nominations for Board of Trustees Being Accepted If you or someone you know would like to be considered as a candidate for the Chapter’s Board of Trustees, send a letter of interest to: MS. Carla Smart National MS Society Colorado-Wyoming Chapter 900 S Broadway, Suite 250 • Denver, CO 80209

You may also e-mail your letter to carla.smart@nmss.org. Please use subject line “Nomination for Board of Trustees." All letters must be received by September 1, 2015.

YOUR GIFT

M A K E S A N I M PA C T Donors who demonstrate their passionate commitment to achieve a world free of multiple sclerosis through an annual gift of $1,000 or more are members of the Golden Circle.

• Special access to local and national leadership events, conference calls and webinars focusing on progress in MS research and the MS movement

A SMEMBER: N A T IBECOME ONAL M SOCIETY

• Connections to other Golden Circle members who share a passion for creating a world free of MS

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

On July 26, 2015, the Society joined forces with disability advocates across the country to recommit to the progress made by the Americans with Disabilities Act (ADA) on the anniversary of its signing 25 years ago.

The ADA — which became law in July 1990 — is the first comprehensive legislation passed by any country in the world to prohibit discrimination on the basis of disability. The ADA guarantees full participation in American society for all people with disabilities just as the Civil Rights Act of 1964 guaranteed the rights of all people regardless of race, sex, national origin or religion. And there are other federal, state and local laws that also protect people who are disabled.

The ADA covers almost everyone with MS. It doesn’t only apply to people who use wheelchairs.

It covers every person with an impairment that substantially limits one or more major life activities.

Over the past 25 years the ADA has reduced barriers for people living with disabilities and allowed people affected by MS to live their best lives. However, there’s still room to grow!

Golden Circle members stay connected to the impact of their gifts through:

• Breaking MS news alerts

ADA 25

cureMSco-wy.org

Learn more about how you can become an MS activist at nationalMSsociety.org/ advocacy

3

RESOURCES

LIVING WITH MS

Relationships and MS Psychologist Dr. Peggy Crawford discusses relationships and multiple sclerosis. Dr. Crawford has worked with people with MS and their families for 25 years.

?

What’s the greatest challenge that couples living with MS face when it comes to intimacy?

I think that the primary challenge is communication. When people aren’t talking to each other, they can make a lot of assumptions about what the other person is thinking or feeling.

This can become a major obstacle that impacts physical, emotional, and sexual intimacy.

Sometimes issues have to do with how people are communicating.

Couples also express themselves to each other through body language and actions. These can include spending less time with each other or negative facial expressions.

Nonverbal communication can make you feel like you’re not communicating much, when in fact you are communicating a lot.

?

Do you have any advice for overcoming communication barriers?

One of the things people can do is clarify why there isn’t more or better communication. I’ve worked with couples where the support partner avoids talking about changes in their relationship that are due to MS because the person with MS may become distressed. Sometimes it takes professional assistance to get that communication up and going again.

It can also be helpful for people to share any assumptions that they’ve

4

Q&A

with Dr. Peggy Crawford

made about why they are not communicating and why they are not intimate.

I remember a couple who had been married almost 30 years who came to see me. It was clear that they cared about each other, but they hadn’t been physically intimate for years.

or enough information about MS. Many times people don’t even realize sexual symptoms may be related to their MS. And sometimes even healthcare professionals are embarrassed to bring it up. (To learn more, visit nationalMSsociety.org/intimacy.)

I asked each of them why they thought they weren’t intimate. And would they like to be intimate again? “Absolutely,” both of them said. It turned out that each of them were very sure why they were not initiating intimacy.

Sometimes couples just have very different coping and communication styles. Some people want to know everything about MS. Other people would rather not know all the details.

Some people cope by talking about things out loud. Other people are more the silent types. These are characteristics that couples bring to MS, not characteristics that MS brings to couples. So, if you already have differences, MS doesn’t necessarily make them better. On the other hand, some couples say that MS was the kick in the butt they needed to address their communication and relationship issues.

The woman, who had MS, said, “It’s because I’m sure he is no longer attracted to me. I’ve had to take steroids that have caused me to gain weight. I don’t initiate intimacy because I just don’t think it’s going to work. I just don’t think he is going to want to have sex.”

The man said, “I don’t even hug and kiss you anymore because I’m so worried that is going to lead to sex, and I know you get those spasms in your legs, and your legs are stiff, and then it hurts you, and the last thing I want to do is cause you pain.”

They went from being tearful to laughing and saying, “Can you believe this? All the kids are out of the house.

This is our perfect opportunity in life to be intimate as often as we want.”

They had never discussed the issue with each other.

?

What other barriers may be getting in the way?

Another barrier is not having accurate

Relationships need care and attention – they need to be a priority.

Start by turning off the television and phone, making eye contact, summarizing what you think the person just said to you. Practice using “I” statements: “I feel sad.” “I feel frustrated when such and such happens.” The bottom line is that communication takes practice.

Find resources for couples living with MS: nationalMSsociety.org/ family MS CONNECTION: SUMMER 2015

RESOURCES

THE POWER OF CONNECTION

Attending your first multiple sclerosis support group meeting can bring up many emotions. Some people might feel relief in a community that understands MS, while others might feel sad in confronting their “new life” with a chronic illness, and may feel even more isolated.

That was the case for Linda Gill and Mary Hogen, who separately attended their first Society support group meeting in the 1990s shortly after they were diagnosed. While they each continued to attend their local support groups, their feelings of isolation remained.

Linda, originally from Detroit and now a resident of Hudson, Wisconsin, is African American. And though MS affects most racial/ethnic groups, it was perceived to be far more common in Caucasians. “Right after I found out about my MS, I connected to the Society,” Linda says. However, no matter how many meetings or educational programs she attended, she was often the only African American in the room.

Mary, originally from Iowa and a resident of White Bear Lake, Minnesota, is Caucasian and was born hard of hearing. She primarily uses American Sign Language (ASL) to communicate in groups of people and attended support group meetings with a hearing interpreter. She, too, felt disconnected from other participants.

One day, both Linda and Mary attended

MS CONNECTION

the same program about MS-related fatigue. “There was a big group of us, 22 maybe, and Mary mentioned something about it being hard to make friends,” Linda says. “I understood what she was going through. My husband and I were the only people in the room who were black. So I decided we should be friends.”

Linda and Mary exchanged e-mail addresses at the program and it wasn’t long before they formed a life-long bond. In an effort to impress Mary, Linda even decided she would learn ASL. “I wanted to learn how to sign so badly! And then Mary got digital hearing aids. I was so surprised by how she could all of a sudden hear me,” remembers Linda.

During one of their e-mail exchanges, Linda told Mary that she and another woman were going to start an MS support group, officially titled the Metro Area MS Group for People of Color.

Mary responded, “That’s great! I wish I could join.”

“Isn’t white a color?” Linda replied.

“Then see you next Saturday.” Since then, for more than five years, Mary has been attending that support group.

For the first few years, she was the only white person, but now there are other white people who regularly attend, as well as some people without MS, including care partners, family members and people affected by other chronic illnesses.

“We have so much fun. We will discuss some MS-related things, and we’ll focus on it when it’s necessary, but our group

is more about enjoying life together,” says Linda.

Together, attendees go to plays, throw holiday parties, do Zumba, and host barbecues. Most importantly, they laugh — a lot.

“Linda is one of the funniest people I’ve ever met. But really it’s just nice to be able to say to somebody ‘I’m too tired to do this’ and not have to make an excuse,” says Mary. “When you’re with people who have MS, and you’re walking very slowly, the people you’re with walk slowly, too. They don’t leave you behind 20 feet.

People don’t remember how important that is, to walk together. It’s the understanding that makes it easier. n

Make meaningful connections in your area call 1-800-344-4867 or visit MSconnection.org

Learn. Share. Connect.

The Society created MSconnection.org, a social networking website and online community for people living with MS, their loved ones and experts to connect in a safe and secure environment.

No one should have to face MS alone. Join thousands of people supporting one another and exploring the issues that shape your world.

Sign up and start connecting! cureMSco-wy.org 1-800-FIGHT-MS (344-4867)

MSconnection.org

5

GIVING SOCIETY SCHOLARSHIPS The National MS Society recently awarded $1,000 scholarships to 14 students in Colorado and Wyoming to help further their educational and career aspirations. The annual scholarship program was established 12 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. This year more than 830 students were recipients of over $1,218,950 in scholarship funds from the Society.

nationalMSsociety.org/ scholarship Congratulations to the Chapter’s Scholarship Recipients: Alyssa Boll

Union Colony Prep, Greeley

Stephanie Chamorro

Mitchell High School, Colorado Springs

Jimmy Porcadilla

Harrison High School, Colorado Springs

Jenna Manning

Virtual Academy, Lusk, WY

Lukas Kaugars

Widefield High School, Colorado Springs

Dibgy Kalert

Poudre High School, Fort Collins

Katherine Taylor

Alamosa High School, Alamosa

Mackenzie Dickman

Chatfield High School, Littleton

Sean Tevegaugh

Fossil Ridge High School, Fort Collins

Danette Dacey Bohl Thornton High School

Leah Merkowitz

Grandview High School, Centennial

Sarah Pastuer

Woodland Park High School, Woodland Park

Danielle St. Onge

Cheyenne Mountain High School, CO Springs

Paige Mcgaughey

Platte Valley High School, Roggen

6

Society Assists Educational Aspirations Leah Merkowitz is one of the outstanding students who received a National MS Society scholarship this year. While preparing for graduation, she took time out of her busy schedule to share what this award means to her.

Chapter: Leah, congratulations on your scholarship from the Society. Can you tell readers about your connection to MS? Leah: I was diagnosed with MS in March 2014 when I was a junior in high school. I had numbness and tingling in my hands and feet, and we thought it was a pinched nerve from playing volleyball. Then I started having blurred vision and feelings of electric shocks going through my body and was referred to a neurologist. I had an MRI and learned that I had MS. Had you ever heard of MS? I had heard of it before, but I was unaware of its causes, symptoms and how destructive it can be. My doctors have helped me understand it a lot better, despite how confusing and unpredictable MS can be.

How did your friends react?

My friends have been a huge support system. They were shocked and scared at first, but stayed with me every step of the way. I wouldn’t be where I am today without their support, as well as that of my amazing family.

What are your educational plans?

I look forward to attending the University of Wyoming and am enrolled in the pre-nursing program.

I receive a monthly infusion therapy at Anschutz Medical Center and have met a lot of nurses at my health

appointments. They were very compassionate and inspired my career path. One day I would like to help others as much as my medical care providers have helped me.

How did you learn about the Society’s scholarship program?

I found the scholarship program through the National Multiple Sclerosis Society's website. I like to keep myself informed on news and recent updates in my community and nationwide and I happened to come across the information on the site.

What does this scholarship mean to you?

It means a lot. I know scholarships can’t be given to everyone and this will really help with expenses.

Is there anything you would like to share with Chapter newsletter readers?

I want them to know that I’m very optimistic about the future and I realize that positive things have come from this entire journey. I discovered my true passion for medicine and what I want to pursue in my life. One day I know I will be helping kids in similar situations, just like I have been helped. I have met some amazing people who share my diagnosis and are leading extraordinary and inspiring lives that will contribute to a cure for MS some day.

MS CONNECTION: SUMMER 2015

GIVING

THE END OF MS: NOW People living with MS need solutions. They need our commitment, our energy, and our support to push the boundaries even further. The NOW campaign is a bold initiative dedicated to moving research forward by raising $250 million to drive MS research.

The goal is big. No question. But every dollar counts.

We’ve made amazing headway so far, and through your ongoing support we will discover breakthroughs, treatments, rehabilitation, prevention, and, ultimately, an end to MS forever.

As we enter into the homestretch of our groundbreaking NOW MS Research Campaign, please continue your critical support so that we may push the boundaries of discovery even further and help people live their best lives now. Together, we can prevent MS from impacting future generations.

- CYNDI ZAGIEBOYLO, Society President & CEO nationalMSsociety.org/research/ research-we-fund

HEALING THROUGH HELPING OTHERS For the last few years, I have been making Rice Krispies treats and giving them to others. I often mold these treats into seasonal shapes. For the Super Bowl, I make footballs. I also create candy corn shapes for Halloween, wreaths for the holidays, and flowers for spring.

My sister teases that my fixation with these sweet creations is an addiction and suggests that I need an intervention because I “can’t stop anytime I want to.” But she made me think: “Why am I doing this?”

I think I make them as a way to remember others. Sometimes I give them to someone who is sick. Other times, I give them to co-workers or neighbors.

It is a simple, spiritual activity for me.

Focusing outside of ourselves can be healing. Facing an illness like multiple sclerosis brings its own challenges, such as getting to doctor’s appointments or managing medications. Even everyday tasks can seem difficult: getting up in the morning, paying bills, and doing laundry.

But we can all benefit from giving back, from thinking of others, from volunteering - even if we have health challenges.

According to a study by the Corporation for National and Community Service, volunteers have higher functional ability, lower rates of depression and less incidence of heart disease.

Even something small will do.

Volunteering for a non-profit organization by making phone calls or stuffing envelopes can be a great place to start.

It does not have to be a huge task, but something that shifts our awareness and energy to other people or causes.

People with MS can also do good by acknowledging their support partners or healthcare professionals. A simple phone

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

call, a hug, or just saying, “Thanks, I appreciate all you do for me,” goes a long way.

Everyone needs to be affirmed and loved.

The words of poet Emily Dickinson are motivating to me: “If I can stop one heart from breaking, I shall not die in vain.” n Karen J. Zielinski, OSF, a member of the Sisters of St. Francis of Sylvania, Ohio, has lived with MS since 1975. Her recent book, Hope and Help for Living with Illness (Franciscan Media), discusses chronic disease and coping strategies.

Call the National MS Society: 1-800-344-4867 for volunteer opportunities near you.

7

EVENTS

Rocks and

Rolls!

Recognizing 30 Years of Progress

A mega ‘thank you’ to everyone who participated in and supported the 30th Bike MS Colorado, presented by Point B! During the course of the weekend, 3,000 cyclists logged 450,000 miles supported by more than 600 marvelous volunteers to ensure a fun and safe experience.

THANK YOU 2015 BIKE MS COLORADO SPONSORS PRESENTING SPONSOR

Special congratulations go out to Team Left Hand, which in just eight years hit the milestone of $1 million cumulative fundraising! They join a select group of Bike MS teams that have achieved this feat: the Sugar Bees, Raw Hinies, GreatWest Life and Stay Fit at Hyatt.

SNAPSHOTS

OFFICIAL VEHICLE OF BIKE MS

A.

C.

B.

D.

A. All Team Cureitol members rode the century course this year.

B. Chapter President Carrie Nolan with Board Chair-elect Travis White, as he prepared to embark on his third Bike MS ride.

C. Members of Team NREL celebrated after finishing their first Bike MS ride.

D. Volunteers Laurie, Denise and Lynn helped registration run smoothly.

Find all your event day photos on Flickr:

8Tracey, diagnosed in 2005

flickr.com/nmss_co-wy

MS CONNECTION: SUMMER 2015

EVENTS

GOING THE DISTANCE

As an electrical engineer, I’ve been interested in how MS operates, as it’s similar to the multiple undesirable short circuits resulting from uncontrollable insulation breakdown in complex electric circuits.

Thousands of bikes fill the 150-mile+ course during Bike MS Colorado, but one of the most unique is ridden by Everod Samuel, PE, president of Samuel Engineering and captain of Samuel Engineering’s 22-member Bike MS team.

Samuel has always had a love of cycling.

As a young man he represented his Caribbean homeland, Grenada, in international road and track cycling competitions, and was the island nation’s cycling champion for three years. He left Grenada in 1981 to pursue a degree in electrical engineering at Howard University. He later came to Colorado and continued his education, earning a Master’s degree in electrical engineering and an MBA from the University of Colorado.

Cycling took a back seat for years as Samuel directed his time, along with his wife, Claudia, toward building a family, his career and what is today a 180-person engineering business. By 2011 he was ready for exercise and a challenge again, so he returned to his passion - cycling. “I decided that, at my age, it is no longer wise to be riding at high speeds anymore, so I investigated options for an enjoyable alternative challenge and selected a modern replica of an 1880’s penny farthing bike (also called an Ordinary) handmade by Rocky Mountain High Wheel in Colorado Springs.

Ready for the Ride Getting involved in the community was the next step. “I knew about Bike MS and

NO ORDINARY RIDE

had ridden in the Society’s Bike MS Royal Gorge ride in the early 90s. As an electrical engineer, I’ve been interested in how MS operates, as it’s similar to the multiple undesirable short circuits resulting from uncontrollable insulation breakdown in complex electric circuits. In 2013 I decided to form a Bike MS team, as being able to cycle and help a great cause is a tremendous combination. That year, we had five people. This year our team raised $12,500 to support MS programs and research. Next year we hope to grow Samuel Engineering Inc.’s team to 50 participants,” Samuel continued.

Multiple Benefits of Participation In addition to good works, the benefits of riding and training as a team cross into the workplace, resulting in enhanced collegiality. “As an employer, an experience such as Bike MS humanizes everyone. In the heat of battle of daily work, you don’t see the other side of people. Bike MS gets people together and exposes people to each other at all levels within the firm,

This bike, which has no coasting nor gearchanging features, requires that the rider be pedaling at all times in one gear - on flat, up or down hills - while remaining mentally alert. The Penny Farthing provides a much more intensive and complete workout at slower speeds than a modern bike would. "Though I can get up to 35 mph for short periods, I would typically travel at

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

which increases understanding. The staff learns that leaders are humans, who deal with and care about day-to-day issues too.

“I encourage staff members to get involved and many have picked up cycling as a result. Members of our firm who don’t ride also come out to our training rides, and have started volunteering for the Chapter, which enhance camaraderie and ultimately add to a family atmosphere and bond at work. One other unanticipated benefit I have observed is the amount of inadvertent business networking that occurs due to the large number of diverse professionals that Bike MS attracts. I have seen many clients and potential business partners on the MS ride; even neighbors that I have not seen for a year.

“The people I’ve met at the MS Society and those who are inflicted by MS come from diverse backgrounds, but their commonality is great human spirit and genuine personalities. Bike MS is a way to help in a small way while keeping yourself healthy,” Samuel added. n

a manageable and safe pace of around 13 mph. Like a plane, take-off and landing is most challenging on a Penny Farthing but those routines can be mastered with persistence. I get the full experience – fun, a great view of the landscape, a complete workout plus an amazing physical and mental challenge while traveling at manageable speeds,” said Samuel.

9

EVENTS

A Time of Reflection

When Bike MS Colorado launched in 1985, there were no treatments for MS and the first-year riders set out to change that. The 100 cyclists raised approximately $45,000.

Fast forward to 2015. The Chapter now regularly fields 3,000 cyclists – and last year they surpassed $4 million in fundraising for the first time. Thanks to every mile pedaled over the past three decades, there are now 12 FDA-approved treatments for MS. This support will lead to the day MS stands for ‘mystery solved'!

HONORING A FRIEND LEADS TO HIGH GEAR INVOLVEMENT

WYOMING’S RIDE 2014

EXPLORING THE WILD WEST! presented by

It was the loss of her long-time friend Carye to MS 10 years ago that first led Cheyenne resident Lesley Osen to the Chapter. “I felt that I had to do something so I joined a Walk MS team as a way to honor the memory of Carye and make a difference for others living with MS,” Lesley said.

Enjoy a cycling adventure with over 300 of your closest friends.

Rolling plains, mountain climbs, scenic vistas, and historic towns are waiting for you on Bike MS Wyoming presented by Toyota.

Day 1: Enjoy sweeping views of the majestic Devil’s Tower National Monument while enjoying the cooler air of the route’s highest altitudes.

Day 2: Head east along rolling hills towards South Dakota, covering 78 miles.

Bike MS: Wyoming 2015 August 15-16, 2015 Sundance, WY

#bikeMS #bikeMSwy

10

raffles and are considering holding a barn dance. We also take part in a “Thankful Thursday” event sponsored by a local lounge, where people can stop by, have a drink and bid on auction items. These activities raise funds, but they also bring people together and put the spotlight on this disease,” she added.

Riding in Bike MS is a fun and meaningful way to let people know about MS. It was during a Walk MS that another friend asked her if she wanted ‘to give Bike MS a shot’. “I like challenges so I decided to try it. The first year I did the ride on a street bike, but made it through.

I enjoyed the experience so much that I purchased a road bike, became co-captain of team Megasorasses and now look forward to participating in my seventh Bike MS Wyoming ride this August.”

Lesley has also ridden in Bike MS Colorado. “Both are amazing events.

The Wyoming ride has a smaller group of cyclists, but they raise an impressive amount of funds each year.” Last year her 25-member team raised $140,000!

“We get creative to raise funds. In addition to pledges from friends, co-workers and family, we’ve held mud volleyball tournaments,

As many people have experienced, the more you are engaged, the more you become aware of the magnitude of the ongoing presence and impact of MS. Lesley recently learned another friend was diagnosed with MS, which makes her even more passionate about the upcoming ride and all the support it garners for programs and promising research.

“I’m a vocal person and am now more likely to share information about MS and make connections because of my involvement. Riding in Bike MS is a fun and meaningful way to let people know about MS, how they can help and become part of a great community committed to finding a cure so no one else has to lose a family member, friend or peer to this disease. ” n

bikeMSwyoming.com MS CONNECTION: SUMMER 2015

EVENTS

Walk MS: Rain or Shine!

“After years of hosting outdoor fundraising events, we are used to encountering all types of weather conditions, but this was really a highly unusual year,” said Kristin Gibbs, vice president of development. “Mother Nature imposed some challenges on our Walk MS campaign this year, but there is still time to share support. For those who were unable to step out, consider stepping up and making a gift to your local Walk MS event

by September 30!“ n

Weather was synonymous with Walk MS events this spring. Supporters found themselves in step with postal service carriers as “neither snow nor rain nor heat nor gloom” deterred them from stepping out in communities across Colorado and Wyoming to raise awareness and funds. While Denver walkers enjoyed a sunny day, umbrellas and rain gear dotted Walk MS Pueblo and Northern Colorado. On the chillier side, Laramie walkers had to head indoors and Casper walkers saw flakes fly.

ONE MORE WALK MS 2015 EVENT! Walk MS Gillette Saturday, September 12, 2015 Dalbey Memorial Park | 9am

walkMSwyoming.org

#walkMS #walkMSwy

THANK YOU 2015 WALK MS SPONSORS

MARK YOUR CALENDARS

TITLE SPONSOR

OFFICIAL VEHICLE SPONSOR

MS on the Move Luncheon

Thursday, September 11, 2015 NEW: Westin Downtown Denver

Dinner of Champions

Friday, September 12, 2014 Embassy Suites Loveland

Find event details and RSVP information visit:

cureMSco-wy.org

EVENTS FUNDRAISING DEADLINES Walk MS: Bike MS CO: Bike MS WY:

Prize Deadline: Aug. 7 Club Deadline: Sept. 30 Prize Deadline: Aug. 7 Club Deadline: Sept. 30 Prize & Club Deadline: Sept. 30

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

11

RESEARCH

MS ALLIANCE

Understanding Progressive MS In a recent issue of Lancet Neurology, top researchers and patient advocates review the latest research on progressive multiple sclerosis, outlining recent advances and urging the MS research community to focus on finding solutions for people who are affected by this form of the disease. The following are highlights from these papers:

University) review clinical trials of treatments or rehabilitation focusing on MS symptoms. Their main finding is that too few studies involve people with progressive MS only, and that more studies are sorely needed to determine effectiveness in this population. Research on treatments for symptoms also takes on greater significance in the absence of disease-modifying therapies for progressive stages of MS. The authors suggest that testing several interventions at once may move research forward in this area.

How to treat symptoms?

Drs. Anthony Feinstein (University of Toronto), Jenny Freeman (Plymouth University) and Albert Lo (Brown

Overcoming barriers Dr. Timothy Coetzee (National MS Society), Dr. Paola Zaratin (Italian MS Foundation) and MS blogger Trevis Gleason comment that more focus is necessary in three areas: research collaboration; regulatory innovations (regulatory authorities have less experience with progressive forms of MS and may expect trials that are too onerous to perform); and sustained and increased research funding.

Every time a new treatment for relapsing-remitting MS comes on the market, it serves to remind people with progressive MS that they are still waiting.

- DR. ALAN THOMPSON

What causes progression?

Drs. Don Mahad (University of Edinburgh), Bruce Trapp (Cleveland Clinic) and Hans Lassmann (Medical University of Vienna) review an ever-increasing understanding of the kind of nervous system damage that leads to progressive disability in people with MS. These include oxidative injury (a process wherein “free radicals,” normal byproducts of bodily processes, cause nerve tissue injury) and injury to the mitochondria (energy-producing bodies within nerve cells). These injuries, generally thought to be launched by MS attacks, are then amplified by agerelated changes in brain activation.

Though much progress as has been made, there is a need for laboratory models that truly represent the chronic stages of injury in MS to move this research forward.

fluid biomarkers to track treatment benefits.

Lessons learned

A much-needed focus

Drs. Daniel Ontaneda (Cleveland Clinic), Robert Fox (Cleveland Clinic), and Jeremy Chataway (Queen Square, University College London) review the frustrating history of negative results from phase III treatment trials in people with progressive MS. Their review offers lessons learned and strategies for turning these lessons to positive outcomes. These include the need for better clinical measures of effectiveness, including cognitive testing and patient-reported outcomes; recommendations for better trial designs and conducting trials for at least 36 months; and using advanced imaging tools and spinal

Dr. Alan Thompson (University College London) says that the most fundamental issue in developing new treatments is the need to understand the events that lead to the development of progressive MS. A close second is the need for innovative trial design. He also encourages new approaches to rehabilitation.

He notes that the Progressive MS Alliance, for which he serves as Chair of the Scientific Steering Committee, is focusing on this daunting challenge with a mission to develop effective treatments and symptom management. n

INTERNATIONAL PROGRESSIVE MS ALLIANCE The Alliance’s six founding members (the MS societies of Canada, Italy, the Netherlands, the UK and the USA, and the Multiple Sclerosis International Federation) are putting the framework and funding in place to help drive research forward, with the sole objective of improving the lives of people with progressive MS.

For more information visit:

12

progressiveMSalliance.org MS CONNECTION: SUMMER 2015

RESEARCH

MS INNOVATION

DESIGNING SOLUTIONS

Dr. Christopher Luzzio doesn’t just use assistive technology to help people with multiple sclerosis—he designs and builds it, too.

Creating a bridge Dr. Luzzio works as an MS clinician at University of Wisconsin (UW) Hospital and Clinics in Madison, but he also teaches at the University of Wisconsin College of Engineering. This is because of his background in bioengineering— specifically, mechanical engineering.

“I’ve always been a tinkerer,” he says, “taking apart machines and fixing them or figuring out how they work and building new ones.”

Dr. Luzzio adds, “Bioengineering is applying engineering practice to solve problems in medicine or biology.” An example of this type of work would be the development of an artificial limb. At the UW College of Engineering, he mentors and teaches students how to design and fabricate assistive devices. He also meets weekly with senior design students in a class led by associate professor, Dr. Heidi-Lynn Ploeg.

“Necessity is the mother of invention,” Dr. Luzzio said. “When I see a need for a device to help one of my patients with

MS, I present the challenge to our engineering design students.” The students then design a device, build a prototype and test it. The students get real-world experience, working directly with people living with MS to develop potential solutions for the challenges they are facing.

“I find it rewarding to help educate young engineers,” Dr. Luzzio says. “My presence has helped bridge their engineering education, medicine and community service.”

Useful solutions Drs. Luzzio and Ploeg are members of UW-CREATe (Center for Rehabilitation Engineering and Assistive Technology), an organization that finds independence and mobility solutions for people with disabilities. Dr. Luzzio’s latest project helped a woman with MS use an e-reader more efficiently by mounting it on a stand that includes a sensor connected to her finger. When she moves her finger, metal arms contact the screen

and advance the page, which had been difficult for her to do without assistance.

Other projects that Dr. Luzzio and his students have worked on include creating supports for weakened arms, various exercise machines and a wheelchair designed to help a person with severe leg weakness get back into the chair more easily after a fall. This semester, students will work on a retractable minidrawbridge to go over a sliding door entryway, which will allow easier wheelchair access. One of Dr. Luzzio’s favorite projects was designing and building a prosthetic arm control system to help with fine motor skills.

“What’s exciting is seeing a need, creating a solution for that need, and then making it into reality,” Dr. Luzzio says.

“Unlike basic science investigations for MS that may require years to reach results, these activities lead quickly to an obtainable useful product that will help a person.” n

Generic Form of Copaxone Approved In April the FDA approved a generic form of Copaxone, “Glatopa,” which is a disease-modifying therapy developed by Sandoz, a Novartis company and Momenta Pharmaceuticals. This generic medication is a 20 mg dose that is injected under the skin daily and is equivalent to the 20 mg brandname drug. However, Glatopa is not a generic version of the 40 mg dose of Copaxone taken every three days.

“Having a generic option for one of the MS disease-modifying therapies is an important milestone, and it has the potential to increase access to MS therapies,” commented Dr. Bruce Bebo, executive vice president, research at the National MS Society.

“Early and ongoing treatment is currently the best way we know to reduce future disease activity for people with relapsing forms of MS.”

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

For more MS research updates and info visit: nationalMSsociety.org/ research

13

PROGRAMS Food for Thought Programs Greeley, CO

Aug. 27 | 6pm Farr Library 1939 61st Ave

Cheyenne, WY

Sept. 1 | time TBD Laramie County Community College

FOOD FOR THOUGHT

essential to living well with MS.

MS and Nutrition Understanding the relationship between MS symptoms and diet is important. Diet can affect your MS symptoms and healthy eating is

Learn nutrition basics for living a healthy, balanced life with MS and how you can conserve energy in the kitchen to easily integrate healthful eating into your lifestyle.

Western Slope Yoga for MS Every Wednesday | Sept. 23 ­- October 28 Cost: $45 for 6 week series

SAVE THESE DATES: Medicare Open Enrollment: Oct. 15 ­- Dec. 7 Marketplace Open Enrollment: November 1

Sept. 24 | 5:30pm Location TBD

Glenwood Springs, CO

Oct. 1 | 5:3pm Glenwood Springs Community Center

Register: 1-800-344-4867 opt.1

Glenwood Springs

5:30-6:30pm

Register by contacting Nora Fabris: 303-788-4010 or nfabris@thecni.org

Artfull Cup • Grand Junction

Durango, CO

3-4pm

NEW MS and Men Support Group - Grand Junction: Connect with other men living with MS. For more information call Tom O¹Donnell at (757) 831-7109.

Thursdays | 11am-Noon

Sept. 2 | 6pm Longmont Public Library 409 4th Ave

Sept. 16 | 1-3pm NMSS Offices 900 S. Broadway, Suite 250, Denver 80209

Grand Junction

Take Action With Your Chronic Disease: An empowerment workshop series for those living with a chronic condition. Learn to be proactive in how you communicate, cope with challenging emotions, and take physical care of yourself, so you can move forward with confidence.

Cost: $60 per person OR Thursdays | July 23 - Aug. 27 $100 per couple 9:30am - 12pm Colorado Neurological Institute 701. E. Hampden Ave. #415, Englewood, CO 80113

Longmont, CO

Denver, CO

Register: 1-800-344-4867 opt.1

ADVERTISEMENT

LIVE A HIGHER

QUALITY OF LIFE

Comprehensive Rehabilitation for Multiple Sclerosis At HealthSouth Rehabilitation Hospital of Littleton, our multiple sclerosis (MS) program offers specialized services such as: • Daily living skill strategies and adaptations • Development of home exercise and symptom management program • Energy conservation training • Therapies to improve range of motion, balance, strength and flexibility For more information or to make a referral, call 303 334-1111.

A Higher Level of Care

®

1001 W. Mineral Avenue • Littleton, CO 80120 303 334-1111 • Fax 866 291-5251 • healthsouthlittletoncom ©2015:HealthSouth Corporation:1001650-03

14

MS CONNECTION: SUMMER 2015

OF NOTE MuckFest MS: Different Obstacles-Same Goal!

Anyone who lives with or is affected by MS knows that it takes determination and resilience to overcome obstacles that MS poses daily. On May 16, more than 2,500 community members came together for MuckFest MS and showed their fortitude by taking on different set of obstacles – one that were wet and muddy - to end MS.

Board trustee and captain of the Muckin’ for Micheal’s Mom (M4MM), Michael Pierce fielded the largest team this year, 201 strong which raised $35,000 At the conclusion of the fun day in Larkspur, Colorado, more than $200,000 was raised!

Check out photos from this fun 5k mud run for everyone at muckfestMS.org

Fossil Ridge Seniors Build Leadership Skills and Community!

Fossil Ridge High School’s Advisory Period gives students the opportunity to have a voice in school decisions, learn leadership skills and build a strong sense of community over four years. As a part of the senior curriculum, students choose a service-oriented capstone project, which benefits the immediate community. As the 22 students in an advisory period led by science teacher Mark Morehouse pondered options, they were inspired by one of their peers whose mother lives with MS and chose to help a local family affected by the disease.

Reaching out to the Chapter’s Northern Colorado office, the students were connected with Jeannie and Bill Kelso, owners of a five-acre horse ranch in Fort Collins. Jeannie has lived with MS since the mid-1990s and the couple found they needed help with some home maintenance tasks.

As part of their leadership learning, the students were responsible for all aspects of the project, from coordination to completion. They helped replace a living and dining room ceiling, caulked a bathroom and erected a fence to protect the Kelsos' garden from wandering chickens! Along the way students learned and demonstrated the

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

Fossil Ridge seniors work on fence construction as part of their capstone project.

leadership and team skills necessary to successfully complete the hands-on project. The experience also fosters giving hearts, and makes giving back real and relatable to students who will carry forward the lessons learned as they enter the next phase of their lives.

15

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

Sept.17, 2015

NEW Location!

Westin Downtown Denver

Moving lives forward one plate at a time!

Network with Denver’s business and philanthropic community as we dine to bring hope to more than 14,000 people living with MS in Colorado and Wyoming.

Rebekah Gregory KEYNOTE SPEAKER

Boston Marathon Bombing Survivor

Learn more and purchase your tickets today: cureMSco-wy.org (Click Fundraising Events)