Fall 2014 MS Connection Newsletter

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Bike MS 2014 FundraiSing HealtH inSurance

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NationalMultiple SclerosisSocietyColorado-Wyoming Chapter

6-7 14inSide tHiS iSSue:

ProgreSSive MS reSearcH volunteer recognition

MS ConneCtion Newslettercolorado-WyoMing cHaPter

FALL 2014

national Caregivers MonthNovember is

MS connection: Fall 20142

dear Friends,

there is a quote by chinese philosopher laozi that says “the journey of 1,000 miles begins with a single step.” How those steps are taken—aimlessly or with direction and intent—can make all the difference in reaching a desired destination.

i start every day looking over a list of activities i want to accomplish —my plan for the day. this work supports a much larger strategic plan that drives and directs the work of the chapter to ensure our resources are best used to maintain momentum, raise awareness and engage supporters—all of which are instrumental in moving us closer to our goals of a world free of MS.

Everyone can benefit from having a daily, weekly, yearly and long-term plan, which becomes a road map that guides you toward a goal or destination. of course, you may experience bumps in the road or a detour, such as a diagnosis of MS. When building a plan, it is important to include resources and alternatives needed to get back on track.

In this newsletter you will find useful planning information related to personal finances, medical insurance, and care giving. during this season of gratitude, you can also express gratefulness through an intentional planned gift that will ensure ample funds are available for promising research and programs, leaving a legacy that continues to lift the lives of so many affected by MS.

the chapter has experienced another extraordinarily successful year; our Bike MS colorado surpassed $4 million, making it one of only three Society rides that has ever achieved this fundraising feat. Walk MS denver is the Society’s number one Walk MS in the nation for number of participants. and none of this is possible without the support of our 2,000 volunteers sharing their time. great outcomes are rarely, if ever, achieved by accident. these milestones are the result of developing a plan, exemplary execution and the involvement of you, our thousands of constituents, all working together to achieve a common goal: ending MS forever.

i am continually honored to serve as the president of your Society. as the board, staff, volunteer committees and i plan for another remarkable year, thank you for your past support and continued commitment.

Best wishes for a safe and happy holiday season and new year.

Letter From the President

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

if you or someone you know has ms—studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional, or contact the National multiple sclerosis society (Nmss) to learn about ways to help manage multiple sclerosis and about the current research that may one day reveal a cure.

The Nmss does not endorse products, services or manufacturers. such names appear here solely because they are considered valuable information. The Nmss assumes no liability for the use of contents of any product or service mentioned. information provided by the Nmss is based on professional advice and expert opinion. information provided in response to questions do not constitute therapeutic recommendations or prescriptions. The Nmss recommends that all questions and information be discussed with a personal physician. The Nmss is dedicated to a world free of ms. ©2014 National multiple sclerosis society, Colorado-Wyoming Chapter

Chapter PresidentCarrie H. Nolan

Board of TrusteesKyle Ocasek, ChairTravis White, Chair ElectBrandt Wilkins, Immediate Past ChairKathryn Spritzer, SecretaryJason Sibley, TreasurerBrooke Allen, MDCarl BerglindWhit ConantJohn Corboy, MDChris DoerrRob HartnettMarley Hodgson IIICarin KnickelDeborah O’NeilRichard Raymond, MDShauna Giddings SchmitzJo Wilson

Emeritus TrusteesGeorge Garmany, MDRalph HoldenDavid LordJanet Savage

Carrie H. Nolan President

Sincerely,

every connection counts was the theme of the chapter’s annual meeting, which was held on october 16 in an exclusively virtual format for the second year. through the use of technology, meeting attendees in an area covering 200,000 square miles connected to conduct business, recognize achievements and celebrate successes that took place throughout this noteworthy year.

the meeting concluded with a presentation on research advancements by dr. James Salzer, professor of cell biology and neurology at new york university, who has received a Society research grant to study myelin repair. if you missed this meeting and would like to hear dr. Salzer’s presentation, visit: nationalMssociety.org/annualmeeting

Momentum & Success!2014 Highlights At-a-Glance

• Overall revenue increased 4%

• $1.7 million contributed to the Society’s $50 million research budget

• FDA approval of 11th MS therapy for

relapsing/remitting MS

• Bike MS Colorado set a fundraising record, surpassing $4 million

• Walk MS Denver, the largest Walk MS in the nation, raised more than $1 million for the third year in a row

• Overall Walk MS Wyoming revenue increased more than 20%

• Hike MS participation and revenue increased nearly 40%

• 2,000 volunteers contributed more than 24,000 hours of service

• 83% of funds raised were spent on programs and research

2014 recaP

eVeNtsIN tHe News

N A T I O N A L M S S O C I E T Y

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

Energy filled the ballroom at the Grand Hyatt Denver as more than 300 supporters gathered for the Chapter’s annual MS On the Move Luncheon on September 10. This year the event raised more than $125,000 to support MS research and Chapter programs and services.

CBS4 anchor and Chapter supporter Karen Leigh emceed the event, which featured firsthand stories that squarely placed the spotlight on the luncheon’s purpose. Keynote Kristy Salerno Kent was a budding actress when she started experiencing odd symptoms and quickly found that her greatest performances were hiding her MS. After giving up her career dream, she finally confronted MS and reclaimed her artistic voice.

Carl Craig shared the MS journey of his daughter Heather, who was

diagnosed at the age of 14. Today she is thriving, off to college and is able to take an oral therapy, an outcome of ongoing research support.

Dick Kelly, retired CEO and board chair of Xcel Energy, and his wife Robin were celebrated for their philanthropic, community and Society support with the Chapter’s Spirit Award, sponsored by Novartis. The Kellys became involved with the National MS Society following Robin’s MS diagnosis in 2006. Both are long time supporters of the Society and have been instrumental in developing collaborations and connecting organizations to advance efforts that will lead to a cure.

Our thanks to the organizing committee and everyone who attended this year. Your support continues the momentum that will lead to a world free of MS. n

MS on the Move Luncheon 2014

Annual Meeting and MS Research teleconference

A special thank you to our Golden Circle Members who donated $1,491,137 in Fy2014. golden circle members are individuals who give a one-time gift of $1,000 or more, annually. For more information about becoming a member visit:nationalMssociety.org/goldencircle or contact [email protected]

Dick and Robin Kelly

Kristie Salerno Kent, Keynote Speaker

Tracey, diagnosed in 2005 MS connection: Fall 20144

The day was bright and outlooks were high during the last weekend in June as more than 3,000 cyclists participating in Newmont Bike MS, presented by Point B set out to raise significant funds to end MS forever. This year as they rode the course they also made history—raising an all-time record of more than $4 million!

How did they do it? “There were many factors that contributed to achieving this truly remarkable feat,” said Kristin Gibbs, Chapter vice president of development. “We once again registered the maximum number of cyclists, which is always exciting, and recruitment efforts were key."

“I am honored to recognize the fundraising efforts all participants. Our Top 100 riders alone raised more than $1.1 million. Our top teams of the past several years continued to be strong and the average fundraising continues

to increase each year. A fundraising record was also set in our virtual rider category by an individual who raised more than $50,000 in addition to volunteering to keep cyclists safe during the ride,” Gibbs continued.

“We have an outstanding reputation for hosting a strong, well-supported ride, which also contributed to the ride’s success and continues the momentum that has made Colorado’s Bike MS the Society’s third top ride in the nation.

“Our congratulations go out to every rider, donor, volunteer, sponsor and staff member as this fundraising record could not have been achieved without their exemplary commitment, generosity and dedication to everyone living with MS … and to moving us closer to a world free of MS. A new bar has been set and we look forward to holding another highly successful ride during our 30th Bike MS next year,” Gibbs emphasized. n

Hiking in colorado’s high country is always rewarding; add fully supported trails at a premier mountain resort while raising funds to help people living with MS and you have an adventure to remember—Hike MS keystone.

This was the first time the Chapter held Hike MS at keystone resort. on Friday evening participants took a gondola to the top of Summit county’s largest ski mountain for packet pickup, and were treated to spectacular views. the next day a record 410 participants hiked trail options ranging from an easy two-mile base route to a challenging 12-mile course as they raised more than

$107,000 for MS research and local programs and services.

“the number of participants and our fundraising increased nearly 40 percent this year,” said kyle Staarmann, chapter development associate. "People know that Hike MS route options are selected and staffed to ensure a safe and enjoyable time for all ages. this year having access to the gondola and “kidFest kidtopia,” added to the fun of the weekend. We look forward to continuing to grow this event and encourage families and friends to Hike MS next year.”

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Surpasses $4 Million Mark

Bike MS colorado

Bike Ms wyoming also broke a fundraising record this year, raising $265,000! a change in venue from downtown Sundance to crook county fairgrounds added to unity of the event that fielded more than 200 cyclists and volunteers.

Hike MS 2014 cHanging our altitude aBout MS!


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Laughter filled the air throughout the chapter’s third annual MuckFest MS, which was held on September 13 in larkspur, colorado. More than 2,000 participants took part in friendly competition as they ran, sloshed, climbed and slid across a course filled with obstacles and muddy pits, trenches and craters. “We had 327 teams this year

and have raised nearly $180,000,” said chelsea Hixson, chapter community outreach manager.

“this event is unlike any other and is a fun way for people to try something they’ve never done before - and it supports a great cause!”

MuckFest MS 2014 #getdirtydenver!

MuckFest MS Moves to Spring in 2015! MuckFest MS 2015 will be held on May 16 at the same location. talk to your friends, form a team and start planning now to participate in this unique and challenging event. Play in the mud and help raise funds to end MS forever!

muckfestMs.org

The Chapter’s 21st Annual Northern Colorado Dinner of Champions hosted more than 300 community members at this annual evening of recognition and fundraising that garnered nearly $110,000!

The Chapter presented its prestigious Hope Award to honorees Conrad T. and Cheryl Swanson, and Curt and Nancy Richardson in recognition of their exceptional commitment to philanthropy, volunteerism and advocacy.

The Richardsons founded OtterBox, a successful company that produces

protective phone and tablet cases. The couple supports youth, employee volunteerism and the community and established the OtterCares Foundation in 2010, which gives back to the Northern Colorado community through a variety of programs.

The Swansons are long time supporters of the National MS Society and host an annual fundraiser at their home to fund MS research. Additionally, they support many local and national organizations that serve people living with disabilities and serve as advocates.

Brooke Raymond received the MS Champion Award, which honors a person living with MS who supports the Chapter and MS community.

Brooke was diagnosed in 2009 and became involved with the Chapter by starting a Walk MS team and has been a top Walk MS fundraiser ever since, raising more than $100,000. She also volunteers and is a spokesperson to raise awareness about MS. n

2014 Honoreesdinner oF cHaMPionS

On October 4, 2014 180 runners traversed a fun and eclectic course that included bike paths, town sidewalks and back country trails at the second annual aspen tnt (town ‘n trail) 10k. the event concluded with a post-race party where participants enjoyed music, refreshments and prizes as they celebrated raising $64,000!

event planner lexi Mcnutt attributes the success of her do it yourself (diy)

fundraiser to having a plan and sticking to it. “during our initial planning we determined fall would be an ideal time for a run as there was a void in aspen 10k events at that time of year. Having fantastic prizes, such as skis and an overnight stay at the little nell, is also a draw. to be eligible for the prize drawings, participants had to raise a minimum $50 with their entry fee, which increased our fundraising, ” she said.

cureMsco-wy.org

Aspen tnt 10K Race raiSeS $64,000

learn more about Do It Yourself fundraising and how you can get involved!

register at

Brooke RaymondMS Champion Award recipient

nationalMSsociety.org/research


The achievements of Dr. Barry G.W. Arnason, the 2014 recipient of the Dystel Prize for Multiple Sclerosis Research, are many, and include such significant contributions as laying the groundwork for the development of immune-directed therapies and understanding how the different components of the immune system work in MS. However, some of his discoveries hold particular significance for people with progressive forms of MS.

Understanding Progressive MSMuch MS research has focused on the role of T cells, which are a specific type of white blood cell that somehow turn on the central nervous system and produce

damaging inflammation. However, “I don’t think T cells have much to do with progressive MS,” said Dr. Arnason. “I think the problem is activation within the central nervous system of microglial cells, and that activation is the key to potential treatments of progressive MS.” Dr. Arnason made these comments in the opening lecture at the 2012 Annual Meeting of the Consortium of MS Centers in San Diego, while emphasizing that MS research should focus more on progressive MS.

Dr. Arnason’s research into progressive MS has also helped to uncover evidence that damage to the spinal cord leads to the increased activity of certain docking sites on immune cells, suggesting a vicious cycle of immune changes, damage and increased immune activation. Along the way, he also

contributed to the better understanding of other disorders such as Guillain-Barré syndrome and myasthenia gravis.

training the FutureDr. Arnason is also planting the seeds for high-quality MS care in the future. The University of Chicago Medical Center, where he is the James Nelson & Anna Louise Raymond Professor of Neurology, recently received an Institutional Clinician Training Award from the Society. These awards provide five years of funding to support the establishment of a world-class training program, thereby attracting the best MS clinicians over multiple years.

The Dystel Prize is awarded jointly by the National MS Society and the American Academy of Neurology. The award is made possible through a special fund established in 1994 by the late Society National Board member Oscar Dystel and his late wife Marion in honor of their son John Jay, an attorney whose promising career was cut short by progressive disability from MS. n

reseArCH

FocuSing on Progressive MS

To learn more about Dr. Arnason and past Dystel recipients, visit: nationalMssociety.org/dystel

è Going with Your Gutone of the most interesting factors in the complex picture of MS, to my mind, is the growing body of research on the role of the “gut microbiome.” each of us has millions of bacteria living in our guts. Most of these bacteria are harmless as long as they remain within the inner wall of the intestine. But in MS, these bacteria may be contributing to the MS immune attack. dr. Jhangi and colleagues at Harvard examined microorganisms in people with MS who were not on any disease-modifying treatment, those who were on treatment, and healthy controls. certain bacteria that are known to promote inflammation were found to be increased in those with MS.

another type of bacteria known to block inflammation was lower in people with MS versus controls, but higher in those who were receiving one of the MS disease-modifying treatments.

Inflammation occurs in MS when the body’s own immune cells attack the nervous system, damaging the myelin that insulates nerve fibers. Researchers are hopeful that by finding ways to reduce inflammation they may be able to limit the damaging effects of the disease. From this preliminary study, it’s too early yet to say how emerging information on the gut microbiome might impact future treatment of MS, but it’s fascinating to think that, down the road, we might affect

reSearcH on WellneSS

and MS

By Nicholas Larocca, PhD


Did you know that according to clinicaltrials.gov, there are 57 ongoing clinical trials testing a variety of therapies for progressive forms of MS? While we still wait for definitive data, some early results were presented this week.

Clinical trials of Gilenya found a consistent reduction in the rate of brain atrophy (shrinkage). Since many believe atrophy is a consequence of neurodegeneration, and in turn that neurodegeneration is probably responsible for progression, this is a strong hint that Gilenya might be able to slow down progression.

Several reports suggest that laquinimod may also be a good candidate for the treatment of progressive MS. Laquinimod might suppress the activation of microglial cells, which are the only immune cells that live exclusively inside the central nervous system. While these cells are important for protecting the nervous system from infections, overactive microglia may promote and prolong inflammation.

Another study looked more closely at previous clinical studies of laquinimod

in relapsing MS and found evidence that treatment significantly slowed progression and reduced brain atrophy even in study participants who didn’t have relapses.

Non-pharmacological approaches for slowing progression are also being tested. I learned that an herb called Curcuma longa, commonly known as turmeric, contains a compound called Artumerone. This compound can reduce the activity of microglial cells and also promote the proliferation of neural stem cells, which are the source of nervous system cells that have potential to regenerate nerves and oligodendrocytes (myelin-producing cells that are damaged in MS). Although research is at a very early stage, Curcuma longa strikes me as a very interesting candidate for the treatment of progressive MS. n

reseArCHUnderstanding Progressive MSBy Bruce Bebo, PhD

on august 15, 2014 the national MS Society announced that the Fda had approved Plegridy, the 11th disease- modifying treatment for people with relapsing forms of MS. the injectable therapy maintains the effects of interferon in the body for a longer period of time, allowing for less frequent dosing. Plegridy became available by prescription in mid-September.

“We are very pleased that research efforts continue to yield more therapy options for people living with MS,” said chapter President carrie nolan. “the Society’s annual $50+ million investment to support 380 research projects globally has played a significant role in moving MS from being an untreatable disease just over 20 years ago to now having 11 therapy options available today. this couldn’t occur without the unwavering support of communities across colorado and Wyoming, and the nation, and the dedicated momentum of the national MS Society.

“While there has been marked progress, there is still much work ahead to defeat this disease. the Society has a concerted focus to find treatments to stop progression of MS and reverse nerve damage caused by MS. With numerous clinical trials underway and continued momentum, we look forward to more therapies becoming available and reaching our ultimate goal of a world free of MS,” nolan emphasized.

Fda aPProveS 11tH MS tHeraPy

MS by altering our internal bacteria.

è Dancing with MSWe are becoming more aware of the diverse paths toward finding solutions for everyone with MS—even salsa dancing! Mandelbaum, lo and colleagues (Providence, r.i.) reported on a study in which they enrolled eight people with MS in a four-week salsa program. individuals participated in dance sessions twice a week. Dancing resulted in significant improvements in gait and balance both right after the program and in a three-month follow-up. the national MS Society is now funding dr. lo of

this team to conduct a larger study that may lead to more widespread use of dance as physical therapy for people with MS.

Open Enrollment is underway and it is time to evaluate your 2015 options for health insurance.


The Chapter congratulates Elisabeth Arenales, Esq., health program director at the Colorado Center on Law and Policy, who recently received two prestigious advocacy awards: the Colorado Health Foundation’s John K. Iglehart Award which honors a community member for leadership in advancing health care for Coloradans and the Colorado Medical Society’s Tip of the Spear Award for her leadership on the development of the Colorado Commission on Affordable Health Care.

Throughout her career Elisabeth has been an advocate for low income and underserved Coloradans, helping them move toward economic security and self-sufficiency. Access to health care is a significant part of that endeavor and her forceful voice has led to increased access and expanded coverage.

In addition to her advocacy efforts, Elisabeth knows firsthand the impact of living with a chronic disease and the financial impact of needing high-cost specialty drugs to maintain health.

Fourteen years ago Elisabeth was diagnosed MS following a fender bender. Although she had noticed odd sensations when walking and increased sensitively to heat, she had no idea her body was harboring a chronic health issue until she had an MRI related to her accident. She suddenly found herself faced with a significant and unexpected financial decision—could she afford the high-cost MS medication that allows her to work and maintain best possible health? In her case, she could, although it has sometimes been hard, but the cost of MS specialty medications can be an insurmountable obstacle for many.

To help change the cost structure related to specialty medications, Elisabeth stressed the importance of people sharing their health care stories. “The health care environment remains dynamic. Now is the time people need to step up, advocate on their behalf, and share the added burden that the high

cost of specialty medications cause. As health policy conversations continue, it is critical that people have their voices heard by the policy makers who will determine future health plan costs and coverages,” she emphasized.

What Can You Do?• Evaluate your health plan design—review the benefits and the structure of your plan, particularly the area of your out of pocket costs. • Determine if you are eligible for Drug Assistance Programs.• Contact the Chapter and share the financial impact that the high cost of specialty MS medications has had on you and your family. n

ADVOCACY

Health care plans are rapidly changing. do not assume that your plan will remain the same if you choose to automatically renew your plan. Be diligent when selecting your plan and review all-important factors, including:

• What are your out-of-pocket costs?• Is your doctor still in network?• Is your MS medication covered in the plan’s formulary?

if you need assistance to help make the

best health plan choice, the chapter has certified application counselors available to help and can recommend brokers. to learn more, contact leeann Bellum, care Management director, at 303-698-5407.

Review Before You Renew!HealtH inSurance

MS advocateour Voices Make a Difference

For more helpful healthcare resources and information:

cureMSco-wy.org

Sign up to be an MS Activist and make your voice be heard: nationalMssociety.org/Msactivist

cureMSco-wy.org 1-800-FIGHT- MS (344-4867) 9

resOUrCes

9

Medicare Part D Sign-up time!if you are on Medicare, you must sign up for Medicare Part d annually. open enrollment is underway and the deadline for 2015 is Sunday, December 7. The plan you select will begin January 1, 2015.

if you would like assistance in determining the best plan for you, contact a State Health insurance information Program (SHiiP) for assistance. volunteers and counselors are available to provide assistance and answer you questions free of charge.

Do you worry about having enough money to last your lifetime, yet find yourself thinking that financial planning is only for people who are ‘wealthy’? This is a myth and following that mindset can be harmful to your financial future.

“Financial planning isn’t about how much money you have—it’s about managing and preserving what you’ve accumulated,” said Chapter supporter Julie Gunkel, ChFC, Society of Financial Service Professionals. “Everyone has a certain level of income to live on and must deal with the functions of budgeting and paying bills. If you are on a fixed income, financial planning is crucial,” Gunkel continued.

Getting StartedGunkel said everyone should establish a budget and have the following legal documents in place:

Will: ensures your assets are distributed as you wish upon your death.

Durable Power of Attorney: allows you designate who you want to make financial decisions on your behalf if you are no longer able to speak for yourself.

Durable Medical Power of Attorney: allows you to designate a person or

persons to make medical decisions on your behalf, if needed.

Living Will: informs your family members and physician the type of medical treatment you want—or don’t want—to have when you are unable to make decisions on your own behalf.

Why Plan? When a Gift of Love Can Become a BurdenIf you anticipate receiving an inheritance, Gunkel suggests consulting with an Elder Law attorney to discuss a “Special Needs Trust.” This financial planning tool is a means to protect inheritance or other funds received and is especially important if you are on Medicaid or receiving Supplemental Security Income (SSI). If you haven’t planned, the funds received can affect your eligibility. Another benefit is that by protecting funds in a Special Needs Trust, a trustee that your select will spend the money on your behalf, for personal care, education, vacations, and recreation without impacting your Medicaid status.

During this season of family gatherings, consider having a financial planning discussion. Many times families don’t feel comfortable talking about family finances, but not having that discussion may significantly impact your future

There is no time like the present to plan for your future. n

Say yeS to Financial Planning

a guide to getting organized

organization is necessary for keeping track of financial information and paperwork. if you are overwhelmed with bills and paperwork, gunkel suggested the following organizational tips that will help to eliminate the paper chase and stress.

set up simple systems and establish a routine to use them. Visual and sound triggers can be helpful reminders.

• Purchase a wall calendar and record payment due dates. check it daily to review what needs to be done that day.

• If you have a smart phone, set the alarm to ring as your cue to check paperwork.

Purchase two accordion files.

• Label one file with months of the year and file key items that need to be addressed that month. For example, in october or november, place information received that will help you review Medicare d options.

• Label the other file 1 – 31 for days of the month. When bills come in, file them according to the date they should be paid.

For simplicity, consider setting up automatic bill paying directly from your bank account.

Find a sHiP location near you: colorado: dora.Colorado.gov/insurance/ship or call 1-888-696-9668

WyoMing: wyomingseniors.com or call 1-800-856-4398

Julie Gunkel, ChFC, Society of Financial Service Professionals

Visit cureMSco-wy.org to learn more and register.


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This month, take the time to thank the caregivers you know for the physical, emotional, spiritual, financial and/or logistical support they provide to the sick, elderly, and disabled friends and relatives. According the Department of Health and Human Services, family caregivers provide and estimated $450 billion worth of uncompensated care to loves ones annually.

Chapter care managers are available to help! If you live with MS, or care for a loved one or friend with MS, and find yourself overwhelmed by decisions, help is just a phone call away. Chapter Care Managers are available to provide

guidance, support and solutions that can make your life easier!

our Care Manages are:• Specially trained to help you apply for Medicaid, social security and disability benefits

• Certified Application Counselors who can review options and answer questions related to the Affordable Care Act and other health insurance plans• Able to connect you to resources

ranging from cooling vests to home modifications and mobility equipment• Able to guide you on work-related issues and much more. n

it's national Caregiver Month!

tHank you

To learn more or to set an appointment with a Chapter Care Manager, call LeeAnn Bellum, Care Management Director, at 303-698-5407

reSourceS For caregiverS these helpful online resources provide information, ideas and resources:

caregiverslibrary.org—national caregiver’s library provides valuable checklists and forms to help with housing, money and insurance, planning and assessment, record keeping and legal matter and end-of-life issues.

caregiveraction.org—features a toolbox, including Patient File, Medication and doctor’s visit checklists.

caring.com—caregiver Wellness Solution center is for people seeking information and support as they care for aging parents, spouses and other loved ones.

caregiver.org—Family caregiver alliance provides services, education programs and publication with needs of caregivers in mind.

caregiver.com—publishes today ’s caregiver magazine, website and conferences, and is dedicated to educating and supporting family and professional caregivers.

Upcoming topics include:► tips for people with Ms and their partners: Planning for the future: november 2014

► research in Ms Your Questions Answered: January 2015

► employment in the Presence of Ms: February-March 2015

► Managing Ms Bowel and Bladder symptoms: March 2015

► sex ed for Grownups Intimacy in Ms: May 2015

► Gender Differences in Ms: July 2015

► Preparing For Ms Doctor Visits: September 2015

the national MS Society telelearning series for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one's best life. the series provides telelearning sessions for seven different topics each year, with each topic offered on two different dates and times. each free telelearning will feature topic-area expert(s) by phone with online presentations, and a Q&a session.

Society telelearning SerieS


resOUrCes

Living in a small town in rural Wyoming can have its challenges, including access to health care. Seven years ago Lusk resident Deborah Nicholai wasn’t sure what was going on when she started to experience painful back and leg spasms. “I was also getting clumsy and having trouble doing simple things like holding a fork,” she said. When symptoms got so bad she almost couldn’t walk, her husband insisted that she see a doctor who found the brain tumor…and lesions.

Following treatment for the tumor she began taking an MS medication when another symptom surfaced—loss of vision. She didn’t have health insurance at the time, but the local senior center connected her with a resource that could help—the Colorado-Wyoming Chapter of the National MS Society.

Deborah contacted the Chapter and Care Manager Dayna Bennett made the 150-mile trip from Cheyenne to Lusk and did a home assessment. “The Chapter has been wonderful,” Deborah said. “We live in a two-story house we remodeled, but going up and down stairs was very hard for me, so I now live on the second floor. Dayna recommended having a washer and dryer installed on the second level, which has been a huge help.

“The Chapter also helped coordinate and pay for a bathroom modification – changing out my bathtub for a walk-in shower. Most of my falls have taken place as I get in and out of the bathtub and all I could think was—no more falls! This has given peace of mind, both to me and my daughter, who is my caregiver.

“Our family is so thankful for the support of the Chapter. We continue to work with Dayna and she knows if anyone else needs help, we are ready to volunteer and give back any way we can,” Deborah added. n

cHaPter aSSiStance Resources for Daily Living

WeSteRn SLoPeSupport Partners Luncheon: nov. 15

Holiday Celebration & Potluck: dec. 11

CoLoRADo SPRinGSResearch Update and Clinical Trials: dec. 5

Maintaining Balance - Support Partner Education: dec. 10

Visit cureMSco-wy.org for more information on upcoming programs in your area.

Personal trainer and chapter self-help group leader david altman has lived with MS for 39 years. His MS symptoms first appeared when he was just out of high school and had moved from his hometown to study watch repair. “in training we were on our elbows a lot and one day my little fingers went numb. I didn’t think much of it, but the next day both hands went numb, then the numbness started to move over my entire body. then i realized that i was dealing with something serious,” he said.

david was hospitalized and underwent a battery of tests. “they knew i had an autoimmune disorder, but didn’t know any more than that back in1974,” he continued. Within six months the numbness subsided and began his career with the railroad as a locomotive

engineer. Five years later he started experiencing vision problems, which ultimately led to him being medically disqualified from the railroad in 2006. At just 48 years old, David quickly knew that the was “not ready to be done.”

“I was running five to six mile miles a day, but then developed drop foot. My neurologist suggested that i work out and compete in bodybuilding. i was starting to let MS beat me when a light just went on and i decided to start training. I did a fitness boot camp for

three years and really got involved with working out.”

in 2009 david moved to denver where he continued his workout regimen in a private gym, Fit Pros. A firm believer in the benefits of exercise, nutrition and a positive attitude, he is also an international Fitness Professionals Association (IFPA) personal fitness trainer, specializing in MS. He now provides strength and conditioning, group training, weight loss, flexibility and one-on-one personal training to people living with MS and other disabilities. “i’m probably in the best shape of my life and i enjoy helping others with MS take charge and stay as healthy as possible,” he emphasized.

as proof of his passion and personal commitment to exercise, david will compete in his first Male Physique competition in october. to many though, he’s already a champion!

a PaSSion For FitneSS and training otHerS

uPcoMing eventS

GILENYA live Web events are interactive webcasts that let you talk

to medical experts and GILENYA Guides (real people on GILENYA) right from

your home. Find out if GILENYA could be right for you.

We’re online and ready to go every Tuesday (7:00 pm ET, 4:00 pm PT)

and Thursday (10:00 pm ET, 7:00 pm PT)

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The end of the year is a time to look back, reflect, and consider end of year giving options with your family. Making a gift to the National MS Society Colorado-Wyoming Chapter can take many forms, each contributing to helping family members, friends, peers and others living with MS.

Honor Someone with a tribute Gift

Make a tribute gift to recognize someone. This is an ideal way to help the Society with a gift that will never go unused or wear out and also lets someone know they are special to you.

Planned Gifts now Supportthe FutureOur planned giving society, the Lawry Circle, is comprised of people who know we must vigilantly pursue a world free of MS. Lawry Circle members create a lasting legacy and demonstrate their commitment by establishing a deferred gift for the Society through their will, trust or estate plan. Examples of

deferred gifts include stating bequest intentions in a will, charitable gift annuities, charitable trusts, designating the Society as beneficiary of a retirement account or a life insurance policy, or by the donation of a policy.

The Chapter can help ensure that your gift supports a specific area of interest to you, such as research, financial support, or area of greatest need.

Bike, Walk or MuckFest MS Participant?Consider starting your fundraising a bit earlier the season. Ask supporters for donations in lieu of giving holiday gifts or in honor of someone you participate for. Registration and fundraising tools for all events will open in November.

A Gift of Appreciated StockIf you own stock shares, you may have substantial unrealized gains that would allow you to make a gift of appreciated stock to support the National MS Society. Benefits of giving appreciated stocks:

GIVING

For more information about donating stocks and other appreciated assets [email protected] or call (303) 698-5430

1. Avoiding capital gains tax on the increased stock value2. Earning a great income tax deduction3. Experiencing the joy of helping people affected by MS with resources and research.

Always consult your financial advisor for advice on how giving appreciated stock might fit your individual circumstances.

Year end Gifts of Gratitude

Workplace GivingParticipating in the charitable giving campaign sponsored by your employer is an easy way to help us move toward a world free of ms. Find out more on Workplace Giving page:

nationalmssociety.org/Chapters/CoC/Donate/Workplace-Giving

Brent and his daughter, Danica at Walk MS

Pueblo 2014.


Congratulations to Loveland resident Joseph Flanigan, recipient of the Chapter’s 2014 Volunteer of the Year Award, presented to an individual for outstanding commitment to the Society. Joseph was selected from more than 2,000 Chapter volunteers.

Joseph has lived with MS since being diagnosed in 1989 at age 40 and has been

involved with the Society since the 1990s. After he and his wife Deborah moved to Colorado, he began volunteering with the Chapter in 2005 and has been a familiar face at our events and health fairs for many years.

“I remember my first Bike MS ride. You had to place the name of the MS person you were riding for on the back of your jersey, so I wrote ‘ME.’ During the ride, passing riders would say, “You are my hero.” After miles of hearing this, I realized the true heroes were those other riders. To me the term hero means ‘Help Everyone Respect Others.’ A way to show that respect is to share time and talent to find a cure,” Joseph continued. “I’ve volunteered and participated in many Chapter events, including Bike MS, Walk MS, Hike MS and MuckFest MS, but being an ambassador is my passion.

“If I were to state my personal mission, it would be ‘to help people connect to MS.’ Being an ambassador gives me the opportunity to generate awareness about MS and share the great work the Chapter does in reaching out and

helping individuals and families every day. The research piece is a bonus,” he said. “People think it’s a mysterious disease—and it is, even to those living with MS. When I speak on behalf of the Society, I always start by thanking the audience for their interest and then provide an example that illustrates MS as a wound so people can relate to it. It takes away some of the MS mystery. I explain that doctors provide the technical manual, the Society provides the operations manual, and each ‘MSer’ authors his or her own user manual.

“I was very surprised to be selected for this honor. There are so many well-deserving volunteers, and they are my heroes for sharing their time, talent, treasure and tenacity. To me tenacity is the most important part of volunteering —people cannot give up or quit,” he emphasized. n

VOlUNteer

JoSePH FlaniganChapter Volunteer of the Year

Thank you Joseph for being an inspirational and committed volunteer!

Volunteering with the Chapter is a meaningful way to give back. the chapter has many diverse volunteer opportunities to utilize talents and interests, and accommodate varied schedules. Make 2015 the year you step out, get involved and volunteer! For more information call Community Engagement Manager Sarah Ness at 303-698-5443 or visit cureMsco-wy.org

Want to Make A DIFFERENCE?

Successful fund-raising events, advocacy efforts, and educational and community outreach involves the contributions of countless individuals and organizations. the chapter is pleased to honor the following for their outstanding and appreciated support this year.

► CHAPteR-WiDeEvent Volunteer of the Year virginia thompsonFundraising Volunteer of the YearSheila SharpeClient Impact AwardHome Builders FoundationChapter Volunteer of the YearJoseph Flanigan

► SoUtHeRn CoLoRADoEvent Volunteer of the Year Sandy WengerPrograms Volunteer of the Year Maria rundellMission Advocate christine Payne

Community Partner koaa

► noRtHeRn CoLoRADo Flash Award david Blythin Program Volunteer of the Year randy StaulcupEvent Volunteer of the Yearthuan nguyenCommunity Partnership Awarddellenbach Family

► WeSteRn CoLoRADoWestern Slope Volunteer(s) of the Year Penny donelan Matilda (tillie) Fischer

Special Events Volunteer rodney WilsonRookie of the Year allie danielPrograms Volunteer anne Merz

► WYoMinG Bike Volunteer of the Yearcasper Ski Patrol

Walk Volunteer of the Yeargillette rotary

Community Partnership of the YearPepsi

Mission Advocate Jeri Spoonmore

2014 Volunteer Recognition


Your voluntary tax contributions can change lives.

OF NOte

5280 Dines 2014: Thank you to our friends at 5280 for a great event that raised $10,000 for the chapter!

MS shouldn’t stand in the way of an education. this is why the national MS Society's scholarship program exists to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college.

nationalMssociety.org/scholarshiplearn more and apply today:

This year the Chapter must raise $75,000 in donations or another charitable organization will take our place on the tax return! Please help us reach our goal. Voluntary contributions to the Colorado Multiple Sclerosis Fund provide comprehensive programs and support services for people living with MS in Colorado and Wyoming.

2014 toP event FundraiSerS

tax season

$10 makes a difference. Make a voluntary contribution to the Colorado Multiple Sclerosis Fund.

Tell your tax preparer that you want to contribute to the Colorado Multiple Sclerosis Fund.

Tell your friends!

1

2

3

RethinK

ending MS.your tax return

You can help. it all adds up!

there's a connection between

Walk MSindividual lesley Osen $102,000

top corp teamthe Clinic Colorado $80,025

top F&F teamBunion Bunch $123,829

Bike MSco individual tim Beaudin $148,200

Wy individual lesley Osen $101,446

top corp teamleft Hand Brewing $266,079

top F&F team

rawHinies $377,724

Hike MSindividual Julie Brubaker $18,515

top Hike teamCUreageous stampede $19,605

MuckFest MSindividual Ali McGreal $8,587

top MuckFest teamGreatest show on Dirt $26,534

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

Stay connected cureMsco-wy.org

1-800-FIGHt-Ms (344-4867)

24 HoURS to GiVe WHeRe YoU LiVe.

Colorado Gives Day is Tuesday, December 9 this year! Join your neighbors in this special day of giving.

Mark your calendar to support the National MS Society Colorado-Wyoming Chapter

coloradogives.org/nationalMSsociety

Documents

Fall 2014 MS Connection Newsletter