MS Connections Newsletter Winter 2015

Winter 2015

National Multiple Sclerosis Society

MS Connection Newsletter

Colorado-Wyoming Chapter

Colorado-Wyoming Chapter

MS Awareness Week March 2-8

pg. 7

RETHINK Tax Season pg. 15

INSIDE THIS ISSUE:

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8 - 11

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14

WHY WE WALK

Progressive MS Research

CAREGIVER STORIES

DIY FUNDRAISING

Letter From the President Dear Friends, The snow may be falling, but the chills of winter have not dampened our spirit or resolve to make 2015 another exceptional year. Our Chapter is presenting valuable educational and wellness programs, monitoring legislation so the voice of the MS community is heard, and stands ready to launch a series of premier fundraising events this spring that will expand awareness and engagement to benefit everyone affected by MS in our Chapter.

Last year was marked by many achievements, including milestone fundraising, which allowed us to contribute a record $1.7 million to support 380 Society research projects worldwide. In this issue you will read about some of the exciting progress this research yielded in the areas of stopping MS, which included FDA approval of the 11th and 12th treatment options for relapsing forms of MS; restoring what’s been lost, by targeting nervous system repair; lifestyle and wellness endeavors to improve mind and body functions, and assess potential risk factors; and ending MS forever through cutting-edge genome studies.

Also tackling the specific challenges of progressive MS, the Society joined with 10 MS organizations worldwide to form the International Progressive MS Alliance, which connects global resources and experts to share knowledge, speed development of treatments to manage symptoms and end progressive MS. The Alliance recently awarded its first

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Newsletter Distribution—If you have a change of address or would like to receive MS Connection electronically, please call 800344-4867.

round of research grants, funding 22 projects, and will invest $30 million to tackle progressive MS over the next six years. It does ‘take a village’ and these grants were made possible thanks to global funding for the first time.

This summer marks the 30th year for Bike MS Colorado and significant progress has taken place since that first ride. We look forward to sharing more exciting research developments in 2015, which continue to make this is a hopeful and optimistic time.

I encourage you to take every opportunity to connect with your Chapter throughout the year. Share Society news, accomplishments and goals, and invite others to become involved.

As we move forward, I'm interested in hearing about your connections and ideas to make your Chapter even stronger. Please let me know your thoughts—I'm here.

Sincerely,

Carrie H. Nolan

President carrie.nolan@nmss.org 900 S. Broadway Suite 250 Denver, CO 80209

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

The NMSS does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information.

The NMSS assumes no liability for the use of contents of any product or service mentioned. Information provided by the NMSS is based on professional advice and expert opinion. Information provided in response to questions do not constitute therapeutic recommendations or prescriptions. The NMSS recommends that all questions and information be discussed with a personal physician. The NMSS is dedicated to a world free of MS.

©2014 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 Richard Raymond, MD Shauna Giddings Schmitz Jo Wilson Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage

MS connection: WINTER 2015

IN THE NEWS EVENTS Kim, diagnosed in 1986

Connect to the Information you need

The National MS Society telelearning program for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one’s best life with MS. Each free telelearning features topic-area expert(s) by phone with online presentations and Q&A session.

MS and Employment

February 26, March 12 & 26

Managing MS Bowel & Bladder Symptoms March 17 & 19

Sex Ed for Grown-ups – Intimacy in MS May 19 & 21

Gender Differences in MS July 21 & 23

Preparing for MS Doctor Visits September 15 & 17

Learn more and reserve your spot at

nationalMSsociety.org/telelearning or call 1-800-344-4867

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

NEW BOARD MEMBER

Darrin Johnson

Darrin Johnson is the South West region controller, SEFNCO Communications, Inc., a telecommunications construction contractor that specializes in the design, construction and maintenance of communication networks and infrastructure for public and private sectors.

Johnson has more than 15 years experience in financial management and construction industry leadership and is responsible for all operations of the company’s South West regional accounting department located in Centennial, Colo.

He is a past president of the Construction Financial Managers Association, Colorado Chapter and served on its board of directors for 10 years. In 2008 he was honored as the Chapter’s General Member of the Year.

Johnson is also a member of the Rocky Mountain Region Board of Directors of INROADS, Inc., a nonprofit organization that develops and places talented diverse youth in business and industry to prepare them for corporate and community leadership. He was named INROADS Volunteer of the Year in 2010 and 2012, and received the organization’s Trailblazer Award in 2014.

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EVENTS

YEARS

Colorado’s Ride

First Bike MS Team Hits $2 Million Milestone Congratulations to the Raw Hinies, the Chapter’s first Bike MS team to surpass $2 million in cumulative fundraising!

The team was formed in 2004 to show support for family members of Jennifer Sales who were living with MS. That year the 16-member team raised $36,100. In 2014 the team fielded 158 riders and raised nearly $378,000, which took them over the $2 million mark.

Team Captain Jennifer Sales credits the team’s success to keeping it fun, developing great friendships and maintaining a strong focus that they ride to stomp out MS!

It’s time to get in gear, recruit team members and train for Bike MS Colorado, one of the state’s most popular cycling events. This year marks the 30th time supporters have saddled up and pushed their treads along a 150mile course to end MS while enjoying great scenery, camaraderie and making an impact along the way.

Register Today:

bikeMScolorado.org • bikeMSwyoming.org

Tips for Starting or Growing a Team There is no time like the present to get moving and organize a 2015 Bike MS team! Whether you have a team and want to expand it, or are interested in starting a first-time team, these tried and true tips for success can help pave the way.

Communicate • Start a Monthly Newsletter

and volunteer opportunities so they can begin to be part of the experience.

Invite someone from the Chapter to talk about the ride and its mission.

• Lunch and Learn

If you are interested in starting a corporate team, contact the Chapter to set up a lunch and learn session at your workplace.

• Coordinate Training Rides These develop endurance and friendships.

Keep it short, but full of important and motivational information. Announce the team goal, share recruitment ideas, introduce new members and recognize team members for engaging new riders or hitting a training or fundraising goal.

• Create a Team Jersey

Get Social and Have Fun • Host a kick off party

Make it a Meaningful Experience • Keep your team focused on the

Gather team members and ask everyone to invite a potential new rider. Encourage team members to ask others in their networks (e.g. civic organizations, work peers, neighbors, PTA) to join the ride.

If people are interested, but not ready to take on the150-mile course, let them know about our shorter route options

4Tracey, diagnosed in 2005

This event has grown through the years and in 2014 a record $4 million was raised! Today, Bike MS Colorado remains the Society’s third top fundraising ride in the nation. Your support has made a difference – since the ride’s inception treatments for MS have increased from zero to 12 thanks in part to every mile ridden. n

Stand out and take pride in your team.

• Host a Team Tent Reserve a team tent at the overnight celebration where members can meet, swap stories and relax together.

reason they ride – each mile pedaled and dollar raised helps more than 100,000 people affected by MS in Colorado and Wyoming and brings everyone closer to a world free of MS!

To learn more, contact: 303-698-5439 katherine.miller@nmss.org

MS connection: WINTER 2015

EVENTS

New This Year!

Sign Up Early and Save!

This year registration fees are tied to the number of registrants signed up verses hard dates. Registration was just $69 for the first 1,000 registrants, which quickly filled. The second sign-up tier is now open and offers a $79 registration fee for the next 1,000 cyclists. The fee will increase to $89 for the final 1,000 riders. Don’t wait – save!

Rider in Training Jersey!

If you raise $200 within 30 days of signing up for the ride, you will receive an exclusive long sleeve “Rider in Training” T-shirt!

Recruit for Rewards!

Now is the time to recruit friends and peers to ride with you this year. If you know someone who has never ridden - or someone who used to participate and may be ready to go the distance for MS again - invite them to join your team and register. When they sign up you will receive bonus prize points!

Rookie Rider Series Dates:

Rookie Rider Series

Fundraising April 8

These helpful sessions provide a wealth of information for team captains and riders new to Bike MS Colorado. Each session covers a specific topic and is held from 6 – 8pm in the Snowmass conference room at the Chapter’s Denver office:

Bike MS 101 & Team Captain 101 March 11 Social Media/Online Tools and Participant Center March 25

Crash Course on Safety & Training April 22 RSVP: 303-698-7470 ext. 1

Don't miss out on Bike MS goodies!

Mark your calendars today!

Bike MS 2015

Volunteers Needed

Did you know that it takes more than 750 volunteers to support the over 3,000 riders during the Bike MS Colorado and Wyoming rides?

There are plenty of opportunities to get involved as a volunteer and feel a part of this awesome event that raises over $4 million for the Chapter. Check them out and register today by visiting Bike MS Volunteer Registration and Information at cureMSco-wy.org and click on Bike MS, then click on 'Volunteer" for descriptions of volunteer positions!

To learn more, contact Sarah Ness at cowyvolunteer@nmss.org or 303-698-5443.

Save these Dates Walk MS

Bike MS

Denver

Glenwood Springs

Cheyenne

Bike MS Colorado

Grand Junction

Boulder County

Cody

Fort Collins Loop

Northern Colorado

Laramie

Gillette

Bike MS Wyoming

Pueblo

Southwest Wyoming

Colorado Springs

Casper

May 2 May 2 May 9 May 9

May 16

May 16 May 16

April 18

May 30 June 6

Sept. 12

June 27 – 28 June 27

August 15 - 16

May 2 May 9

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

muckfestMS.com Larkspur, CO | May 16

hikeMS.com Keystone Resort | July 25

5

EVENTS

"You have to have humor, faith and keep fighting it."

Walk MS

Why We Walk Felisa Weatherall was used to busy, stressful days. She worked as a scheduler and supervisor of transport with RTD, held another part time job, and was raising two children. In early 2007, when her vision became inflamed and blurry, she thought she had pink eye. The symptoms subsided, but by August she was having problems walking. “I knew something was going on, but thought it was a pinched nerve, or worse, a stroke,” said Felisa. “I had an MRI and one day before by 37th birthday, I got the call that I needed to see my doctor because I had something called MS.” “I didn’t know much about MS, but I got very emotional because I’d had an aunt who had passed away from MS complications in the 1970s. I was in denial and kept trying to find other diagnoses.

“About the same time I learned a cousin had been diagnosed MS and I got on

NEW TRAINING

Become an MS Ambassador If you enjoy meeting people and want to help raise community awareness of MS and support for the Society, become an MS Ambassador. These special volunteers represent the Colorado – Wyoming Chapter at speaking engagements, health fairs, community events and other venues.

To become an ambassador, all you need to do is attend a training session where you’ll meet others and enjoy refreshments as you learn more about the Society, Chapter programs and resources, the latest MS news, and the do's and don'ts of public speaking.

By investing less than two hours of your time to become an MS Ambassador,

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it. I connected with the National MS Society and found an African-American support group – the Park Hill Steppers.

I did my first Walk MS Denver in 2008 and was shocked. I had no idea that so many people were affected. The walk really affected me emotionally, but when I crossed the finish line, there was this wonderful feeling that I’d made it!

“I starting going to seminars, took the Chapter’s newly diagnosed course and became a peer counselor. While I learned more about MS and its affects, I was also learning more about MS within my family. After my mother’s passing

we found medical papers indicating that she had MS, but it was dormant.

We never knew! Then another aunt, middle sister, little sister and possibly an uncle were diagnosed. I never imagined that my Walk MS list would grow so long.

“I look forward to Walk MS every year – even when I have to use a walker or wheelchair - because it keeps people going and helps the Chapter provide supportive services that have helped many others and me. You have to have humor, faith and keep fighting it. As long as you have the ability to walk for yourself, a cousin or others, do it, because Walk MS helps everyone." n

Sign-Up Today! walkMScolorado.org walkMSwyoming.org

you can help create connections and generate awareness that will make a difference for everyone living with MS.

Training Schedule Denver Tuesday, March 31 | 6 – 7:30pm Southern Colorado Tuesday, March 24 | 6 – 7:30pm Northern Colorado Thursday, March 26 | 6 – 7:30pm Western Slope Time and location to be determined Wyoming Thursday, March 19 | 6 – 7:30pm To learn more and register, contact: 303-698-5443 sarah.ness@nmss.org MS connection: WINTER 2015

ADVOCACY

MS AWARENESS WEEK March 2-8, 2015

MSconnection.org

¡Conectar!

Cafe Con Leche Dr. Allen Bowling: MS Book Tour In addition to conventional medicine, many people with MS also use some form of alternative medicine - and there is growing evidence and interest in the effects of lifestyle factors, such as diet and exercise, on MS. Until now, it has been difficult to obtain unbiased and practical information about the MS-relevant aspects of these non-medication approaches.

Learn about these topics from an expert when nationally renowned neurologist and MS specialist Dr.

Allen Bowling presents fascinating information from his newly released book, “Optimal Health with MS: A Guide to Integrating Lifestyle, Alternative and Conventional Medicine.” Dr. Bowling is the Medical Director of the MS Service and Director of the Complementary and Alternative Medicine Service at the Colorado Neurological Institute.

Dr. Bowling is also Clinical Associate Professor of Neurology at the University of Colorado – Denver and Health Science Center.

"Optimal Health with MS: A Guide

to Integrating Lifestyle Alternative and Conventional Medicine " Grand Junction March 3, 2015 | 6:30pm

Fountain March 7, 2015 | 12:30pm

Barnes and Noble

Fountain Library

Boulder March 5, 2015 | 6:30pm

Fort Collins March 9, 2015 | 6:30pm

Barnes and Noble

Council Tree Library

Denver March 6, 2015 | 6:30pm

Cheyenne March 11, 2015 | 6:30pm

Colfax & Elizabeth St.

Laramie County Community College

Tattered Cover

Day at the Capitol

Chronic Disease Awareness Day

This year, the advocacy day will include all member organizations of the Chronic Care Collaborative, and will not be MS specific. The idea is that all members of the chronic

disease community can come together and advocate as one unified voice.

Constituents from each organization will see they are not alone in the challenges they face!

Watch the legislature in session and visit with your legislators.

Thurs. March 5, 2015 at 7:45am 200 E. Colfax Ave. Denver, CO 80202

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

Grab a cup of coffee and dial-in to participate in this free monthly MS telephone group held entirely in Spanish. Callers affected by MS can discuss areas of concern and share experiences. MS experts also speak about important MS care topics. The group is open and new participants are welcome. l

2015 Schedule:

Calls takes place from noon-1:30pm • February 10 • March 3 • April 14 • May 12 • June 9

Wyoming Proclamation Signing with Governor Mead March 2 | 11:30am 24th & Capitol Ave. Cheyenne, WY 82001 Please Contact: 307-433-9590 or molly.palmer@nmss.org

Paint it Forward March 5 | 7-9pm Pinot’s Palette, Ft. Collins Support the National MS Society while painting a masterpiece with cocktails and great company. No art experience required. $40 per person includes instructor, 16X20 canvas, all painting materials and aprons. Drinks available for purchase.

Western Slope Open House March 2 | 11am - 3pm March 4 | 10am - 3pm Grand Junction Office 521 Rood Ave., Suite B Grand Junction, CO 81501

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RESEARCH myelin repair. A clinical trial stemming from this approach is now underway. £ 15 projects are exploring various types of stem cells, including cells derived from bone marrow, fat and skin.

Great Strides

Research Dollars at Work Last year the Society invested $52 million to support 380 projects worldwide, which led to a better understanding of what is causing MS damage and progression. Research progress in areas of stopping MS, nervous system repair and lifestyle/wellness efforts continued to build the knowledge needed to help people living with MS today and to end MS Forever.

2014 Research Highlights

serum early in the course of MS may be predictive of later disease activity and progression.

Stopping MS £ The FDA approved two additional

therapies - Plegridy and Lemtrada adding to the arsenal of options available to treat relapsing MS. There are now 12 therapies to treat this most common form of MS.

£ A team shed new light on immune cells, known as macrophages, discovering a way to tell the difference between good and bad types of these immune cells during MS-like disease in mice. If it holds true for people with MS, this opens up possibilities for therapies that target bad cells and spare good cells. £ The International Progressive MS Alliance awarded its first round of research grants, funding 22 projects, and will invest $30 million to tackle progressive MS over the next six years. £ An international team funded by the Society found that levels of vitamin D in

STOP.

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RESTORE.

END.

£ A multicenter study showed that African Americans with MS were found to have more visual impairment and faster thinning of the nerve fibers in the back of the eye than Caucasians with MS. £ The Society partnered with Glialogix, Inc. to advance an oral form of a neuroprotective therapy for progressive MS. £ Researchers in the U.K. found that for every year that passed after a person with MS stopped smoking, the risk for progression was reduced by as much as five percent. Previous studies suggest that smoking can increase the risk of getting MS and the risk of progression.

Restoring What’s Been Lost

£ Researchers identified compounds approved by the FDA for various disorders that might also stimulate

£ A team of researchers derived stem cells from the skin of people with primary-progressive MS and induced them to become myelin-making cells. The cells repaired myelin when transplanted into mice; the potential for use in people with MS remains to be seen. £ Researchers pinpointed an area of the brain with reduced tissue volume that was linked to high levels of depression. £ A clinical trial showed strong evidence that a specific type of memory training improves learning in people with MS and benefits other aspects of quality of life.

Ending MS Forever £ In studies involving more than 80,000 people, the International MS Genetics Consortium has now identified more than 159 genetic variations related to MS. £ Researchers developed a new approach to understand how subtle changes in genes may lead to the risk of developing MS and other immune diseases The study maps out a strategy for tracing the influence of genes on cell activity, promising new insights for interrupting the MS disease process. £ The Society continued substantial support of a DNA Bank at the University of California at San Francisco, which links to a sophisticated database of clinical, demographic and lab data and is key to the search for MS genes, biomarkers and new therapies.

For a full summary of research progress that took place in 2014, visit nationalMSsociety.org and click on ”Research News & Progress” for the December 4, 2014 Strides Made in 2014 Toward a World Free of MS. MS connection: WINTER 2015

RESEARCH

Understanding 12th Therapy for Relapsing MS Approved In November 2014 the FDA approved Lemtrada, the 12th disease-modifying therapy for people with relapsing forms of MS. Lemtrada an intravenous infusion therapy and its use is generally reserved for people who have had an inadequate response to two or more other MS therapies because of its safety profile.

The decision to use Lemtrada requires a multi-year commitment.

The initial treatment is administered for five consecutive days and is followed by another threeconsecutive-day treatment one year later. Strict monitoring takes place during the two-year course of treatment, and an additional four years of monitoring continues after the infusions have concluded.

“The approval of Lemtrada provides an important and immunologically powerful new therapeutic option for people with relapsing MS,” said Bruce A. Cohen, MD, professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and chair of the National MS Society’s National Medical Advisory Committee. “Its long-lasting effects may profoundly influence the course of relapsing MS, but will require careful and sustained monitoring for side effects, which people receiving the medicine must follow. Individuals with MS who are considering treatment with this medicine should thoroughly educate themselves on its potential benefits and risks,” he added.

MS Genetics Research How Genes Interact Dr. David Hafler (Yale University) launched the discussion about genes and MS when he delivered the keynote lecture during the opening ceremony. He was the founder, with other researchers, of the International MS Genetics Consortium, a team that has turned MS genetics on its ear. “Virtually every MS geneticist on earth is working together,” he declared and spoke eloquently about where we are in the search for MS genes. He noted that there will likely be hundreds of MS risk genes uncovered eventually. “Each [gene] by itself has a small effect on disease risk; but each interacts with the environment,” he noted. “These are not bad genes, and it’s not a bad environment – it’s a bad interaction.”

Mapping MS Susceptibility Dr. Philip De Jager (Harvard), recipient of the 2014 Barancik Prize for Innovation in Research, presented the Consortium’s latest findings – a replication of its pivotal genetics study, published in Nature Genetics (online, September 29, 2013), that identified 48 new genetic variants associated with MS based on data gathered from 30,000 people with MS and more than 50,000 controls without MS. Gene research is grueling – data from thousands of people with and without MS need to be gathered in massive numbers, and then all those data must be replicated. Dr. De Jager announced that after studies involving over 80,000 people, they now have identified more than 159 genetic variations related to MS, and more importantly, have begun to identify the specific immune cells and proteins involved, and how much weight each one carries.

“We have created a reference map of MS susceptibility,” said Dr. De Jager. “Now we turn to the task

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

of understanding the biology of MS susceptibility.”

Exploring Differences Dr. Noriko Isobe (University of California, San Francisco) and the Consortium reported on how genes differ between African Americans and Caucasians with MS, following up on a 2013 study published in Neurology (online, June 14, 2013). Eight novel genes were identified among African Americans with MS that were not uncovered in the larger gene scans. We’ve seen that the experience of African Americans with MS is different from that of Caucasians, and this study is putting us on the road to finding out why.

Genes and vitamin D Dr. Jennifer Graves (University of California, San Francisco) and the Network of Pediatric MS Centers reported on findings from an ongoing study led by investigators nationwide of what triggers MS in children. They showed that vitamin D status, which has been linked to MS risk, was associated with MS relapses only if children have a specific immune gene. The original study included 185 kids, and this group is collecting data on hundreds more.

Trials of vitamin D supplementation are ongoing, so I’m hopeful that future findings will show who may be helped most by this strategy. n

Sign up for MS eNEWS: nationalMSsociety.org/ signup.event

9

RESEARCH

While today there are still no concrete guidelines on how a woman with MS should be guided through pregnancy, enough data has been gathered that the following recommendations were presented:

for 6 to 12 months before trying to conceive. Your doc may want to put you on Tysabri for that time (although this may increase your risk that you will have a relapse when you stop). Other approaches are pulse steroid therapy, where a woman is given Solu-medrol when she is menstruating (knowing she won’t conceive during this time), then trying to conceive during the following month.

Before Trying to Conceive:

When trying to conceive:

• It is important to discuss with your doctor and your family the impact that MS will have on your ability to parent and the support system that you can call on. In addition, many people are very anxious that they may pass MS along to their children. To clarify this risk: If just one parent has MS, the risk is still very low (about 1-2 percent) that the child will develop MS.

• It is very important that you get pregnant as soon as possible after you stop your disease-modifying therapy.

One recommendation is that women practice methods for predicting ovulation (taking basal temperature, monitoring cervical mucus, etc.) before stopping meds, so they know when their optimal times for trying to conceive are. If you do not get pregnant within 3 to 6 months, your doctor may recommend that you seek fertility treatment (as opposed to waiting the usual 12 months).

The Latest on

Pregnancy & MS

• If you are on a disease-modifying therapy, ask your doctor what the recommended “wash out” period (a period of time without active treatment) is for your medication.

Based on data, many doctors are recommending a very short amount of time before trying to get pregnant.

Importantly, it is recommended that men on mitoxantrone and teriflunomide also stop these meds before trying to father a child.

NOTE: Please talk to your doctor about when to stop your meds, as different medications carry different recommendations.

• If you are having relapses, it is recommended to try to stabilize them

While pregnant: • If you get pregnant while taking disease-modifying therapy, DO NOT PANIC! Data shows that most of disease-modifying therapies do NOT increase the risk of miscarriage or birth defects. If you become pregnant while on one of the MS medications, immediately contact your doctor to find out what he or she recommends.

• If you have a relapse during pregnancy, you can be treated with Solu-medrol or IVIG, as these do not appear to present any danger to the baby.

After delivery • Be aware that women with MS are at a higher risk for postpartum depression. If you feel sad or have little interest in your newborn, seek professional help.

• If a woman has not had a relapse in the year before getting pregnant (or during pregnancy), she can breastfeed.

A recent meta-analysis showed that women who breastfed had slightly fewer relapses.

• If a woman had high disease activity before getting pregnant or during pregnancy, it is recommended that she begin taking MS medication within 10 days of delivery.

Your neurologist should be a partner when you are considering trying to start or expand your family, with the goal of making sure that you have the safest pregnancy possible for you and your child. n

Pregnancy and MS - Kara's Story MS Learn Online is the National MS Society's online educational webcast series. Visit youtube.com/nationalMSsociety to watch this video discussion about pregnancy and multiple sclerosis.

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MS connection: WINTER 2015

RESEARCH

The Role of Microglia A type of immune cell called microglia, which is widely believed to exacerbate chronic adult brain diseases such as multiple sclerosis, might actually slow the progression of neurodegenerative diseases, according to new research. The research was led by Dr. Bruce Trapp, chair of the Department of Neurosciences at Cleveland Clinic’s Lerner Research Institute, and was published in Nature Communications in July 2014.

“Our findings suggest the immune system protects the brain after injury or during chronic disease, and this role should be further studied,” Dr. Trapp says. “We could potentially harness the protective role of microglia to improve prognosis for patients with traumatic brain injury and delay the progression of Alzheimer’s

disease, MS and stroke. The methods we developed will help us further understand mechanisms of neuroprotection.”

How microglia work Microglia are primary responders to the brain after injury or during illness. Dr. Trapp’s team used an advanced technique called 3D electron microscopy to visualize this activation of microglia and subsequent events in animal models.

They found that, when chemically activated, microglia migrate to inhibitory synapses, which are the connections between brain cells that slow the firing of impulses. Microglia then dislodge the synapse, thereby increasing neuronal firing and leading

to a cascade of events that enhance survival of brain cells.

Dr. Trapp’s past research has included investigating the causes of neurological disability in people with MS, the cellular mechanisms of brain repair in neurodegenerative diseases and the molecular biology of myelination in the central and peripheral nervous systems. In 2009, he received the National MS Society’s 2009 Stephen C. Reingold Award and, in 2013, he was inducted into the Society’s Volunteer Hall of Fame for Scientific Researchers. He also received the John Dystel Prize in 2003, awarded jointly by the Society and the American Association of Neurologists to recognize outstanding contributions to the field of MS research. n

Call the Colorado Medical Exemption Program at 303-698-5409 to find out more.

Hurry! The deadline for application submission is May 1.

Take the heat off your budget this summer!

Xcel Energy offers a discounted summer electric rate, rate, through throughthe theColorado ColoradoMedical Medical Xcel ExemptionProgram Program(CMEP), (CMEP), to to qualified, qualified,customer customerhouseholds householdswith withmedical medicalneeds. needs.

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CMEP is an availableinincommunities communitieswhere whereXcel XcelEnergy Energy CMEP an energy assistance program available electric service service isisavailable, electric available, and and isisoverseen overseenbybythe theColorado-Wyoming Colorado Chapter Chapter of the of the National Multiple Sclerosis Society. help manage your energy budget National Multiple Sclerosis Society.

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1/28/15 3:02 PM

11

RESOURCES

CareGIVER STORIES

From Caregiving Support to Happily Ever After As executives at solar energy societies in Texas, Richard and Natalie had become acquainted through annual conferences and special events that promoted their common commitment to sustainable energy resources. Little did either of them know that a disease called MS would cross their paths, uniting their futures.

Literally full of energy, Natalie was also managing a ‘green’ hotel when she began to experience severe neck and shoulder pain that wouldn’t subside.

Three months into pain management treatment an MRI finally revealed the source of her symptoms. At age 41 she was diagnosed with MS. “Looking back I’d had other symptoms such as daily falls, which was a missed opportunity to be diagnosed. While I was relieved to know there was a legitimate reason for my pain, I didn’t really know what to expect until six months later when cognitive difficulty and more challenges with balance and walking set in and I needed help,” she said.

Richard was surprised when he received a notification asking friends and peers if they were willing to provide caregiving support Natalie. He immediately signed up for a week, which involved taking Natalie to physical therapy appointments and speaking engagements, running errands and waking her dog. She welcomed his support, and quickly realized another life change was unfolding - she and Richard had fallen in love.

“The last thing on my mind was a romantic relationship, but MS allowed us to know each other on a personal level. With Richard I found a life worth fighting for in a way I had given up on,” Natalie said.

The couple moved to Colorado in June 2013 for the cooler climate and that fall they tied the knot. Natalie is doing well thanks to one of the oral

The last thing on my mind was a romantic relationship, but MS allowed us to know each other on a personal level. therapies available. Still committed to sustainable energy, she and Richard live in a solar/thermal home, but her work is now dedicated to staying healthy.

“I like to remind others, and myself, how we never know what's in store when the Universe shuts a door. I often wonder what my life would be like without MS. When I think honestly, that would mean I would not "have" Richard as my husband and best friend. I'll keep the MS and him. I can imagine my life without MS, but not without Richard!”n

We are here to help you live your best life. Connect to our resources and support : cureMSco-wy.org

Chapter Honors Caregivers Last fall the Chapter asked MS clients for the names of caregivers they would like the Chapter to recognize during National Caregiver Appreciation Month in November. In response, more than 80 caregivers were honored with a thank you letter and treats for the unwavering care they provide to loved ones and friends.

Family caregivers are the foundation of long-term care nationwide and each year more than 65 million people, 29 percent of the U.S. population, provide care for a chronically ill, disabled or aged family member or friends and spend an average of 20 hours per week providing care according to the National Family Caregivers Association.

Take time to thank a caregiver – it goes a long way!

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MS connection: WINTER 2015

RESOURCES

Unspeakable Symptoms

It's Just My MS Fatigue, balance problems, vision impairment sensory issues, and tremors are some of the common and frequently discussed symptoms associated with MS. Other symptoms involving emotional changes, or the loss of body functions such as bladder or bowel control, can also surface and lead to embarrassing situations. While you may be tempted to make excuses or try to ignore these symptoms because they are uncomfortable to discuss or accept, there are actions you can take that will help. Understanding what you are experiencing is the first step.

Varying emotional states, such as feelings of depression, mood swings resulting in bursts of anger or rage, anxiety, or inappropriate emotional reactions to situations, may also stem from MS damage to the nervous system. Often there is a level of relief when you can simply put a name to what is occurring. For instance, uncontrollable episodes of laughter or weeping at an inappropriate time, such as crying while watching a TV commercial, may be the result of a condition known as affective release or pseudo-bulbar affect, which is

treatable. The onset of inappropriate sexual talk or behavior, known as disinhibition, can also be managed.

Feelings of depression can impact both the person living with MS and the caregiver, and can range from having “the blues” and feeling down for a short period of time to longer term episodes involving ongoing sadness or irritability, loss of interest in everyday activities, loss of appetite, and/or sleep disturbances. Be aware and take note of the changes and the duration that these feelings persist.

The loss of control of bladder and bowel functions can also result in humiliating situations. Incontinence and bowel incidents can occur when urinary and bowel system nerves are affected and stop working properly. A variety of treatments are available to prevent embarrassing accidents and ease the impact of these body changes.

UPCOMING PROGRAMS Denver Metro

Southern CO

Managing MS Bowel and Bladder Symptoms March 17 & 19

Northern CO

Mood & Cognition in MS April 21

For more information, check out our online calendar:

Advanced Planning and Hospice Workshop February 26 Comedy Night and Events Kick-off March 11 ChariTEA Happy Hour with MS Society Staff April 24 | 5–7 pm

Family Night and Events Kick-off Sky Sox Game April 9

Teleconferences MS and Employment February 26 March 12 & 26

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

cureMSco-wy.org

As with any symptom, reaching out and seeking help is the best course of action. Take charge and have an open, honest and direct conversation with your doctor. Describe what is happening in detail and with the facts in hand, your doctor can often make a diagnosis and prescribe treatments and/or resources that can help. It may be hard to discuss uncomfortable changes occurring, but the outcome will be worth it for everyone. n

Make the Chapter Your First Call for Help, Information and Resources If you are not sure where to turn for help to address the challenges of MS, call the Chapter. We are your Society and have a professional staff that is able to provide assistance for a wide range resources. Whether seeking respite resources for a little time off from caregiving, a home safety evaluation, assistance with home or vehicle modifications, adaptive recreational resources, disability guidance, health insurance evaluation, or a physician referral, the starting point is just one call

1-800-FIGHT-MS (344-4867)

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GIVING MS doesn’t get your heart pumping, join us DIY folks and create your own event!” he says. “Your enthusiasm will be infectious, and I find people always seem happy to give to a good cause.” n Originally published in the Pacific South Coast MS Connection newsletter.

WAYS TO GIVE

Swimming with Sharks Thousands of people across the United States are using their creativity and talents to forge unique Do It Yourself (DIY) fundraising events that raise awareness and critical funds in support of life-changing programs for people with MS and cutting-edge research.

Last summer, devoted husband Keith Padien joined them.

“My wife Christina was diagnosed with MS shortly after our honeymoon in November of 2008,” Padien, 37, explains. “We got involved with the Society after that, and participated in the Challenge Walk MS event in 2009 and 2011. However, this year I wanted to splash things up a bit.”

An avid swimmer, it was an easy decision to combine swimming with his passion for MS advocacy. So in

June 2014, Padien raced against 228 participants in Sharkfest, a 1.6-mile swim under the Golden Gate Bridge in San Francisco, to raise more than $32,000 for the MS movement.

A few fundraising secrets Padien shares a few insider secrets for anyone who is interested in hosting their own DIY event: • Fundraising is a “contact sport.” The more contacts you make, the more likely you are to raise money. E-mail everyone you know.

• Send e-mail(s) when people are more likely to be in front of their computers.

Monday mornings seemed to work best for Padien.

•Thank everyone (non-donors included) with a follow-up e-mail.

Include your fundraising results and pictures of the event.

Padien encourages anyone who wants to raise money or awareness for MS to find a personalized way to get involved. “If walking or biking for

DIY Fundraising is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical funds for the MS movement in new and creative ways.

Get Started: diyMS.org

Check out the 2014 Annual Report at cureMSco-wy.org!

2014

Colorado-Wyoming Chapter annual report

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You’ll find highlights from the year, lists of some of the individuals and organizations that were instrumental to our success in 2014 and more!

MS connection: WINTER 2015

GIVING

RETHINK

tax season

There's a connection between your taxes & ending MS. Your voluntary tax contribution can change lives.

MS CONNECTION

Changing Lives With Your Taxes

By Travis White

I never thought of the taxman as a friend. But this year, he is. And, with a little help from our friends, he can remain a friend for many years to come.

A number of years ago, our chapter qualified to participate in Colorado’s tax check-off fundraising program.

The idea is simple. When you file your Colorado income tax return, you can send a donation to a qualified charity.

We’re one of them.

To tell you the truth, I’ve never done it before. I give to NMSS in a variety of ways, as I’m sure that you do, too.

After raising money for Walk or Bike or MuckFest, it never occurred to me to also contribute through the tax channel. It seemed unnecessary.

But this year, I’m gong to contribute through the Colorado program and I hope you will, too. Here’s why: it’s an important fundraising channel and we need to raise a certain minimum amount each year to remain in the program.

By participating in the program, we’ve raised several hundred thousand dollars for MS. To continue to qualify, we

Travis White is a Colorado-Wyoming Chapter board member and has raised more than $70,000 for the Society since 2011 to support promising research.

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need to raise at least $75,000 each year.

In most years, we’re very close to the target. This year, we’d like to make sure that we exceed it.

So, if you’re considering giving $10 or $100 or $1,000, think about giving through the Colorado income tax program. It will help us raise funds and awareness.

I never made the connection that the taxman could be our friend. But now it's a connection we all can make.

Make a voluntary tax contribution to the Colorado Multiple Sclerosis Fund on your CO state income tax form.

You can help. It all adds up!

1

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

2

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

3

Tell your friends!

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

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

Stay Connected

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

MS CONNECTION MSconnection.org

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