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WINTER 2012 ARIZONA Chapter

MS Connection Newsletter

Financial assistance program changes lives - Page 5

INSIDE 03 THIS ISSUE

Annual meeting of members

06

10

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WALK MS IS COMING

check up on your health

2012 year in review of MS research

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MS connection: WINTER 2012

something for everyone

The Many Ways to ® JOIN THE MOVEMENT As 2012 winds down, there are many things to reflect upon, as well as prepare for, as we head into 2013. We’re entering a time of WALK NMSS BIKE CHALLENGE family, friends, holiday cheer, and, of course, continuing to help people who are affected by MS. We’ve done a lot this past year to support the 45,500 people affected by MS in Arizona, but our work isn’t done yet. Until the day we stop disease progression, WALK “From our NMSS MS family to BIKErestoreCHALLENGE what’s been lost and end MS forever, we will continue to everything in our means to create a world free of MS. There are yours, thank you for all do many ways you can Join the Movement®:

that you’ve done in 2012. We look forward to working together to do even more in 2013!” NMSS

BIKE

• Start a team at Walk MS! (Page 6) We host these fun events throughout the month of April, and they are a great way to meet other families affected by MS. • Donate! With the year coming to a close, there is still time to make a year-end donation, helping you with your taxes and helping us serve more people! (Page 5)

CHALLENGE

Connect with us online: arizonaMS.org facebook.com/arizonaMS

• Volunteer! (Page 4) There are a ton of ways to get involved! Whether you want to come out to a weekend event, help out at the office during the week, or even work from home in your free time, we’ve got something for everyone. • Become an advocate! (Page 13) Share your story, join the Action Alert, and help us reach out to our state representatives. Thank you for your dedication! Together, we will make a difference in the lives of people affected by MS. Most sincerely,

twitter.com/AZMSSociety On the Cover: Carol, with her new hand controls provided by the Financial Assistance Program

Jim Elfline, Chapter President

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nationalmssociety.org | 1-800-344-4867

SAVE THE DATE

ANNUAL MEETING OF MEMBERS The annual meeting is an opportunity for all of our members and supporters to learn ways in which we address the challenges of each person whose life is affected by MS. This year the meeting will feature a variety of individuals who have “joined the movement” and are moving us closer to a world free of MS. Attendees will also hear an update on the future of MS research.

If you or someone you know would like to be considered as a candidate for the board, please send an e-mail expressing interest to info@aza.nmss.org. Nominations must be submitted by January 1. All nominations will be considered by the Chapter’s Governance Committee. Registration is $5. RSVP to attend by visiting http://calendar.arizonaMS.org and selecting “January 9” or by calling 800-FIGHT-MS (800-344-4867). n

National Multiple Sclerosis Society Arizona Chapter 5025 E. Washington Street, Suite 102 Phoenix, AZ 85034 1-800-344-4867 Chairman: Terry Johnson Chapter President: Jim Elfline Editor & Design: Jessica Ishikawa © 2012 National Multiple Sclerosis Society, Arizona Chapter

Join US! Wednesday, January 9, 2013 6:00-8:00pm The Disability Empowerment Center 5025 E. Washington Street Phoenix, AZ 85034

See all event details at: http://calendar.arizonaMS.org Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

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MS connection: WINTER 2012

LIVING WELL WITH MS

Resources, Support & Guidance at Your Fingertips The National MS Society Information Resource Center (IRC) is the primary venue for educating the community about multiple sclerosis. The IRC offers the most up to date information about MS and provides referrals to local MS care centers, physicians and service providers. It also serves as a resource library of books, videos and audiotapes on MS. This is a free service of the National MS Society.

The IRC can refer you to a number of different professional services in your local community and provide at least three reliable referrals so that you always have a personal choice to make. The pool of resources is ever-growing. Contact the IRC with what resources you need or share your favorite local professional service to add to the referral list. Referrals can include • Neurologists, MS Centers and other physicians • Professional counselors and support groups for individuals and family members • Yoga and aquatic classes or an accessible local gym • Respite and emotional support services for caregivers

How to get information and referrals Call our Information Resource Center to speak with an MS Navigator to obtain answers to the questions about: • MS and being newly diagnosed • Current research and treatments • Community and medical resource referrals • Health and Social Security benefits • And so much more

• Expert guidance on Social Security Disability Insurance, health insurance or other benefits • Ramps, scooters and other mobility equipment Supportive professional staff is available to speak with you Monday-Friday from 7:00am5:00pm MST by calling 800344-4867, option 1 or emailing generalmailbox@nmss.org. n

nationalmssociety.org | 1-800-344-4867

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LIVING WELL WITH MS

FINANCIAL ASSISTANCE PROGRAM CHANGES LIVES The Financial Assistance Program was developed to improve the quality of life for people living with multiple sclerosis. The program helps individuals who are in need of temporary financial assistance to help in specific situations with their expenses. During the last fiscal year, the Financial Assistance Program was able to provide a helping hand to assist 108 individuals with their financial needs. Areas of assistance included auto and home modifications, durable medical equipment, and utility assistance, transportation to medical appointments, recreation/wellness programs and food assistance. Carol, a member of the Arizona Chapter, received financial assistance for vehicle modifications on her car. This assistance enabled Carol to become more independent and help improve her quality of life. This is her story in her own words:

My name is Carol. I would like to thank everyone who helped me receive the hand controls for my car. When my car was modified and they brought it to me I just sat in my car and cried. I have been unable to be an independent person for so long and now I will be able to go to church again, the grocery store, my many doctor’s appointments, etc. I will no longer have to depend on others to take me to my therapy appointments. I am hoping to go back to volunteering as well after I complete my therapy as a result of my back surgery. I was diagnosed with MS in 2000. Unfortunately my MS started as secondary progressive which eventually took away my ability to drive. When I lost my independence, it felt like I had lost a big part of my life. I want to thank the MS Society for being such a major part of my life by making my life better with your generosity. I will be forever grateful for your help.

06 FUNDING THE MISSION

WALK MS ROCKS OUT!

MS connection: WINTER 2012

The year isn’t over yet… you can still donate to any of the mentioned walks at walkmsarizona.org through December 31! n

MISSED THE FALL WALKS? TIME TO GEAR UP FOR SPRING!

Walk MS is the rallying point of the MS movement, a community coming together to raise funds and celebrate hope for the future. And we certainly did that this year! We kicked off our fall Walk MS events with our 5th annual Prescott Walk MS on October 6 at Yavapai College, a new location this year. It was the perfect venue for our walk to grow! We had approximately 200 registered participants and volunteers, with 25 teams. To date, we have raised close to $28,000, as compared to last year’s $19,584! Then, on Saturday, October 13 we held our first West Valley Walk MS at the Westgate City Center in Glendale. We had 370 registered participants and volunteers, with 31 teams registered. To date, we have raised $26,500… not bad for an inaugural event! And, last, but certainly not least, we joined together and walked through the Phoenix Zoo and Desert Botanical Garden for our 25th Annual Phoenix Walk MS on Saturday, November 3. We had approximately 3,100 participants and volunteers registered, with 236 teams, who raised $251,000!

20th Annual Walk MS: Tucson Saturday, March 9 Reid Park Start a walk team or join a team! Volunteer before, during, or after the event! For more information, visit walkMSarizona.org or contact Rachel at rachel.zuckerman@nmss.org or 520-325-0755. These events bring together awareness, hope and fun as we raise much-needed funds to create a world free of MS.

to register for or get more information about any of the events listed, as well as learn about additional events, visit http://calendar.arizonams.org or call 1-800-344-4867 (1-800-FIGHT-MS) and press “1.”

Mark your calendar

local events BOYS NIGHT OUT Tuesday, January 8 6:00–8:00pm Disability Empowerment Center Nina Pullman Conference Center 5025 E Washington Street Phoenix, AZ 85034

No Boys Allowed – Phoenix Wednesday, January 16 6:00–8:00pm, 5:30pm registration Disability Empowerment Center Nina Pullman Conference Center 5025 E Washington Street Phoenix, AZ 85034

NO BOYS ALLOWED - PRESCOTT Friday. January 18 6:00pm Method Coffee 3180 Willow Creek Road Prescott, AZ

MS Moving Forward: A Newly Diagnosed Seminar Saturday, January 26 9:00–11:30am Disability Empowerment Center Arizona Chapter Office 5025 E Washington Street, Suite 102 Phoenix, AZ 85034 Available in person and over the phone

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20s & 30s Thursday, January 31 Aloft Hotel Phoenix Airport 4450 E Washington Street Phoenix, AZ 85034

Complementary & Alternative Medicine and MS Regional Teleconference Thursday, February 7 7:30 –8:30pm Dr. Allen Bowling will discuss some of the options and lifestyle choices to consider when looking at complementary and alternative medicine.

MS Day at the Capitol Prep Workshop Monday, February 18 4:00–7:00pm Disability Empowerment Center Nina Pullman Conference Center 5025 E Washington Street Phoenix, AZ 85034

MS Day at the Capitol Tuesday, February 19 9:00am–3:00pm Arizona Capitol Complex Historic Senate Meeting Room 1700 West Washington Street Phoenix, AZ 85007

continued on next page

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If you would like more information about support groups in your area, call 1-800-344-4867, and press ‘1’ or contact a Listed leader.

Mark your calendar (continued) Tucson MS Social Club

To provide an opportunity for adults affected by multiple sclerosis to enjoy a variety of activities. For more information, contact Sue Randall at (520) 837-8068.

Yuma Psychological Empowerment Group Third Saturday of the Month 10:00am-12:00pm Yuma Rehabilitation Hospital 901 W 24th Street Group provides positive support and skills for persons living with MS to improve overall wellness and to learn from and connect with others living with MS. Contact Rachel for more information at (520) 325-0755.

Educational Empowerment Group First Thursday of the Month 6:30-8:00pm Yuma Regional MC Corporate Center 399 E 32nd Street Connect with others living with or affect by MS during this ongoing educational information series. Contact Rachel for more information at (520) 325-0755.

SUPPORT GROUPS AHWATUKEE Foothills/tempe/chandler

Lynn (480) 414-7172 Renee (480) 940-0521 3rd Monday of the month from September-June, 10:00am Ahwatukee CHW Urgent Care Conference Room 4545 East Chandler Blvd.

BULLHEAD CITY

Nancy (928) 768-2668 2nd Wednesday of the Month, 12:30pm 1855 Arizona 95

CENTRAL PHOENIX (DAY)

Chuck (602) 956-8129 2nd Monday of the month, 10:00am First United Methodist Church 5510 N. Central Avenue

EAST VALLEY

Deb (480) 890-1488 3rd Thursday of the month, 10:00am Grace United Methodist Church 2024 E. University Dr., #502

FLAGSTAFF

Kathy (928) 774-2375 Please call for meeting time & location

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nationalmssociety.org | 1-800-344-4867

GILBERT - Active with MS

Mark (480) 518-5971 4th Thursday of the month, 5:00pm Banner Neuro Wellness 207 N. Gilbert Rd., Suite 205 This group is open to all levels of activity and geared towards those aspiring to become more active or who are currently involved in sports.

GLENDALE

Deborah (623) 974-6944 1st Tuesday of the month, 12:00pm First Southern Baptist Church 10250 N. 59th Avenue

KINGMAN

Ralph (928) 897-3801 Pati (928) 692-0979 3rd Saturday of the month, 3:00pm Kingman Regional Medical Center Choila Room 3269 Stockton Hill Road

NORTH SCOTTSDALE

Lisa (480) 860-2367 2nd Tuesday of the month, 4:30pm Scottsdale Senior Center 10440 East Via Linda, Room 8

SUN CITY

Judy (623) 972-3941 Karen (623) 584-8575 1st Thursday of the Month, 10:30am First Presbyterian Church 12225 North 103rd Ave

TUCSON NORTHWEST GROUP

Cindy (520) 887-8905 Carol (520) 797-0405 2nd Wednesday of the month, 10:00am Casas Adobes Congregational Church 6801 North Oracle Road

TUCSON CENTRAL GROUP

Crystal (520) 271-3807 Please call for meeting time & location

WOMEN’S GROUP-MARICOPA COUNTY

Erika (480) 445-3935 Last Saturday of the month, 10:00am St. Joseph’s Hospital Conference Room 1 350 W. Thomas Rd., Phoenix

PRESCOTT VALLEY/PRESCOTT

DON’t SEE A support group IN YOUR AREA? Join us for a statewide skype group!

SIGNIFICANT OTHERS

Eldene - (480) 860-9359 1st Tuesday of the month, 3:00 pm This group uses the free internet service Skype to meet from any location in Arizona. Call Eldene for more details on how to participate from the comfort of your home.

Larry (928) 775-7334 Alan (928) 710-1257 2nd Thursday of the month, 1:30pm Mountain Valley Rehabilitation Hospital 3700 N Windsong Drive, Prescott Valley Lois (602) 672-9234 Please call for meeting time & location

10 NEWLY DIAGNOSED

Check up on your health

When I think of my health, multiple sclerosis dominates my thoughts. I run through my inventory of symptoms that are acting up and medications that are causing side effects. Usually, it’s only when I have something like a cold or a stomach virus that it occurs to me that there is more to my physical health than my MS. Unfair as it might seem, people with MS are subject to the same health problems as people who are not living with the disease. We have the same lifestyle and aging issues. We have to consider preventive care for things like heart disease, high blood pressure and cholesterol as we age. Women need to get mammograms and pap smears on a regular basis. We need to keep up with immunizations, as well as visits to dentists and eye doctors. (Visit nationalMSsociety.org/ preventivecare for preventive care recommendations.) There are also special risks that we have that are directly or indirectly related to our MS, such as:

MS connection: WINTER 2012 • Osteoporosis: People with MS are more likely to have osteoporosis (loss of bone density). This is due to a number of factors, including limited mobility, low levels of vitamin D (which is essential for calcium absorption) and excessive use of corticosteroids (for instance, many Solu-Medrol courses over a short period of time). Your doctor can order a bone scan to test for osteoporosis. • Depression: Depression can be a primary symptom of MS. It can also be indirectly caused by the losses and unpredictability of MS. Your neurologist or general practitioner should be able to refer you to a psychologist or psychiatrist to treat your depression, preferably one with experience treating patients with MS. • Vitamin deficiencies: People with MS tend to have low levels or deficiencies of vitamin D and vitamin B12. Ask your general practitioner about tests and a treatment plan if needed. Make an appointment to see your regular doctor and get the rest of yourself checked out. The last thing that any of us needs is additional health problems that could have been caught early or prevented by taking action. Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and ms.about.com. Originally published at blog. nationalMSsociety.org.

nationalmssociety.org | 1-800-344-4867

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FUNDING THE MISSION

CHEERS FOR CORKS & CORDS

On September 15th the MS Society, Arizona Chapter hosted our 6th annual Cooks and Chords, A Taste for a World Free of MS presented by Express Scripts and Mayo Clinic. The event took place in the Mayo Clinic’s beautiful reception area nestled among the foothills of scenic Scottsdale. The event was a success with over 255 registered participants and raising over $35,000. Guests enjoyed stations of amazing dishes prepared by our chef contributors Aiello’s Salumeria, Isa’s Pizza, Charr Burger , Mayo Clinic, Sierra Bonita Grill, Brio and SOL Cocina. As guests browsed packages in our raffle and silent auction they enjoyed our music talents Casey Lee Smith (CaseyLeeSmith.com), Sander Nassan, Jazz Alive and Luke Holton (LukeHolton.com). Guest were also treated with entertainment provided by Chris and Lena Jácome “Flamenco Duet”. This powerful husband and wife flamenco duo provided an exceptionally exciting and thrilling flamenco performance that only a perfectly matched pair can manifest. Chris and Lena’s strong partnership and artistic communication kept our audience mesmerized as they shared an unforgettable experience filled with flamenco music, dance, song and the profound connection of two kindred spirits sharing their love for each other through their art (CBJMusic.com).

This event would not have been successful without our wonderful sponsors: Presenting Sponsors: Express Scripts and Mayo Clinic; Supporting Sponsors: Questcor; Premier Sponsors: Cox Communications and McCarthy Builders; and Corporate Sponsors: Care1st Health Plan Arizona, Inc., Fennemore Craig, Healthsouth and Plaza Companies. We would also like to thank our Cooks and Chords planning committee including our Committee Chair, Marion Kelly and members Rebecca Davidson, Amber Huntley-Ruiz, Ryan Fix, Laura Liberty, Sarah Meeks, Mary Neifert and Felipe Ruiz. If you are interested in joining the planning committee for the 7th annual Cooks and Chords event contact Brandee at 480-455-3958 or Brandee.Wessel@nmss.org. n

Face What Consumes You Motorcycle Ride Saturday, March 9, 2013 $20 Rider $30 with Passenger T-Shirts for First 100 Registrants Registration Begins AT 10:00am

For more information visit www.facewhatconsumesyou.com

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nationalmssociety.org | 1-800-344-4867

funding the mission

bike ms is back!

Change. Sometimes we all need change to really appreciate certain things in our lives. Something as simple as a change in weather, for example, can have a profound effect on our mood. Now, consider this setting for a nice weekend bike ride: Sedona, red rock mountains, sunny skies, 84 degree weather, with a cool breeze. Contrast that with the reality of the 2012 ride: Sedona, snow, sleet, red rock mountains, hail, rain, and a cloudy 39 degrees. It’s simply because of this fact that the 2013 ride was pushed back one month to May 18 & 19. With this later date, we’re confident that Mother Nature will be on our side. While some changes are necessary particularly when it comes to weather, other circumstances remain constant. Our need for volunteers is a perfect example of this. Now,

more than ever we need volunteers for this cycling event. As we enter our second year of hosting Bike MS: Ride the Vortex in Sedona Verde Valley, we need our families, friends, clients, sponsors, and partners to join us for this great event to support this great cause. We can’t do this event without your help. So register to ride or volunteer today! n

Bike MS: Ride the Vortex 2013 May 18 & 19

Verde Valley Fairgrounds

Route options for all ability levels! Register to ride or volunteer at bikeMSarizona.org.

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MS connection: WINTER 2012

advocacy

MS Activists succeed in 2012 by Renee Vandlik

Together on the frontline, the National MS Society and MS activists nationwide connect with decision makers, work with like-minded partners and create change to impact the greatest number of people possible. As a united MS Movement, we want to do something about MS now. Here are our 2012 federal and state successes that show what can be achieved by MS activists.

Federal Successes MS activists… • Added an aggressive form of MS to qualify for the “Compassionate Allowances Initiative” at the Social Security Administration. This will allow people with MS who qualify to receive Social Security Disability Insurance (SSDI) quicker than the average applicant. • Established new federal funding avenues that have yielded over $20 million for MS research. • Introduced legislation that would allow Medicare Part D to cover off-label drugs for people living with MS. • Promoted awareness and importance of a wide range of caregiving initiatives for the

people who care for people with MS. This included advocating for increased funding for and reauthorization of the Lifespan Respite Care Program, which improves access to quality respite for family caregivers, and supporting the introduction of legislation to support Adult Day Achievement Centers. • Promoted increased awareness of MS on Capitol Hill by hosting legislative briefings and national recognition of MS Awareness Week. • Formed and continued to grow the first Congressional MS Caucus in the Senate and the House of Representatives. More than 25 percent of representatives in both chambers has shown their commitment to developing policy solutions for people with MS by joining the Caucus.

State and Community Successes • Several states across the United States addressed the cost of MS disease-modifying therapies (DMTs) through legislative

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nationalmssociety.org | 1-800-344-4867

provided utility coverage for people with medical conditions who would be adversely impacted by discontinuation of services. • Kansas, Missouri, Ohio and Virginia aim to create or preserve state income tax credits for accessible home modifications that maintain independence.

action. Louisiana and Texas contained the cost of DMTs during a contract period and require transparency in pricing. A Maine state law prohibits prescription drug pricing that exceeds the dollar amount for non-preferred brand drugs, while Delaware made recommendations to limit increasing prescription drug costs. A Vermont state law will limit out-of-pocket prescription drug expenses, while Virginia is examining the issue. These actions build upon a 2010 New York law to prohibit co-insurance pricing for prescription drugs. Co-insurance pricing is a rapidly growing insurance practice that requires the consumer to pay a percentage of a medication’s cost, rather than a fixed co-payment. • Rhode Island secured 13 new accessible taxis to serve 17 communities. • New Hampshire, Illinois and Missouri strengthened accessible parking laws in various ways, including imposing fines for blocking access aisles and requiring more accessible parking spaces for vans. • Colorado,

Connecticut

and

Virginia

• New Jersey created an MS Task Force, charged with developing strategies to identify and address the unmet needs of people with MS in the state. • Missouri, New York, North Carolina, Oklahoma, Pennsylvania and South Carolina offer state license plates with the MS logo to raise awareness of the disease. • State tax forms in Delaware, Louisiana, Missouri, Oklahoma and Wisconsin now offer a voluntary designation to benefit MS. To date, more than $1 million has been raised. • Illinois passed legislation to amend the Illinois Lottery Law and offer instant scratch-off tickets, so far raising more than $3.9 million for MS research. As MS activists, we want everyone on the frontline with us. To effect change in our area, join the MS Activist network at www. nationalMSsociety.org/advocacy or call us. Share your personal stories with us and policy makers to create understanding, engagement and action. Renee Vandlik is the Society’s director of State Government and Local Government Relations.

National MS Society Arizona Chapter Fundraiser & Awareness Night with the Phoenix Suns! Section

Row

Seat

Admission

PHOENIX SUNS VS. HOUSTON ROCKETS Saturday, March 9, 7:00PM at US AIRWAYS CENTER

GROUP PACKAGE INCLUDES : •Discounted Phoenix Suns tickets with no fees •FREE Suns gift for each ticket purchased •Special group welcome on the video board •Group seating in the upper or lower level •Come see the National MS Society table at section 114! •A portion of the proceeds go back to the AZ Chapter!

ORDER FORM Game Date

# of Tickets

3/9

Ticket Price

Total

Lower Level + Suns replica jersey (Baseline, Rows 6+, up to $121.75 Value)

$95

Upper Level + drawstring backpack (First Five Rows, up to $71.75 Value)

$70

Upper Level + drawstring backpack (Side, Rows 6+, up to $68.75 Value)

$40

Upper Level + drawstring backpack (Baseline, Rows 6+, up to $27.75 Value)

$26

A portion of the proceeds go directly back to the MS Society!

Total Amount Enclosed:

PAYMENT INFO

PAYMENT METHOD: CREDIT CARD, CASH OR CHECK

FULL NAME CREDIT CARD NUMBER

EXP DATE

SIGNATURE (REQUIRED) ADDRESS CITY, STATE, ZIP HOME PHONE

CELL

EMAIL

ORDER DEADLINE Wednesday, February 13, 2013 For more information contact Lisa Cleary lisa.cleary@nmss.org or (480) 455-3954

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nationalmssociety.org | 1-800-344-4867

MS research year in Review

2012: Sweeping Advances Made in MS ResEARCH MS research continued to advance on many fronts in 2012, with the approval of a new oral therapy and other emerging treatments progressing through the pipeline. This year saw the launch of the International Collaborative on Progressive MS, the greatest effort to date to speed research to stop progressive MS, and the discovery of what could be a target of the immune attack in people with MS may lead to new understanding of the disease and new treatment approaches. A step toward repairing myelin was made with the completion of the first human trial of an experimental therapy targeting myelin repair. Advances were also made in uncovering MS triggering factors, bringing us closer to finding ways to prevent the disease.

The National MS Society continues to propel research forward with a comprehensive research strategy aimed at stopping MS, restoring function and ending MS forever. This year we provided $44 million to support over 350 new and ongoing projects and research and clinical training fellowships, including everything from discovery research to the Society’s commercial drug development efforts through Fast Forward® (www.fastforward.org). Read about recently launched research projects at http://tinyurl.com/ MS-41572. In the world’s largest meeting dedicated to MS research, this year 7,000 investigators convened in Lyon, France to present findings at ECTRIMS (European Committee for Treatment

and Research in MS), with results of over 1250 studies covering virtually every aspect of research (http://tinyurl.com/MS-7052).

STOPPING MS

FDA Approves Oral Teriflunomide – Brand Name Aubagio® – The once-daily pill was approved as a disease-modifying therapy for relapsing forms of MS. Aubagio is the second oral disease-modifying therapy approved for the treatment of MS, and it became available for prescription by October 1, 2012 in the U.S. http://tinyurl.com/MS-68648 MS Societies worldwide collaborate to stop MS progression – The newly formed International Collaborative on Progressive MS published a paper outlining challenges and identifying key research priorities to propel efforts to stop MS progression. An international meeting is set for February 2013, where plans will continue for moving this research forward. http://tinyurl.com/MS-8647a Two potential therapies before FDA – Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS. This oral therapy showed benefits against relapses and other MS activity in recent trials. The FDA review is underway (http://tinyurl.com/MS-6015MS). Genzyme applied for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials. It is given by a cycle of IV infusions once per year. The FDA asked the company to resubmit its application. http://tinyurl.com/MS-6496MS

18 MS research year in Review

Possible target of immune attacks in some people with MS – An immune response to a protein – called “KIR4.1,” which is found on several types of brain cells – was observed in the serum of 47% of people with MS. Further research is needed to confirm and understand these findings. The international team members are supported by grants from the German Ministry for Education and Research and the National MS Society, among others. http://tinyurl.com/MS-6619MS New approach to stopping MS -- Researchers at Northwestern University have developed an innovative strategy for selectively inhibiting the immune attack in MS using tiny “nanoparticles” that were able to reduce disease activity in mice. The team is now planning a phase I clinical trial of this new technology. http://tinyurl.com/MS-7126MS Stress management reduces MS activity – A 24-week stress management program reduced disease activity on MRI scans significantly more than in a control group, in a study at Northwestern University involving 121 people with relapsing MS. However, the benefits appeared to disappear after the weekly in-person stress management sessions were completed. Future studies should provide more clarity for optimizing the potential benefits of stress management. http://tinyurl.com/MS-6629MS

RESTORING WHAT’S BEEN LOST

Trial of patients’ own adult stem cells appear safe and hints of benefit -- Researchers in the UK published results of a small clinical trial involving 10 people with secondary-progressive MS, reporting that injecting a person’s own bone marrow stem cells appeared safe and possibly

MS connection: WINTER 2012 beneficial in helping to protect the nervous system from injury. Further trials are now underway to establish its safety and potential benefit. http://tinyurl.com/MS-5951MS Collaboration to find new therapies that will repair the nervous system in people with MS – Fast Forward is funding research at the Universities of Cambridge and Edinburgh, UK to screen for compounds that can stimulate myelin repair in MS. The project grew out of findings from a Nervous System Repair and Protection Initiative funded through the Society’s Promise:2010 campaign. http://tinyurl.com/MS-6767MS Study suggests balance/ eye movement training improves MS symptoms – University of Colorado researchers found that a 6-week balance and eye movement-focused exercise program improved balance, reduced fatigue, and reduced disability due to dizziness or disequilibrium, lasting for at least 4 weeks. A larger and longer study is now getting underway with National MS Society support. http://tinyurl.com/MS-6119MS Rehabilitation technique improves memory -- Learning and memory improved in people with MS with a technique that uses stories and imagery to cement learning. This was accompanied by increased activation of areas in the brain related to memory and learning. The Kessler Foundation Research Center investigation was funded in part by the Society’s Mentor-Based Postdoctoral Fellowship program in rehabilitation research. http://tinyurl.com/MS-5962MS Small study reports benefit of marijuana on MS spasticity -- California investigators found

nationalmssociety.org | 1-800-344-4867

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some benefit of smoked marijuana against spasticity and pain in people with MS in a small clinical trial. Participants also experienced reduced thinking ability after smoking marijuana, highlighting the need for research on cannabis products or other treatments that can more selectively reduce painful symptoms without producing adverse effects on cognitive function. Additional research is being supported by the Society and others. http://tinyurl.com/MS-6374MS

between a rare variation of a gene that controls vitamin D levels and the development of MS in rare families with multiple members who have the disease. This gene variation causes dysfunction that leads to vitamin D deficiency. http://tinyurl.com/MS-5778MS

Study suggests Latinos with MS experience worse pain and other symptoms – A National MS Society-supported study at the Mississippi State University found that a sample of Hispanics/Latinos with MS reported more pain, fatigue, cognitive problems, mental health problems, and dissatisfaction with their access to mental health care than the general MS population, calling attention to the need for more accessible and culturally relevant mental health and social services. http://tinyurl.com/MS-6044MS

Studies presented at the annual meeting of the American Academy of Neurology included one on suggesting that men with low blood levels of vitamin D may be more susceptible to MS disability, according to a University of Utah study of 500 people with different types of MS. Read more results from the meeting http://tinyurl.com/MS-6377MS

ENDING MS FOREVER

Breakthrough in understanding gene activities – A government-supported, global study called the ENCODE project has mapped out specific biological functions of more than 80% of the human genome (genetic material), bringing into sharper focus the complex controls over the turning on and turning off of genetic information within cells. This leap-frog advance will greatly enhance efforts to understand the influence of genes on human diseases like MS. http://www.genome.gov/27549810 Studies further understanding of vitamin D and MS risk: Researchers in the United Kingdom and Canada reported an association

In a separate study from Swedish investigators, high levels of vitamin D in the blood of pregnant women was associated with reducing their risk of developing MS later. http://tinyurl.com/MS-7127MS

How Epstein-Barr virus may play role in MS -This virus has been linked to increased risk for MS. In active brain lesions in people who had MS in their lifetimes, the researchers found high levels of a chemical that helps the body fight viruses, and nearby, immune B cells latently (inactively) infected by Epstein-Barr virus. They did not find signs of active viral infection. The findings may point to a possible mechanism for how the virus might indirectly stimulate MS disease activity. http://tinyurl.com/MS-5836MS These and other important advances are bringing us ever closer to stopping disease progression, restoring what’s been lost and ending MS forever. To see all the research news from 2012, visit http://nationalmssociety.org/ research/research-news/index.aspx.

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID

5025 E. Washington Street, Suite 102 Phoenix, AZ 85034

mark your

calendars

January: 8: Boys Night Out - Phoenix 9: Annual Meeting of Members 16: No Boys Allowed - Phoenix 18: No Boys Allowed - Phoenix February: 7: Complementary & Alternative Medicine & MS Teleconference 18: MS Day at the Capitol Prep Workshop 19: MS Day at the Capitol March: 9: Walk MS - Tucson May: 18/19: Bike MS: Ride the Vortex See more events and programs at http://calendar.arizonaMS.org.

FOOD FOR THOUGHT


Arizona Winter 2013 MS Connection