Spring 2013 ARIZONA Chapter
MS Connection Newsletter
cyclists unite to end MS page 10
INSIDE 03 THIS ISSUE
a place for everyone at walk ms
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07
12
advocacy update
upcoming local events
progress on ms research
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MS connection: SPRING 2013
JOIN THE MOVEMENT
MS kills connection. connection kills ms. WALK
NMSS
BIKE
MS Awareness Week is WALK NMSS March 11-17. What’s your connection? Tell us yours and meet others like you at MSconnection.org NMSS
BIKE
Anytime is a good time to help create awareness about multiple sclerosis, and we’re kicking off our efforts during MS Awareness CHALLENGE Week from March 11-17. Do you know some of the ways you can get involved and get connected? Connect with MS activists on the frontline by signing up for updates and action alerts at http://ntl.ms/Msactivists. Learn BIKEfederalCHALLENGE more about our advocacy efforts on page 15. Walk MS connects people living with MS and those who care about them. When you participate in this community event, the funds you raise give hope to the more than 2.1 million people living with MS worldwide. See the different ways to get involved on pages 12 & 13.
Be a part of our online community and get connected with people just like you! By connecting all of our knowledge, and hope, and experience, we can gain new understanding of how to move CHALLENGE forward. Share why you connect at MSconnection.org today. We have several other ways you can be a part of MS Awareness Week. You can learn more on page 6.
Connect with us online: arizonaMS.org
With so many ways to get involved, won’t you commit to taking a least one action toward helping us spread MS awareness? With your help we can continue to work towards creating a world free of multiple sclerosis!
facebook.com/arizonaMS
Most sincerely,
twitter.com/AZMSSociety
On the Cover: Riders get going at the annual Bike MS Ride the Vortex
Jim Elfline, Chapter President
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nationalmssociety.org | 1-800-344-4867
Ways to give
A place for everyone at Walk MS
Rose Hill with her two sons, MichAel, at left, who lives with MS, and Larry
by Laurel Bennett
In spring 2011, then 93-year-old Rose Hill embarked upon her third Walk MS in honor of her son Michael, who lives with multiple sclerosis. She wanted to do something to help Michael, and so many others who are affected by the disease, live better lives. To get in shape for the big day, Rose walked laps around her retirement home. On the day of the event, Rose made it halfway before she started to feel tired. Her family asked if she wanted a ride to the end and her reply was, “No way!” Grandchildren, children and friends held onto her arms and together they trekked toward the finish line. The next year, at 94, Rose registered for Walk 2012 as co-captain for her team, A Rose for a Cure. There is a place for everyone at Walk MS. Family members from grandparents to tiny tod-
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
dlers, people newly diagnosed with MS, people with progressive MS, friends, coworkers and more all take part in Walk MS events across the nation. Walk MS is for anyone who wants to do something about MS now. Whatever your experience is with MS, we invite you to join us. Be a part of the Walk MS community. Start a team, join a team, volunteer or be there cheering participants along to the finish line. Connect with new people, learn about our programs and services, and help us get closer to a cure. Go to walkMSarizona.org or call 1-800-344-4867 today.
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: SPRING 2013
SUPPORTING OUR MISSION
WOMEN AGAINST MS by Shana Diana (WAMS COMMITTEE MEMBER)
Nearly 75% of people living with MS are women. When faced with this shocking diagnosis, many are faced with physical, emotional, and financial crises. Here’s how Shana Diana found strength and inspiration: This year marks the 10th anniversary of my MS diagnosis. What surprises me most is how good I feel and how happy I am today. Don’t get me wrong, the diagnosis was devastating. I was a runner who could no longer jog down the block. I was a mom with young children who moved non-stop. And, I was a working woman who needed a way to make a living, regardless of what the doctor had to say. In the end what made everything easier were family and friends. It was my friend, Kelly Glawe, who first introduced me to Women Against MS (WAMS). Kelly and I met when our daughters attended the same Montessori class. When others learned of my diagnosis, they recommended I talk to Kelly because she had MS too. It was great to have a friend who could relate to the struggles, confusion and fear of the future. Kelly’s humor, joy for life, and devotion to her family was inspiring. So, when Kelly asked if I wanted to host a table at the WAMS lunch in 2006, I said yes without even thinking. Through the years, WAMS Luncheons have been a source of inspiration and celebration. When I look around the room, I see people who are enjoying their lives and taking a moment to cheer each other on as we rally against MS.
Today, I have the good fortune to be a member of the WAMS committee. The theme of this year’s Luncheon is Multiple Stories of Inspiration. Each of us has a story and, at the event, you’ll hear from people who live with MS or love someone who does. We look forward to sharing our tables with family, friends and associates who gather in support of all of us. n Special thanks to our generous sponsors, including our Presenting Sponsor:
Join us for the 8th Annual Women Against MS Luncheon Thursday, April 25 at the Arizona Biltmore Resort & Spa
Tickets are $75 Register at arizonaMS.org or contact Lisa at 480-455-3954
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nationalmssociety.org | 1-800-344-4867
ADVOCACY
Day of Activism in Washington State
By ted thompson
developing legislative long-term care alternatives. n A delay of two months to across-theboard cuts (the “sequester”) to defense and non-defense programs, including medical research. n A limit on itemized deductions for individuals making over $250,000 a year and families earning over $300,000 per year; however, no limit or cap on charitable deductions was put in place.
WHAT THE legislation MEANS After intense negotiations in January, the American Taxpayer Relief Act of 2012 was signed into law, which averted the so-called “fiscal cliff,” a drastic convergence of increased taxes and reduced spending. No more crisis, but what does the new legislation mean to people living with multiple sclerosis?
What’s in the law Some of the health and other provisions in the new law that may impact people living with MS include: n
A delay until December 31, 2013, to a scheduled 26.5% cut to Medicare physicians. n An extension to the same date of the Medicare therapy cap exceptions process, which ensures that people with MS can continue to access needed outpatient therapy services. n A repeal of the Community Living Assistance Services and Supports (CLASS) Program, a voluntary long-term insurance program intended to help maintain community residence and independence. However, the law sets up in its place a bipartisan commission tasked with
Make your voice heard The 113th Congress was sworn in and commenced January 3, 2013. With the acrossthe-board cuts only delayed for two months and the debt limit not increased, members of Congress will hit the ground running. Sign up at www.nationalmssociety.org/MSActivist, and follow the MS Activist blog (www. MSactivist.org) and Twitter, @MSActivist to stay tuned for opportunities to weigh in with your legislators over the next several weeks on the importance of protecting medical research and programs like Medicaid and Social Security. n Ted Thompson is the Society’s vice president of Federal Government Relations.
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MS connection: SPRING 2013
FUNDING THE MISSION
Walkers keep up their fundraising! On Saturday, March 9, we celebrated our 20th Annual Tucson Walk MS event at Reid Park! Great job and HUGE thanks to all of our amazing teams, sponsors, volunteers and committee members! Don’t forget… Just because the walk is over, doesn’t mean we’re done fundraising! You can still turn in donations at walkmsarizona.org or to the chapter office (address on page 2) until May 10. Teams that raise $2,500 or more will earn a team tent and special team walk shirts for next year’s Tucson Walk MS! Also, check out the super cool prizes you can earn by continuing to fundraise. To see what we’ve got, check out darterprizes.com/msTucsonAZ857. If you have any questions about post-walk fundraising, or would like to get more involved, please contact Rachel at rachel.zuckerman@nmss.org or (520) 325-0755. n
WAYS TO GET INVOLVED IN MS AWARENESS In the spirit of MS Awareness Week, the Arizona chapter would like to thank all of our hardworking volunteers who participate in our events, raise awareness in their communities, and work to improve the quality of life for all those impacted by multiple sclerosis in Arizona. Are you interested in volunteering but don’t know how to get involved? Here are 5 great options to get you started! For information about volunteering, contact Jacquline at jacqeline.valencia@nmss.org or (480)968-2488. n
1. Raise awareness and money for the chapter
by eating at any of the participating restaurants during MS Awareness Week. (Visit Rubio’s, Sweet Tomatoes, Lonestar, Islands, and California Pizza Kitchen)
2. Be a part of the Bike MS Call Night on
March 19, 5 – 7pm
3. Join Peer Support on April 5, 10am – 2pm 4. Volunteer at Women Against MS Luncheon on
April 25 (see page 4 for more details)
5. Volunteer at Bike MS: Ride The Vortex on
May 17 – 19
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.”
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Mark your calendar
local events No Boys Allowed – Prescott Friday, March 15 6:00pm Method Coffee Prescott Walk MS Sponsor 3180 Willow Creek Road, Ste a1 Prescott, AZ
MOVING FORWARD: PROGRAM FOR THE NEWLY DIAGNOSED Saturday, March 23 9:00 – 11:30am Disability Empowerment Center 5025 E Washington Street, Suite 102 Phoenix, AZ 85034 Available in person and over the phone
Important Decisions about Employment & Benefits When Living with MS Thursday, April 4 6:30pm – 7:30pm What happens to my employment options when my condition worsens and what will it mean to my connection to health care? If I am eligible for benefits does it mean I can never work again? This presentation begins to unravel a lot of the myths and misconceptions by providing information, facts and reality to the world of opportunity for individuals and workers with disabilities.
Aquatics for MS Tuesdays and Thursdays 3:00 - 3:45pm Del E. Webb Wellness & Rehabilitation Center 1719 Beverly Avenue Kingman, AZ This is a very low impact, light resistence stretch, flex, and balance class. Breathing and relaxation techniques are incorporated, as well as a fair amount of sharing of recommended dietary and exercise routine information. Contact Pati for more information at (928) 530-7982
MS Land Class Mondays and Wednessdays 2:00 - 2:45pm Del E. Webb Wellness & Rehabilitation Center 1719 Beverly Avenue Kingman, AZ The MS Land Class includes a series of low impact, light resistance stretch, flex and balance exercises done from chairs and some standing if you are able. Breathing and relaxation techniques are incorporated, as well as a fair amount of sharing of recommended dietary and exercise routine information. Contact Pati for more information at (928) 530-7982
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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.
SUPPORT GROUPS AHWATUKEE Foothills/tempe/chandler
GILBERT - Active with MS
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.
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.
BULLHEAD CITY
GLENDALE
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
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 2nd Tuesday of the month, 5:30pm Kingman Regional Medical Center Ocotillo 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
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nationalmssociety.org | 1-800-344-4867
PRESCOTT VALLEY/PRESCOTT
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
Sierra Vista
Judie (520) 378-4400 4th Wednesday of the month, 11:00am Country House Cafe 4373 Arizona 92
SIGNIFICANT OTHERS
Lois (602) 672-9234 Please call for meeting time & location
SUN CITY
Judy (623) 972-3941 Karen (623) 584-8575 1st Thursday of the Month, 10:30am First Presbyterian Church 12225 North 103rd Ave
WOMEN’S GROUP-MARICOPA COUNTY
Erika (480) 455-3959 Last Saturday of the month, 10:00am St. Joseph’s Hospital Conference Room 1 350 W. Thomas Rd., Phoenix
YUMA Educational empowerment group Rachel (520) 325-0755 1st Thursday of the month, 6:30pm Yuma Regional MS Corporate Center 399 E 32nd Street
YUMA Psychological empowerment group Rachel (520) 325-0755 3rd Saturday of the month, 10:00am Yuma Rehabilitation Hospital 901 W 24th Street
TUCSON NORTHWEST GROUP
DON’t SEE A support group IN YOUR AREA? Join us for a statewide skype group!
TUCSON CENTRAL GROUP
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.
Cindy (520) 887-8905 Carol (520) 797-0405 2nd Wednesday of the month, 10:00am Casas Adobes Congregational Church 6801 North Oracle Road Crystal (520) 271-3807 Please call for meeting time & location
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MS connection: Spring 2013
FUNDING THE MISSION
DON’T JUST RIDE, BIKE MS
On May 18th Art Krzyzewski and Pat Stover will participate in Bike MS: Ride the Vortex – Sedona Verde Valley. Both men are working toward a common goal, but with two different paths. The goal: A world free of MS. For Art, this will be his 20th Bike MS Arizona event. In 1992, Art was invited to volunteer at the Best Dam Bike Tour (now known as Bike MS: Ride the Vortex) which took cyclists from Phoenix out to the Parker Dam in San Bernardino County, California. Without hesitation, Art accepted the challenge. Little did he know that weekend would have a lasting impact. After volunteering the first year, Art decided to participate as a cyclist. Since then, Art has done every Bike MS Arizona event. “The camaraderie of everyone involved,” Krzyzewski said, “is what inspired me to ride the first time. Years later I discovered a close friend had MS and so I rode for her. Throughout the years I developed more relationships with those who have connections.” Krzyzewski is also consistently a Top Fundraiser and it appears the competitive spirit is in his blood. Although they’ve never met, Art’s third cousin is none other than NCAA champion and two-time Olympic Gold Medalist, legendary basketball coach Mike Krzyzewski (Coach K) of Duke
University. With this bloodline, it’s no surprise that Art is successful year after year. In the last three years Art has raised nearly $10,000. Using classic fundraising tactics, Art prefers face to face interactions over emails and social media. “I talk to my friends, family, my coworkers; and reach out to people I know across the country. But 80% of the money comes from being outside my church every weekend the month before the ride” Krzyzewski says. “As my pastor says, this has brought a different purpose to my life, to help cure MS.”
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nationalmssociety.org | 1-800-344-4867
In 1993, at 19, Pat Stover’s mom was diagnosed with MS (In 2011 she was told that this was a misdiagnosis of what was actually restless leg syndrome). Ten years later he rode in Arizona’s Best Dam Bike Tour for the first time, in support of her. This May, Pat will ride in Bike MS Arizona for the ninth time. “It was a combination of things,” Pat said when asked why he participated the first time. “My mom was diagnosed with MS; a lot of my friends were cycling but also the challenge! As a new rider it was great motivation to get myself in good shape.” In 2011, Intel Arizona began funding “Great Place to Work” (GPTW) events, which gave employees opportunities to attend and participate in various events around the Valley.
“As I had ridden in the Bike MS several times, I thought this would be a great opportunity for Intel. The 2012 Intel-GPTW team raised almost $25k with 50+ team members,” Stover said. A Top Fundraiser, he’s relentless in his pursuit to recruit and fundraise, but Pat is continually amazed by the support he receives. “Above all, I enjoy seeing the generosity of all of my friends’ and family’s contributions to my ride each year. Last year, it was really great to have such an Intel presence at the ride. I always enjoy riding and the overall social aspect of the ride, and toughing-out the weather last year, too!” The lasting impact is greater for Pat, “I’m always amazed by how many people donate to the ride have personal relationships with someone affected by MS. Hearing their stories and knowing that the Bike MS will provide help directly to those folks is such a powerful motivation and is very rewarding.”
BE A PART OF BIKE MS: RIDE THE VORTEX! May 18 & 19 Verde Valley Fairgrounds 30, 50, 75, 100, or 150 miles over 1 or 2 days
Fundraising Minimum: $250 Register at bikeMSarizona.org or contact Blaine at blaine.king@nmss.org or at 480-968-2488
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MS connection: Spring 2013
research
Progress on ms therapies by Megan Weigel, CNP, ARNP-C, MSCN
In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brand name Aubagio®) by the FDA in October, 2012, we now have nine diseasemodifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/ emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments. Research on potential treatments for progressive forms of MS is also underway and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Here are the therapies to keep an eye on as we move forward into 2013. BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even be protective against damage to the brain and spinal cord.
Two large phase III studies (the DEFINE trial and the CONFIRM trial, respectively) found that BG-12 significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision expected within the year. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta 1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is
nationalmssociety.org | 1-800-344-4867
powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders. Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsingremitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits. Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.
Making choices When we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of
13 newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at www. nationalMSsociety.org/signup, or visit www. nationalMSsociety.org/research. n Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter.
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MS connection: Spring 2013
Saturday, April 13, 2013 Raven Golf Club 3636 E. Baseline Road Phoenix, AZ 85034 11:30 am Registration - 1:00 pm Shotgun Start The cost of the event is $600 per foursome or $150.00 per player.
Each player will receive a player pack, green fees, range balls and dinner. If you’re not a golfer, come and join us for dinner and the silent auction. The cost is $40 a ticket. The Irish Mist Golf Scramble will be benefiting the National Multiple Sclerosis Society, Arizona Chapter’s Direct Financial Assistance Program. The Direct Financial Assistance Program was developed to improve the quality of life for people living with multiple sclerosis by intervening in an emergency situation to provide temporary financial assistance. For more details, visit: www.irishmist4ms.org or call Tracy Anthony at: (602) 320-9082
Show your support for the Arizona MS Society While you save money and earn cash back! The Arizona Chapter of the National MS Society is participating in an exciting new fundraising program. The Chapter
now has its own shopping website. The money you spend at www.Shop4MS.org help support the Arizona MS Society and you earn cash back on qualified purchases at the same time.
The website has hundreds of exclusive products for health & nutrition, beauty, home & garden, and pet care. There are more than 50 million products from 3,200 affiliate stores, including Macy’s, Bloomingdales, JCPenney, Best Buy, Staples, The Home Depot, Target, WalMart, Walgreens and thousands more.
Support the Arizona MS Society by shopping at www.Shop4MS.org. [For information: email info@feel‐healthy.net or call (602)‐384‐8582]
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mark your
calendars
GET CONNECTED
March 11-17: MS Awareness Week 15: No Boys Allowed, Prescott 20: No Boys Allowed, Phoenix 23:
Moving Forward: Program for the Newly Diagnosed
April: 13:
Irish Mist Golf Tournament
25:
WAMS Luncheon
May: 18-19: Bike MS: Ride the Vortex See more events and programs at http://calendar.arizonaMS.org.
Visit MSconnection.org today to connect with other people affected by MS. Share you story. Share your connection.