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spring 2014 ARIZONA Chapter

MS Connection Newsletter

Get Involved with bike MS page 4

INSIDE 3 THIS ISSUE:

what a difference a day makes

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New Society website launches!

Mark your calendars

Women against MS luncheon

Irish Mist Golf Scramble


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MS connection: spring 2014

A note FROM the chapter president

ALK

NMSS

WALK

BIKE

NMSS

take your involvement to the next level: Join in as an event participant, volunteer or donor! NMSS

BIKE

How are you going to celebrate MS Awareness Week? CHALLENGE

BIKE Spring is inCHALLENGE the air, and though we didn’t suffer a cold winter like some of the rest of the country, we’re still looking forward to warm days and plenty of activities to support multiple sclerosis. We’re celebrating MS Awareness Week March 3-9 and there are plenty of ways you can get involved to help us spread MS awareness this week and beyond! • Use your story and voice by becoming an MS activist. Our advocates will leave their mark on Capitol Hill in Washington, D.C. to support this year’s public policy issues. You can also join the Action Alert email list to get alerts when an important issue or piece of legislation calls for your immediate attention.

• Volunteer! There are tons of ways to volunteer at the chapter! CHALLENGE • Join us at an upcoming event! Join a community coming together to support those affected by MS.

Connect with us online at: arizonaMS.org facebook.com/arizonaMS twitter.com/AZMSSociety instagram/arizonaMS

on the cover: Get involved with Bike MS!

• Get connected with other people affected by MS at MSconnection.org. You can share why you connect to create a world free of MS with a super cool app! Whatever you decide to do, know that it really makes a difference! Keep reading to learn more about how you can get involved today! Take care, Jim Elfline Chapter President


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nationalmssociety.org | 1-800-344-4867

MS service day

what a difference a day makes Saturday, March 22, 9:00 AM Locations Vary What a Difference a Day Makes: MS Service Day is a way that volunteers, businesses, civic organizations, and family and friends can make a change in the lives of people with multiple sclerosis by completing projects for them. Volunteers will be assigned a specific project location, where together with staff members, will complete the wish list of someone living with MS; we need your help to make this happen! For more information or to get involved as a volunteer, please contact Erika Edholm at 480-455-3959 or erika.edholm@nmss.org. If you are a person living with MS and would like assistance doing household tasks or improvements (yard work, painting, organizing, cleaning, heavy lifting, etc.) please contact the chapter to receive an MS Service Day Application! Applications are due by Saturday, March 15th.

National Multiple Sclerosis Society

Arizona Chapter 5025 E. Washington St., Ste. 102 Phoenix, AZ  85034 1-800-344-4867

Chairman: Marion Kelly Chapter President: Jim Elfline Editor & Design: Jessica Ishikawa Layout: April Nielsen Š 2014 National Multiple Sclerosis Society, Arizona Chapter

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.


4 FUNDING THE MISSION

JOIN BIKE MS! SO MANY WAYS TO GET INVOLVED!

MS connection: spring 2014

Fundraiser for Bike MS. Every year he writes donation letters, always with a theme, asking friends and family to support him. This is the first year Brunell won’t be able to ride in Bike MS due to a family wedding, but he plans to fundraise and participate as a virtual rider. Although Brunell has no direct connection to MS, he has a great family of like-minded supporters and pledgers who are all willing to engage in this battle in the hopes of aiding treatments, cures, and life assistance for those with multiple sclerosis.

START A TEAM

BE A Virtual Rider Back in 1978, George Brunell (pictured above) was reintroduced to bicycling as an adult. He fell in love with the sport, and hit the road with a passion. Cycling is disarming; people are willing to engage with you devoid of barriers that strangers might otherwise bring. The joys are innumerable. His first involvement with Bike MS was at the Best Dam Bike Ride in 1987, the second year of the event, and he’s participated in the event ever since. “Knowing that I could spin the cranks and raise funds to help support such a cause meant my joy was being multiplied beyond the patches of highway that I would pass,” Brunell said. Over the years his fundraising expanded beyond the minimum pledge, consistently a Top

Kirk Hazen was invited to ride the Arizona MS 150 back in the 80’s, when the ride was a twoday event from Phoenix to Parker. Hazen was so impressed by the ride itself and the support provided by the MS Society and its volunteers, he rode as an individual for 5 straight years. He took a few years off and then had an idea… why not see if Bike MS could be a teambuilding activity for his work group at American Express. Hazen invited colleagues to participate in Bike MS, and that was the beginning of the team, Ride For Life (pictured below).


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nationalmssociety.org | 1-800-344-4867

The team has grown over the years, and includes AMEX employees and ‘friends and family’. Each year, the team trains together every weekend, starting about 3 months out. “I encourage my team to ‘be bold’ regarding raising money for the event… I’ve learned that people will give if you present them with the facts about MS and simply seek their partnership in Bike MS, as a ride sponsor,” Hazen stated. This year, Ride for Life is staging their 2nd Annual Golf Tournament at Stonecreek Golf Club, a fun event with prizes, lunch and hopefully, a significant donation to the MS Society.

knowing in their hearts, that one day a doctor will not have to say to a patient “You have multiple sclerosis” because of the work they have done. “Our involvement is so rewarding because we know there are many people and children who live each day with MS and the Bike MS dolars go to support research, assistance and programs for those living with MS in Arizona.”

BE A VOLUNTEER Ron and Johanna Warner have been volunteering with the Arizona Chapter for more than 17 years and are wonderful volunteer leaders for this year’s Bike MS: Ride the Vortex. They became involved when a friend told them about the Bike MS events and that volunteers were needed. When they think back, “it seems like a short time ago”, but they believe when you are doing something for a good cause – and one you love – time is not measured. Their first volunteer experience was to unload and watch over approximately 1,500 bikes being transported by tractor trailer trucks for the MS 150: The Best Damn Bike Ride. As they handed the bicyclist their bike, they could not help but admire the person for what they had accomplished and for their dedication to finding a cure. It is the participants, volunteers and staff that make the Warners come back for more…year after year. The best part of volunteering for the Warners is

REGISTER TO RIDE OR VOLUNTEER TODAY! Bike MS Ride the Vortex registration is open! Join us May 17 & 18 for 30, 50, 55, 70 and 90 mile routes. Learn more at bikeMSarizona.org.


6 Living with ms

CONNECT AT:

www.nATIONALMSSOCIETY.org The National Multiple Sclerosis Society’s website at www.nationalMSsociety.org connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. To that end, many exciting changes to the site have taken place to improve your ability to connect to:

INFORMATION Updated navigation, new content and improved searching help you find what you’re looking for faster.

EACH OTHER Our growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.

THE MS MOVEMENT Several new features make joining the MS movement even more possible. These features include: a “My Profile” section where you can

MS connection: spring 2014

access your profile information, set preferences and track your involvement; a mobile-friendly design that lets you view the site from your smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.

You Talked, We Listened Many of you – people living with MS, friends and family members, event participants, volunteers, donors and professionals – contributed ideas and input toward the new site. You shared what information matters most to you, tested the site as it was developed and made suggestions – you even helped get rid of a few “bugs.” Now, the next generation of www.nationalMSsociety.org is designed to help you: • Find relevant information, programs, services, and resources; • Connect with others, share information and get support; • Participate in events, advocate for change, raise awareness, champion research, and discover more ways to engage. Take some time today to tour the new site at www.nationalMSsociety.org, and let us know what you think. If you happen to find a bug that snuck through the cracks, let us know that too.


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nationalmssociety.org | 1-800-344-4867

save these dates!

events calendar No Boys Allowed - Phoenix Wednesday, April 16 6 PM – 8 PM Disability Empowerment Center 5025 E. Washington St. Cost: $5

Boys Night Out - Phoenix

Tuesday, April 8 6 PM – 8 PM Disability Empowerment Center 5025 E. Washington St.

Free From Falls - glendale

Thursdays, March 27 – May 15 10 AM – 12 PM HealthSouth Valley of the Sun 13460 N. 67th Ave. Fee: $60 for the 8-week course Application submission required by March 20.

lunch bunch - Bullhead city

Wednesday, March 12 & Wednesday, April 9 12 PM Pizza Hut 1855 Arizona 95 PLEASE NOTE: The Bullhead City Walk MS event has been cancelled.

20s/30s squad - phoenix

ms service day

MS Moving Forward: Newly Diagnosed Seminar

aqua exercise - Flagstaff

Thursday, March 27, 2014 7 PM

Saturday, April 5 9 AM – 11 AM NMSS Arizona Chapter Office* in the Disability Empowerment Center (DEC) 5025 E. Washington St., Ste. 102 Phoenix *Also available via teleconference for those outside the Phoenix Metro area.

20s/30s squad - tucson Tuesday, March 11 7 PM – 8 PM Maloney’s Tavern 213 N. 4th Ave.

Saturday, March 22 9 AM Locations vary; contact Erika Edholm at erika.edholm@NMSS.org for more information. Wednedays 12 PM – 1 PM NAU Wall Aquatic Center 705 S. San Francisco St., Fees: $2/class per-week; $3/parking. To register, contact Sherry at (928) 855-5379.

Stretch and Laugh Chair Yoga - Flagstaff

Wednesdays 10:45 AM – 11:45 AM Thorpe Park Community Center 245 N. Thorpe Rd. $2 per class To register, contact Melinda at (928) 527-8604.


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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 CENTRAL PHOENIX (DAY)

2nd Monday of the month, 10 AM First United Methodist Church 5510 N. Central Ave. Judy: (602) 953-9180

EAST VALLEY

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

FLAGSTAFF

Please call for meeting time & location; Kathy: (928) 380-5253

GILBERT - Active with MS

Last Wednesday of the month, 5 PM Banner Neuro Wellness 207 N. Gilbert Rd., Ste. 205 Mark: (480) 518-5971 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

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

KINGMAN

3rd Saturday of the month, 12:30 PM Kingman Regional Medical Center Cholla Room 3629 Stockton Hill Rd. Pati: (928) 530-7982

NORTH SCOTTSDALE

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

PRESCOTT VALLEY/PRESCOTT

2nd Thursday of the month, 11 AM Residence Inn - Lee Boardroom 3599 Lee Cir., Prescott Alan: (928) 710-1257 or Larry: (928) 775-7334

Sierra Vista

4th Wednesday of the month, 11 AM Country House Cafe 4373 Arizona 92 Judie: (520) 378-4400

SIGNIFICANT OTHERS

Please call for meeting time & location. Lois: (602) 672-9234


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nationalmssociety.org | 1-800-344-4867

SUN CITY

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

YUMA group empowerment for ms 3rd Saturday of the month, 9:30 AM Yuma Rehabilitation Hospital 901 W. 24th St. Crystal: (520) 325-0755

TUCSON CENTRAL GROUP

Please call for meeting time & location: Crystal: (520) 325-0755

TUCSON MS middle ablers - Age 40 + Last Wednesday of the month, 6 PM - 8 PM Northwest Neurospecialists 5860 N. LaCholla Blvd. (520) 742-1833

TUCSON NORTHWEST GROUP

2nd Wednesday of the month, 10 AM Casas Adobes Congregational Church 6801 N. Oracle Rd. Cindy: (520) 887-8905 or Carol: (520) 797-0405

TUCSON young & unstoppables GROUP Ages 13 – 20 Last Tuesday of the Month, 6:00-8:00pm Northwest Neurospecialists 5860 N La Cholla Blvd. (520) 742-1833

DON’t SEE A support group IN YOUR AREA? Join us for a statewide skype group! Eldene: (480) 860-9359 1st Tuesday of the month, 3 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.


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MS connection: winTER 2013 National Multiple Sclerosis Society Arizona Chapter 5025 E. Washing ton, Ste. 102 Phoenix, AZ 85034

SUPPORTING THE MISSION

2013

also implemented a Newly Diagnosed Program. a Caregiver Conference, and several new exercise programs, including Yoga for MS.

le Stories of

Discover Multip

To sponsor the WAMS event or purchase tickets, please contact Brandee Wessel, Development Director, at (480) 455-3958 or via email at brandee.wessel@nmss.org. Presented by:

Thanks to the funds raised by the WAMS luncheon the National MS Society, Arizona Chapter offers an extensive variety of programs, services and resources for people living with MS, including family members, caregivers and other members of their support systems. We have adapted our community programs to include support groups, including but not limited to 20’s - 30’s Squad, No Boys Allowed and Boys Night Out. These programs cater to the specific needs of our clients in the community. We have

April 29, 2014

Discover Multip le Stories of

The Women Against MS Luncheon is scheduled for Tuesday, April 29, 2014 and will be held at the Arizona Biltmore Resort & Spa. Guests will share the joys of a fine lunch while watching an inspirational program emceed by Tara Hitchcock. Bobbi Doorenbos will also be joining us as our guest speaker. Bobbi was one of the first female F-16 Fighter Pilots in the US, and has flown missions over Afghanistan and Iraq. With her diagnosis of MS in 2004, she was grounded from flying the F-16, and went on to serve as a White House Fellow under President George W. Bush, and as a Special Assistant for Defense and Intelligence to Vice President Joe Biden. She is currently the Commander of the 214th Reconnaissance Group where she now flies the MQ-1 Predator at Davis-Monthan Air Force Base in Tucson, AZ. We anticipate more than 400 attendees at this year’s luncheon.

Presented by:

WOMEN AGAINST MS

9th Annual


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nationalmssociety.org | 1-800-344-4867

Money Matters

Where to find employment help By Steven W. Nissen, MS, CRC

Are you considering changing jobs? Have you been out of the workforce, but are thinking about returning? Do you have questions about disclosure in the workplace or how to accommodate symptoms on the job?

Call an MS Navigator An MS Navigator can address many of your employment-related questions and refer you to helpful resources, including employmentrelated publications and videos. Call the Society at 1-800-344-4867 and visit www. nationalMSsociety.org/employment.

JAN can help The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy that can provide technical assistance and support regarding accommodations, the Americans with Disabilities Act, disclosure and self-employment for people with disabilities. Contact JAN at 1-800-526-7234 or visit www.askJAN.org for a wide variety of resources and publications.

In your state Each state has a vocational rehabilitation agency whose goal is to assist individuals with disabilities to gain and maintain employment. For a full listing of vocational rehabilitation agencies, visit askjan.org/cgi-win/TypeQuery.exe?902.

One-stop services The purpose of local one-stop employment centers is to assist job seekers, with or without disabilities, in finding employment. However, if you choose to self-identify that you are living with MS, the office may be able to provide some additional support services. To find your closest center, visit www.servicelocator.org.

Targeted recruitment Several online resources feature employers who are actively recruiting qualified people with disabilities, including: • Equal Opportunity Publications Career Center - www.eop.com/career.php. • GettingHired - www.gettinghired.com. • National Business & Disability Council - www.viscardicenter.org/services/nbdc. Working with MS is possible and you don’t have to do it alone. Get connected to stay on top of your employment options. Steve W. Nissen, MS, CRC, is the Society’s senior director of Employment & Community Programs.


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MS connection: spring 2014

FUNDING THE MISSION

WHO DOESN’T LOVE TO EAT & MINGLE?

This year you can enjoy Cooks and Chords in Phoenix and in Prescott! The 2014 Phoenix Cooks & Chords is the 8th Annual National MS Society, Arizona Chapter tasting event. This year’s event will be taking place on Saturday, September 13, 2014 in Mayo Clinic’s beautiful reception area nestled among the foothills of scenic Scottsdale. Stations of chef-prepared dishes paired with delicious spirits and wonderful music will tantalize guests as they browse packages in our raffle and silent auction. Guests will also enjoy an inspirational program

FUNDING THE MISSION

that will include an update on MS research by a Mayo Clinic Neurologist. Please contact Brandee Wessel to get involved with this event at (480) 455-3958 or brandee.wessel@nmss.org.

beautiful, historic prescott

The Prescott Cooks and Chords will be held Saturday, September 20, 2014. Other details are still in the works which is why we need your support. Whether you want to attend, know a sponsor or have an item to donate for the auction, please contact Lynette Hoyt at 480-455-3962 or lynette.baker@nmss.org. .

GET READY TO WALK IN TUCSON ON MARCH 8!

Spring is almost here, and so is our 21st Annual Tucson Walk MS! Walk with us on Saturday, March 8th at Reid Park in Tucson. Registration starts at 8:00 am with the walk to begin at 9:30 am. We are expecting over 1,000 participants with 60 Teams to join in this amazing community, fundraising event to help us come closer to finding a cause and cure to MS. If interested or have questions, please contact Crystal Blickfeldt, Community Development Manager, at (520) 325-0755 or email at crystal.blickfeldt@nmss.org. Get registered as a walker or volunteer and donate today at walkmsarizona.org.

Thank you to those interested in the 2014 Bullhead City Walk MS. Unfortunately, this walk, scheduled for March 15th, has been postponed until March 2015. Please check out our upcoming programs that are taking place in the area on our website at arizonaMS.org.


nationalmssociety.org | 1-800-344-4867

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LIVING WITH MS

smoking and you their life were significantly more likely to be in the most severely disabled quartile of the MS severity score. Also smokers are more likely to develop moderate disability in at least one function and more likely to progress to the point they required use of a cane to walk. Ex- smokers had a lower risk for disability than current smokers.

by Jeanette Wendt, M.D. Since the first Surgeon General of the United States report on the health consequences of smoking 50 years ago we have learned many consequences of smoking and secondhand smoke. Over recent years we are learning that smoking has negative consequences for autoimmune disorders and specifically for multiple sclerosis (MS). Tobacco smoking has been demonstrated to be a factor in the development of MS. A study presented at the American Academy of Neurology demonstrated that individuals who started smoking before the age of 17 had a 2.7 times increased risk of developing multiple sclerosis compared to nonsmokers. A Swedish study showed that women who smoked had an almost 1-1/2 times higher risk of developing MS as those who did not. In men the risk was nearly 2 times as high. A recent study from the UK demonstrated that tobacco use is associated with greater disability in MS. Individuals who had smoked one time in

The results of several other studies suggest that smoking increases the severity and progression of MS. Also, smokers were more likely to have problems with motor functioning, this included walking and taking part in daily activities. There are many health reasons to stop smoking or to not start to smoke tobacco. Now we are learning that the adverse effect on multiple sclerosis, both its course and the potential for developing it is another to add to a long list.


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MS connection: spring 2014

FUNDING THE MISSION

7th annual irish mist golf scramble

Introducing

Dr. Jeanette Wendt Neurology

Practicing out of NNS Clinical Research Now accepting MS patients at NNS

Join Us for the 7th Annual Irish Mist Golf Scramble in Phoenix! When: Saturday: April 26, 2014 Where: Raven Golf Club 3636 E Baseline Road Phoenix, Arizona 85042 Time: 11:00 a.m. Registration 12:00 p.m. Shotgun Start Cost:

$150 per player – ($600 per 4-some)

Includes Greens fee – Player Pack – Range balls – Heavy hor d’oeuvres – 2 Drink Tickets All monies go directly to the Emergency Financial Assistance Program for the Arizona Chapter of MS. A resource for Arizonans living with MS. Come join the fun by signing up at irishmist4MS.org.

We offer an on-site infusion center as well as MS and Alzheimer’s support groups — please call for details.

Call today 520.742.1833 info@nnsresearch.com | www.nnsresearch.com 5910 N. La Cholla Blvd. | Tucson, AZ 85741


Staying Committed

___________________________ |

nationalmssociety.org 1-800-344-4867 A program for people living with MS and their Care Partners

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You are invited to attend You – are invited to attend NEW: 3 – times-a-week COPAXONE (glatiramer-acetate injection) 40 mg Multiple Sclerosis (Ms): Staying Committed   Speaker: Darin Okuda, MD

A program for people living with MS and their care partners University of Texas Southwestern Medical Center, Dallas TX Tuesday, March 4th at 2:00 p.m. to 4:00 p.m. NEW! 3-times-a-week COPAXONE (glatiramir acetate injections) 40mg Chompies: 9301 E. Shea Boulevard, Scottsdale, AZ 85260 *Dessert and Darin CoffeeOkuda, will be served Speaker: MD University of Texas Southwestern   Medical Center - Dallas, TeXas 2pm – 4pmMarch 5th at 6:00 –8:00 p.m. Tuesday, March 4th at Wednesday, 11:00 a.m. Wednesday, March 5th at 9:00 @ Chompies: 9301 E. Shea Blvd., Scottsdale, AZ  85260 Airport Marriot Hotel Rio Vista Park and Recreation Center *Dessert and Coffee will be served 1101 N. 44th Street 8866 W. Thunderbird Road th th at 9am – 11am at 6 pm – 8pm Wednesday, March Wednesday, March Phoenix, AZ585008 Peoria, AZ585381 @ Rio Vista Park & Recreation Center @ Airport Marriot Hotel *Dinner will be served *Breakfast will be servedRd. 8866 W. Thunderbird 1101 N. 44th St. Phoenix, AZ  85008 Speaker: Darry Johnson, MD *Dinner will be served *breakfast will be served Arizona Neurological Institute Scottsdale/Flagstaff, AZ th Speaker: Darry Johnson, MD p.m. Tuesday, March 11 at 6:00 p.m. to 8:00 Arizona Neurological Institute - Scottsdale/Flagstaff, Arizona Little America at 6 pm – 8pm Tuesday, March 11thAvenue 2515 E. Butler @ Little America Flagstaff, AZ 86004 2515 E. Butler Ave. *Dinner will AZ be served Flagstaff, 86004 Peoria, AZ  85381

*Dinner will be served Speaker: Jeanette Wendt, MD Northwest Neurospecialists Clinical Research Speaker: Jeanette Wendt, MD Tucson, Arizona Northwest Neurospecialists Clinical Research - Tucson, Arizona th th a.m. to 11:00 a.m. at 9:00 Saturday, March 29 Saturday, March 29 at 9am – 11 am Sheraton Tucson Sheraton Tucson 5151E. E.Grant Grant Rd. 5151 Road Tucson, AZ  85712 Tucson, AZ 85712 *breakfast willbe beserved served *Breakfast will

RSVP: 1-800-887-8100 RSVP: (800) 887-8100 www.SharedSolutionsPatientPrograms.com www.SharedSolutionsPatientPrograms.com


Arizona Chapter 5025 E. Washington St. Ste. 102 Phoenix, AZ 85034

mark your

calendars March 3-9: MS Awareness Week 8: Walk MS: Tucson 22: MS Service Day April 26: Irish Mist Golf Tournament 29: WAMS Luncheon May 17 - 18: Bike MS: Ride the Vortex

See more events and programs at arizonaMS.org


MSConnection Spring 2014