SUMMER 2016 MICHIGAN CHAPTER
MS CONNECTION NEWSLETTER
INSIDE 4 THIS ISSUE
MS STATE ACTION DAY & FINANCIAL ASSISTANCE
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RESEARCH: A RARE GLIMPSE
10&11 13 SCHOLARSHIP WINNERS
A HELPING PAW
OFF MY WAVE. O cea n B ea c h na t i v e a n d l o c a l s u r f l e g e n d Ste v e B e t t i s w a s d ia g n o s e d w i t h MS in 20 0 6 . A l t h o u g h s u r f in g i s s t ill ce n t r a l to h i s li f e , h e h a s n’ t b e e n a b l e to g e t o u t o n t h e w a te r in 10 y ea r s . F o r a ma n w h o s e da il y r o u t in e a lw ay s in c l u d e d a f e w w av e s , m o r e t ha n a d e c a d e o u t of t h e s u r f i s j u s t to o l o n g . T h i s i s w hy t h e Na t i o na l MS S o c i e t y tea m e d u p w i t h h i s b u d d y Ro b e r t “ W in g n u t ” Weav e r a n d u s e d v ir t ua l r ea l i t y to g e t Ste v e b a c k o n h i s w av e . S e e t h e ir e x p e r i e n ce a n d f in d o u t h ow y o u c a n s h a r e y o u r s a t W e A r e S t r o n g e rT h a n M S .o r g .
Together We Are Stronger
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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DETROIT
BUILT FOR
S H G U A LLAUGHS #GETDIRTYDETROIT
MuckFest® MS Detroit is the FUn mud run with the best obstacles. No special training required! We’re also on a mission to end multiple sclerosis. Have a blast and make a difference!
Saturday, August 6, 2016
Willow Metropark Just south of the Detroit Metropolitan Airport 23200 S. Huron Road New Boston, MI 48164
REGISTER AT MUCKFESTMS.COM
© 2016 Event 360, Inc.
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MS CONNECTION: SUMMER 2016
FINANCIAL MS STATE ACTION DAY ASSISTANCE PROGRAMS & SERVICES
The Financial Assistance program is happy to offer financial assistance for window air conditioners and camp scholarships this summer.
MS activists spoke ardently with Michigan legislators about issues important to people with MS during the eighth annual MS State Action Day. Meetings with forty representatives and senators were strengthened by the experience and diversity of the participants. Two-thirds of the participants have previously attended State Action Day. We were honored with a presentation by Senator Vincent Gregory, the sponsor of a bill to create a tax incentive for people who improve the accessibility of their home. Activists thanked Senators for recently passing the bill in the Senate. They explained the importance of home accessibility during meetings with Representatives. They also advocated for home care available through MI Choice, the Home and Community Based Medicaid Waiver program. We need more people to tell legislators about the need for home accessibility. Join the MS activist network to take action and learn more about state and national issues. Go to nationalMSsociety.org/Get_Involved/ Advocate-for-Change.
If you are considering attending a camp that is geared towards people with MS or other disabilities, we may be able to help. There are no income restrictions for camp scholarships. One camp many adults with MS have attended over the years is Bay Cliff Health Camp located in Big Bay in the Upper Peninsula. Bay Cliff hosts Camp Independence, a one week camping program designed for people with MS and other disabilities. A wide variety of activities and special events are available for campers. For more information on Bay Cliff’s Camp Independence, call 906-345-9314. If you are accepted to Bay Cliff or another camp, please call 800-344-4867, option 1 for information regarding financial assistance and to request an application. As summer approaches, keeping cool is important for many people with MS. If you are in need of a window air conditioner, call today for a Financial Assistance application. For those who qualify, a window air conditioner is sent right to your home (installation is not provided) so you can have it up and running quickly! Call 800-344-4867, option 1 to speak to an
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
MS Navigator for more information about our Financial Assistance program or to request a Financial Assistance application.
UPCOMING EVENTS Gateway to Wellness
Thursdays, Aug. 25 - Sept. 29 6:30-8:30 p.m. Grand Blanc This six-week wellness program focuses on exercise, activities to promote wellness, selfmanagement and finding balance in your life. Participants learn how to make informed decisions about lifestyle issues, medical care, and exercise and practice setting realistic goals. This program teaches the skills needed to balance work, play, family and self-care activities while developing friendships with other participants. Limited to 15 participants. Request for applications begin in July.
Nutrition and Healthy Eating
Aug. 11 Port Huron Registration will begin in July Mindfulness Aug. 27 Bath Registration will begin in July
Western Region Fall Conference Sept. 24 Grand Rapids Registration will begin in August Please call 1-800-344-4867, option 1 for more information and to register. North American Education ProgramsManaging Bowel and Bladder Issues Saturday, July 16 10 a.m. Mount Pleasant Experiencing bladder and bowel symptoms may prevent someone from interacting with their community, friends and family. As a result, MS-related bladder and bowel symptoms may go unaddressed, diminishing confidence, independence or leading to other health issues and social isolation. This free program will include a video presentation featuring a variety of healthcare professionals and researchers in their field to address this very important topic. A question and answer session led by Dr. Kent Kirby will follow this presentation. The program will be available to the public and presented by the Isabella Self-Help Group. Non-Group members are welcome to join the program. Please contact Christy Bomba at 989-249-1184 for more information and to RSVP.
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MS CONNECTION: SUMMER 2016
RESEARCH
A RARE GLIMPSE A new study provides a rare glimpse into the very early stages of multiple sclerosis, even before symptoms begin. What’s known as clinically isolated syndrome, or CIS, describes a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation and demyelination on one or more sites on the brain and spinal cord. Typically if an MRI scan reveals lesions similar to those seen in MS, the likelihood is higher that the person experiencing CIS will go on to develop MS; conversely, if CIS is not accompanied by MRI-detected lesions, he or she has a lower likelihood of developing MS.
A “SILENT” SYNDROME Some people have been found to have clinically “silent” lesions, meaning that while they aren’t experiencing symptoms, doctors have discovered areas of inflamed or damaged tissue during the course of an MRI scan that the person had for unrelated reasons. Researchers have been increasingly focusing on this phenomenon, called “radiologically isolated syndrome,” or RIS, which – like CIS – may or may not develop into definite MS. The study, which was published in Annals of Neurology (December 2015), examined MRI scans of 453 people with RIS. Of this group, 128 (28 percent) went on to develop a first neurological event consistent with CIS or relapsing MS while approximately 12 percent
STUDIES USING MRI SCANS MAY HELP IDENTIFY MS EARLIER. went on to develop primary progressive MS, which mirrors the frequency of developing this form of the disease as seen in other studies. Those who developed primary progressive MS were more likely to be men, were significantly older, and were more likely to have MS-like lesions in the spinal cord compared to those who went on to develop CIS or relapsingremitting MS. This research may help eventually point the way to finding ways to identify and track primary progressive MS earlier. This in turn may help to improve access to care for those living with primary progressive MS. To learn more, visit nationalMSsociety.org and search for “diagnosing MS.” Stay up to date on MS research by signing up for MS eNews: go to nationalMSsociety.org/ signup. n Clinical trials of specific disease-modifying therapies (DMTs) have led to approvals for their use to treat CIS. However, there is debate as to whether people with RIS would benefit from early treatment with DMTs.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
SECOND ANNUAL MS TIGER GAME Sunday, Sept. 11 Team up with the Tigers and help “Orange Out” Comerica Park by purchasing tickets to the game at 1:10 p.m. against the Baltimore Orioles. Each ticket package includes:
L. BARGE OPEN 2016 CHARITY GOLF OUTING Saturday, Sept. 17 This year marks the ninth annual outing raising more than $100,000! We hope all golf enthusiasts will consider attending this year and help celebrate this remarkable milestone. The outing will take place at Fieldstone Golf Club of Auburn Hills (1984 Taylor Rd, Auburn Hills, MI 48326). The day begins at 7 a.m. with registration and the shotgun start will be at 8:30 a.m. The outing fee includes an 18 hole foursome scramble with cart, continental breakfast, open driving range and practice facility, lunch at the turn, beverage tickets, putting contest entry, two entrée buffet dinner, door prizes, contests, silent auctions and team trophies. For more information, to purchase tickets or learn about sponsorship opportunities, please call 248-582-3430 or email Admin@LBargeOpen.com. You may also visit the event’s website at LBargeOpen.com.
• Upper Box Infield, Upper Reserved or Lower Baseline Box ticket • Tigers/MS Society t-shirt • $5 donation to the MS Society Tickets MUST be purchased through this link: http://m.mlb.com/det/tickets/info/ mssociety For information on groups of 15 or more, contact Jeremy Hostetter with the Detroit Tigers at Jeremy.Hostetter@tigers.com.
TEE UP TO FIGHT MS Golf MS is an opportunity for golf enthusiasts who love the game of golf to help create a world free of multiple sclerosis. Commit to raising $100 or more and receive two FREE rounds of golf at one of our partner courses in Michigan, May – September. For a complete list of partner courses and to register for Golf MS, visit golfMSmi.org.
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MS CONNECTION: SUMMER 2016
THE NECESSITY OF HOPE “Everybody tolerates different things,” emphasizes Jennifer Rios, 33, who was diagnosed with multiple sclerosis in 2000. “I found what worked for me.” That includes a natural diet, supplements and an intense type of physical training called the Barwis Method. “It’s the hardest work I’ve ever done,” says the Dearborn, Michigan, resident of her training sessions three times a week, but she is determined to walk again after she broke her ankle a few years ago. “My brain lost communication with my legs,” Rios says. “But I’ve gotten so much stronger. I’m not walking yet, but I can move my legs on my own again.” She says at first she was the only person in a wheelchair at the facility where she works out, and that it was “intimidating.” But she was determined to push forward. “If you work hard, maybe things can change. When you have a disability, being able to do some things is so huge. I may only move my leg five times, but it feels like I’ve run a marathon.” Now other people who use wheelchairs have joined the facility, including another woman with MS. Rios has been chronicling her sessions and other aspects of her life with MS on her blog, notspinningmywheels.com. There she writes about how she was diagnosed at 18 and that one of the first decisions she made after
JENNIFER DIAGNOSED IN 2000
JENNIFER RIOS, CENTER, WITH HER SON AND MOTHER. her diagnosis was to have a baby. Today, she and her son Sean, now 14, participate together in Walk MS. “We’re a great team,” she says. Sean even inspired her career as a teacher and reading specialist. “I watched him learn how to read and thought, I can do this.” “My son and my mother are my two helpers,” Rios says. In fact, she jokingly recalls a recent moment where she asked her mother, who lives a 10-minute drive away, “Are you my ‘caregiver’? She just laughed. I had really thought we were just hanging out!” “Sometimes MS is so difficult to live with, but what else am I going to do?” Rios says. “I need hope because this disease is so mean. I have to hold onto that hope. What I’m doing gives me hope that I can control my life.” n
WHAT YOUR NATIONALMSSOCIETY.ORG | 1-800-344-4867 DONATIONS ACCOMPLISH In 2015, the Michigan Chapter’s special events raised Here is how that money was used to help people living with MS:
FINANCIAL ASSISTANCE The Chapter provided $107,500 in financial assistance to people living with MS to help meet quality of life needs.
$
6 SCHOLARSHIPS
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$3,128,284
This money went to: Heating & Cooling Homes
Home & Car Modifications
Durable Medical Equipment
Accessibility
Home Care
Wheelchairs & Motorized Scooters
ADVOCACY
We provided scholarships to college-bound students from families living with MS in our Chapter area.
Over 2,270 ACTIVISTS working to positively shape the policies and programs that impact people living with MS.
40 SELF-HELP GROUPS
LEGAL CLINIC 36 CHAPTER MEMBERS received legal advice on matters related to their MS.
TELE-LEARNING SERIES 16 TELE-LEARNING PROGRAMS providing education on MS related health and quality of life issues.
RESEARCH NOW $2,161,278 DEVOTED TO RESEARCH geared toward stopping the disease, restoring what is lost, and ending MS forever.
RELATIONSHIP MATTERS 21 COUPLES improved their relationships by participating in the Couples Workshop.
FRIENDLY LISTENING A telephone network for people with MS who want support from their peers.
FAMILY GETAWAY 96 PEOPLE participated in a fun-filled and educational weekend in Frankenmuth.
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SCHOLARSHIP WINNERS
CONGRATULATIONS CLASS OF 2016 In addition to the physical and emotional toll, multiple sclerosis can have a substantial financial impact on a family. The direct and indirect costs of MS – including lost wages – are estimated at more than $70,000 annually, per household. This year, the National Multiple Sclerosis Society awarded more than $1.1 million in scholarship funds to 815 recipients nationwide. Scholarships range from $1,000 to $3,000 and recipients are eligible to reapply each year to be considered for a future award. The program is competitive; awards are not guaranteed. Since 2003, National MS Society scholarships have helped students affected by MS, whether the student, his/her parent, or both, have been diagnosed with the disease, pursue their desired college or technical school education. Scholarships can be applied to any year of undergraduate enrollment at an accredited post-secondary school. Applications are evaluated based on financial need, academic record, leadership and volunteer activities, a statement of educational and career goals, and letters of recommendation. Applicants also provide personal statements describing the impact MS has had on their lives. Whether they
hope to one day become a doctor or a nurse, an engineer or teacher, the 2016 MS Scholarship recipients all show a drive to succeed in their chosen fields of study. MS shouldn’t stand in the way of their college education. The National MS Society scholarship program helps lift some of the financial burdens experienced by families affected by MS. This year, six Michigan students are receiving scholarships. Two are 2016 high school graduates – Lauren Fletcher of Saginaw and Makenzie Schroeder of Flint. Four students are already in college. They are Angelica Cheeks of Dearborn Heights, Alex Wesphal of Livonia, Fred Ayres of Southfield, and Alyssa Zimmerman of Shelby Township. All of the above recipients were first time awardees, except for Alyssa Zimmerman. She is the first scholar in Michigan who re-applied for the scholarship and was selected. The National MS Society’s scholarship program exists to help qualified students with MS or who have a parent with MS achieve their dreams of going to college. Applications for next year’s scholarships will be available in October. For more information, visit nationalMSsociety.org and search for scholarships.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
LAUREN FLETCHER “Being diagnosed with MS has shaped me into the person I am today. Most kids do not go through a struggle like this in their lives, and they are lucky, but I also consider myself lucky.”
MAKENZIE SCHROEDER “MS is and will continue to be an equipped enemy, but there is no foe my family and I cannot defeat, or war we cannot strive above because we refuse to let MS get the best of us.”
ANGELICA CHEEKS “MS is a very life altering disease, but my belief is that I can succeed at anything as long as I don’t give up.”
ALEX WESPHAL “Sometimes in life you are handed things that you can’t change or control, and you just have to push through to reach your goals.”
FRED AYERS “My goal is for no parent to endure the torment of multiple sclerosis while raising a child.”
ALYSSA ZIMMERMAN “I hope to start a program here specifically for students with MS so they can be around people who are fighting the same uphill battle.”
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MS CONNECTION: SUMMER 2016
SAVE THE DATE 2016 SAVE THE DATE October 13, 2016
Honoring Burt Jordan Ford Motor Company Vice President, Global Vehicle and PT Purchasing & Supplier Diversity Global Product Development
Thursday, October 13 The Dearborn Inn, Dearborn, MI Dinner of Champions is the National MS Society’s cornerstone event and pays tribute to the vast network of generous corporations, organizations and volunteer leaders who are dedicated to making a difference in the lives of people living with MS. The proceeds from this dinner will help support the Society in its mission to mobilize people and resources to drive research for a cure and to address the challenges of the more than 18,000 people living with MS in Michigan. The festive evening will include a cocktail reception, silent auction, gourmet dinner and inspirational program, including the presentation of the Chairman’s Award to Burt Jordan of Ford Motor Company in recognition of his commitment and leadership in helping to create a world free of MS. For more information about Dinner of Champions, including sponsorship table packages and individual tickets, visit nationalMSsociety.org/mig or call 248-936-0342.
I RIDE WITH MS People who ride in Bike MS may do so to support family members, friends or co-workers who have been diagnosed with multiple sclerosis. But, there are also legions of participants who live, and ride, with the disease, despite challenges such as fatigue or weakness. I Ride with MS is a special Society program that recognizes Bike MS cyclists who are also living with multiple sclerosis. Anyone living with MS who is interested in cycling to support the MS movement can join the program, enjoy special day-of-event benefits and receive a complimentary “I Ride with MS” jersey. Sanofi Genzyme and MS One to One, and Primal Wear are proud supporters of the I Ride with MS program, available through all 100 Bike MS events nationwide. I Ride with MS participants are not only committed to cycling to create a world free of MS, but to increasing awareness. For more information or to register for the program, contact us at bike@mig.nmss.org!
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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A HELPING PAW “Venus the service dog helps Mike and Ann Bunting with many things, and one of them is participating on their Walk MS team, The Fighting Shamrocks, while wearing her special shamrock-patterned collar. “We’re always accepting people to be part of the team,” say the Trenton, Michigan, residents. Thirty-six years ago, Mike Bunting was diagnosed with multiple sclerosis. And, 10 years ago, the Buntings’ children decided it was time for some extra help. “While my daughter was at college,” remembers Ann, “she filled out an application for Mike to get a service dog.” After an interview to see what services Mike needed, the couple settled in for a two-year wait while Venus was trained to perform those services. “She opens the sliding door to the back yard, she gets things that I drop and she gets the phone for me. But her primary purpose is to help me if I fall or stumble,” says Mike, who now has secondary progressive MS. “She will seek out help,” adds Ann. “She comes to me and her tail will be going a mile a minute. She’ll paw me and then she leads me to Mike.” Like many service dogs, Venus also offers emotional support. “We take her virtually everywhere,” says Ann, which also makes her part of how they educate people about MS. “With Venus, people will talk to Mike. Without her, they don’t.”
MIKE DIAGNOSED IN 1983
FROM FETCHING THE PHONE TO RAISING AWARENESS ABOUT MS, SERVICE DOG VENUS IS A HUGE HELP TO ANN AND MIKE BUNTING. “We put up a little sign saying, ‘I’m bored,’” jokes Mike, who uses a wheelchair and will wait in it while Ann is shopping. “We try to have fun with it, but a lot of people don’t know what MS is. We didn’t know what it was when we first got it.” Recently, the Bunting family had to learn even more about the disease when their daughter, Rebecca, was diagnosed with it. “It was a shock,” says Mike. “We had been told the chance of our daughters getting the disease was slim.” Today, the family bands together even more. “We had a team for Mike, and now we have a team for Mike and Becky,” says Ann. “Venus always participates – people love her.” n
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MS CONNECTION: SUMMER 2016
Participants who attended gave the program a big thumbs up with comments including: • Our daughters looked forward to classes and we love that they are being educated about MS in an age-appropriate way. • I learned more than I thought possible. • Very glad to have participated this year as well as having my family involved with me.
Multiple sclerosis often has a significant impact, not only on the individual with the disease, but also on the family members and loved ones whose lives are interwoven with them. On April 2, a Family Getaway was held in Frankenmuth at the Bavarian Inn Lodge, where people with MS and their loved ones were given the opportunity to gain information and connect with others affected by multiple sclerosis. Tiffany Braley, MD, MS, from the Center for Comprehensive Care at the University Michigan gave a very well-received presentation on “Clinical Research Updates in Multiple Sclerosis.” Other presentations included Mindfulness and Caregiver Challenges and Opportunities. Fun, educational activities for children, ‘tweens and teens were conducted by Saginaw Valley State University graduate level occupational therapy and health science students. A fun time was had by all!
AFRICAN AMERICANS WITH MS CONFERENCE The African Americans with MS Conference held on March 12 in Detroit was a huge success. 160 people with MS and their families filled the room to its capacity. 37 percent of participants indicated they are attending an MS Society program for the first time. The main question we heard at the end of the day was, “When are you going to do this again?” Stay tuned.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
2016 EVENT DATES August 6 – Willow Metropark, New Boston Just south of the Detroit Metropolitan Airport
muckfestMS.com Great Lakes Register today for any Bike MS ride and save Breakaway 16% Ride with 2015discount code HAPPY2016 Mid Michigan – July 16-17 Fall Breakaway – Sept. 10 Bavarian Breakaway – Sept. 24-25
bikeMSmi.org
Grand Haven – September 10 Milford – September 11 Marquette – September 11 Lapeer County (formerly Imlay City) – September 17 Michigan Chapter walkMSmi.org Walk 2015
GET CONNECTED
NATIONAL MULTIPLE SCLEROSIS SOCIETY
Michigan Chapter nationalMSsociety.org/mi info@mig.nmss.org
Michigan Chapter 21311 Civic Center Drive • Southfield, MI 48076 • 1-800-344-4867 Chairman: Michael Killian Chapter President: Elana Sullivan Editors: Sarah Borst & Liz Trapp Design: Graphinity, Inc.
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© 2016 National Multiple Sclerosis Society, Michigan 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.
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Please check the appropriate box below, correct the label then return to National MS Society, Michigan Chapter ❑ Name change or misspelled ❑ Address change ❑ Remove from mailing list ❑ Received more than one copy ❑ Please send me my MSConnection via e-mail. My e-mail address is:
21311 Civic Center Dr. Southfield, MI 48076
The Golden Circle program recognizes the Michigan Chapter’s top annual donors, who give $1,000 or more directly or through an event. The Michigan Chapter strives to enhance Golden Circle members’ connection to the mission of the National MS Society. Throughout the year, members receive special opportunities and communications including invitations to exclusive speakers and receptions, chapter and research newsletters, and complimentary tickets to the Michigan Chapter’s Annual Meeting.
If you are interested in joining the Golden Circle, please contact Tammy Willis at 248-351-2190 or Tammy.Willis@nmss.org.