Fall 2013 michigan Chapter
MS Connection Newsletter 1400 Mile Ride to Get Closer to Cure for MS Tom Barnett left his home in Warren, Michigan on his bicycle July 2, 2013, beginning a 1,400 mile trip around the perimeter of the Lower Peninsula that would touch three of the Great Lakes – Lake Erie, Michigan and Huron. This ride, while a challenging adventure for 65 year old Barnett, was dreamed of and planned over a two year time frame. His focus was to raise a minimum of $2,500 for research and assistance to those living with MS while increasing awareness along his journey for multiple sclerosis. He trained for six months with a physical trainer to prepare his body and mind for this challenge. Barnett has four friends living with MS. They are Chris Bisby, Bill Goen, Lisa King and Larry Teuma. For three years, Barnett has ridden in
INSIDE 3 THIS ISSUE
WAYS TO GIVE: Give at the Office
Tom Barnett, Day 13, 422 miles traveled, Grand Haven, Michigan the West Michigan Bike MS event in Holland, Michigan, but he wanted to make a bigger impact. And a big impact indeed – Barnett is confident by end of September, he will have surpassed his original goal and will have raised over $5,000. The Macomb Daily in Macomb County where Barnett lives interviewed Barnett (Continued on page 10)
6&7 8 RESEARCH: Focus on MS Research
PROGRAMS & SERVICES: Program Announcements
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Fundraising: 2014 Event Dates
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On the Cover: Tom Barnett: 1400 Miles for one Cure Mailing Label Changes
Please check the appropriate box below, correct the label then return to National MS Society, MI Chapter q Name change or misspelled q Address change q Remove from mailing list q Received more than one copy q Please send me my MSConnection via e-mail. My e-mail address is: ____________________________
Connect with us online: Michigan Chapter nationalMSsociety.org/mig info@mig.nmss.org Like us: facebook.com/nmssmi facebook.com/walkMSmi facebook.com/bikeMSmi facebook.com/golfMS facebook.com/davinci Follow us: twitter@nmssmi.com Watch us: youtube.com/mignmss
MuckFest MS – A Great Success On August 3 on Belle Isle, MuckFest™ MS rallied more than 1500 participants, volunteers, and family and friends for a mucky romp through mud and obstacles in support of a world free of multiple sclerosis. Made with mud, sweat and cheers, the fivemile course featured a gauntlet of muck-filled mazes, pits and craters with over twenty gigantic steel obstacles. The fun didn’t stop when participants slid over the finish line. There was beer, great food and music in the MuckFestival area. There was even a specially-designed mucky play lot for the kids called Lil’ Muckers. And here’s the best part: participants have already raised more than $100,000 helping to prove that you can have loads of dirty fun and feel good about it in the morning.
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ways to give
Give at the office Every year, people nationwide help create a world free of multiple sclerosis by contributing through their employer’s charitable giving campaign. Most campaigns kick off in the fall, so if you’ve been looking for an easy and efficient way to join the movement, act now. Simply designate your annual pledge to the National MS Society. Your donation will be automatically deducted from each paycheck to fund cutting-edge research and provide programs and services to help people affected by MS move their lives forward.
3 personnel are eligible to participate in the Combined Federal Campaign (CFC), the nation’s largest workplace giving program. If you participate in the CFC, designate your gift to the Society using CFC#11409. If your company offers a workplace giving program, look for the Society listed under Community Health Charities. If your employer doesn’t offer a giving program, talk to your benefits administrator or call us at 1-800-344-4867, option #2, to see if we can help.
Federal government employees and military
National Multiple Sclerosis Society Michigan Chapter 21311 Civic Center Drive Southfield, MI 48076 1-800-344-4867 Chairman: Michael Brady Chapter President: Elana Sullivan Editor: Sarah Borst Design: Graphinity, Inc. © 2013 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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Money Matters
Health Insurance Coming Soon – Very soon On October 1, 2013 health insurance enrollment begins in the insurance Marketplace (sometimes called Exchange). The Marketplace will give Michigan adults access to individual health insurance. Go to healthcare.gov to get information about the Marketplace and benefits available. This easy to use and understand website answers many health insurance related questions. After October 1, 2013 the website will show you the choices you have for individual insurance coverage, the premiums, deductibles and copays for each plan and much more. You will also be able to complete an insurance application online with no obligation to buy.
Key Facts: • If you have job-based health insurance you like, you can keep it. You may be able to change to Marketplace coverage if you want or if you find that Marketplace coverage gives you more desirable features. • Starting in 2014, health insurance plans can’t refuse to cover you or charge you more just because you have a pre-existing health condition.
• Medicare is not part of the Marketplace and benefits are not changing. Beneficiaries (either people age 65 or older or being eligible because of disability) do not need to sign up in the Marketplace. • All plans described will be in day to day language. They will be in a format that makes it easy to compare plans. • Premiums for health insurance bought through the Marketplace will vary by age. • Purchasing individual insurance via the Marketplace may make it possible for you to get lower cost on your premiums depending on your income and family size. • A Kaiser Family Foundation subsidy calculator illustrating premiums and tax credits for people in different circumstances is available at healthreform.kff.org/ subsidycalculator.aspx. Healthcare.gov includes a live chat option to answer your personal questions. Call 1-800-318-2596 if you need assistance via phone.
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Celebrating 25 Years of Dedication “No one cares how much you know, until they know how much you care.” Rose Jones Taylor is celebrating her 25th year at the National MS Society, Michigan Chapter. In 1987, Taylor picked up the Yellow Pages and called the office interested in any open positions. The National Multiple Scerosis Society really appealed to her interests for a career in human services. When Rose first started, she was the Information and Referral Specialist and completely fell in love with the organization. Since then, she advanced to the position of Vice President of Programs. Since Taylor began her career with the Society, she’s had a major influence on programs and services that the Michigan Chapter offers. Some of those include the Ask the Nurse Program, Friendly Listening, the MS Achievement Center and more. “I have served on all kinds of local coalitions and national task forces on behalf of the chapter. I have also had the honor of acting as a consultant to other Society Chapter Programs staff for years,” said Taylor.
5 Taylor has also won a number of awards. One award that she is particularly proud of is the National MS Society Cavallo Award in 2008. The Cavallo Award is still so meaningful because it was earned during a very tough economic time for the chapter. The Chapter had to be creative in offering programs and services, so the clients didn’t feel the impact of the other major cuts made at the office. In addition to Taylor’s involvement with groups, she really enjoys working with volunteers. Pat Morgan and Ron Herman are two names that come to Taylor’s mind when she thinks of amazing, dynamic people who volunteered for years for the chapter. “Sadly, both are deceased, but they continue to motivate and inspire me to keep doing what I do.” said Taylor. During her career, Taylor also had the opportunity to meet Sylvia Lawry, the founder of the National Multiple Scerosis Society, as well as other great leaders and researchers in the fight against MS. She is very excited about recent advances in MS research. “I want to see a cure and I truly believe it’s not that far away,” said Taylor. Over the last 25 years, Taylor’s commitment to the cause and her work ethic have made a positive impact on people with MS. She is definitely serving the people and doing a wonderful job. “It’s been fun, it’s been challenging, and it has always been rewarding,” said Taylor.
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Focus on MS research
A joint meeting held May 29 to June 1 by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research. Here is a selection from more than 200 presentations on research seeking to stop MS in its tracks, restore function to those who have MS and to end the disease forever.
Stop MS Researchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans were significantly reduced. However, there was
MS connection: Fall 2013
significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits for people with MS of this experimental procedure. A study at the University of California, Los Angeles, tested whether male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women.
Restore: Rehabilitation Three separate studies reported results on falling issues. • Debra Frankel, Vice President, Programs, Services and Clinical Care at the Society, reported that participants in the Society’s Free from Falls program improved in balance and walking, and that the psychological impact of falls was reduced, even six months after the program. (For more on how to participate in the Free from Falls program, call 1-800-344-4867, or visit nationalMSsociety.org/freefromfalls.)
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• At the University of Illinois at UrbanaChampaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management. A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety.
Restore: Repair Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.
End MS A Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Hispanic/ Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanic/ Latinos living with MS, visit mueveteMS.org. A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. To read more about the joint meeting and other recent MS research, visit nationalMSsociety.org/research or sign up at nationalMSsociety.org/signup to have MS eNEWS delivered monthly to your inbox.
8 Programs and Services
Program Announcements What You Need to Know: MS Research and Advocacy will be held in Port Huron on Saturday, November 9. This program will feature John Kamholz, M.D., Ph.D. on “Stem Cell Research for MS and MS Research Update” and Deepa Nandamudi, LMSW on “How to Be Your Own Best Advocate.” Register at nationalMSsociety.org/mig or call 800-344-4867. Coping with Caregiver Stress and Burnout will take place on Friday, November 22, in Shelby Township. This valuable program will feature information on ways caregivers can recharge and find balance, as well as provide an opportunity to connect with other caregivers. Register at nationalMSsociety.org/mig or call 800-344-4867. Midwest Teleconference Series Be on the lookout for the new Midwest Teleconference Series (MTS) brochure. It will be mailed soon and will include teleconference dates and topics from October 2013 – March 2014. Get ready to be one of the first to sign up for this popular program. MTS takes place on the second Monday of every month at 8:00pm. Upcoming topics include “Impacts of the Affordable Care Act,” “Stress and MS,” “Men’s Sexual Issues,” and more. North American Education Program The topic for the 2013 North American Education Program (NAEP) is Making
MS connection: Fall 2013
Treatment & Lifestyle Decisions: Thinking Clearly About Benefits and Risks. This program will highlight the significant progress made in developing new treatments and focus on how people with MS evaluate benefits and risks when making treatment and lifestyle decisions. This program will feature healthcare professionals from the Mellen Center and the Montreal Neurological Institute and Hospital. Self-Help groups statewide will receive this program as a DVD and booklet to provide to participants in an upcoming meeting. You may contact the Information Resource Center at 800-344-4867 option #1 to find a selfhelp group near you and to contact the leader on when the NAEP will be offered at an upcoming meeting. The first group that will be offering the program is listed below. Saturday, November 9 Gratiot County Self-Help Group Alma Public Library 10:30am Contact: Dan and Jennifer Digmann 989-775-8475 if you plan to attend.
Financial Assistance Program The financial assistance program is a helping hand to people living with multiple sclerosis who have a financial need. This program offers assistance in a wide variety of areas including, but not limited to: assistive technology, auto modifications, grab bars and other safety rails, incontinence supplies, medical equipment,
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short term rehabilitation therapy, counseling, short term home care, medical transportation, and limited assistance for past due utilities and rent/mortgage. If you have a financial need and would like information on qualifications, please call 1-800-FIGHT- MS (1-800-344-4867), option 1, for more details and to request an application. If you have received assistance in the past, you will need to submit a new application. Our website has details on the financial assistance program at nationalMSsociety.org/mig.
2014 Scholarship Program MS shouldn’t stand in the way of an education. This is why the National MS Society’s scholarship program exists — to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The Society established its scholarship program in 2003 and the program continues to grow both in terms of support and scholarships awarded. In its first year of operation the program awarded 36 scholarships for a total of $68,000; in 2013 over $1 million was awarded. Three recipients were from Michigan. The e-application will be “live” on the national site on October 1. For more information please visit our national web page at nationalMSsociety.org/scholarship or call 1-800-344-4867.
Announcing New Self Help Groups: Holland Self-Help Group Dewitt Professional Building Zeeland Hospital 8333 Felch Street, Zeeland, MI 49464 Group meets the first Wednesday of the month from 7:00-9:00pm Please contact Maureen Dunn at 616-395-7695 for more information. Macomb County Men’s Group Utica United Methodist Church 8650 Canal Road Sterling Heights, MI 48314 Tuesday, September 24, 7:00-9:00pm Meetings are held four times per year. Please contact Mark Maciejewski at 248-620-1998 for more information. Downriver Self Help Group Southgate Veterans Memorial Library 14680 Dix Toledo Road Southgate, MI 48195 Beginning in September, meetings will be held the first Tuesday of the month from 1:00-2:30pm and the third Thursday of the month from 6:00-7:30pm. Please contact Cindy McGrath at 734-284-2228 or Stephanie Junior at 313-550-2080 for more information.
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1400 Mile Ride to Get Closer to Cure for MS (Continued from page 1) upon his return as he passed through Mt. Clemens. The local cable TV station for Warren did an interview before he left on his trek and welcomed him back on August 13, 2013 when he returned. Barnett’s two daughters, Karen and Lisa, and his wife Liz, supported him during the planning and the execution of the trip. Karen Waskin and Lisa Lebel developed and updated a website at: TomsBicycleTourOfMichiganForMS.com with Barnett’s daily progress during the trip. The two girls developed clothing with logos for the project which were sold with a portion donated to the National MS Society. Photos were uploaded as Barnett found access to send them to his two daughters. His wife Liz took on the major task of keeping everything running smooth at home and encouraging him when they talked at the end of each day’s ride. There were many highs and lows during this trip on a U.S.A. made bicycle from R & E Cycle in Seattle, Washington. The long days of solo riding were particularly difficult at times mentally. The camping and sleeping on the ground were certainly not as comfortable as sleeping in his own bed. The scorching heat the first two weeks of July, followed by unseasonably cold temperatures at night for the last half of July and first two weeks of August, were a test of endurance and determination.
Tom’s glamorous accommodations Additional clothing had to be purchased as plans did not include riding in high 40 degree temperatures near Elk Rapids along with high winds. The roads were not always friendly for a single bicycle on the Lake Michigan coast along US 31, but changed to pleasant friendly wide shoulders all along the Lake Huron coast. Barnett visited cities, towns and villages that he had never been in before and found people to be very friendly and eager to help him find places to eat and set up camp or locate a motel for the night. That was one of the pleasant surprises. The people he met either knew someone living with MS or had someone in their immediate family living with MS. “I wasn’t prepared for that. I talked with anyone who would listen about multiple sclerosis and the reasons I was riding for MS donations,” said Barnett. “It inspired people to go to my website where they found a link to my page for Bike MS on the National MS Society website. It also inspired cash donations. I was sitting in a
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diner in Elk Rapids trying to warm up from the wind and high 40 degree temps I had just rode in, when a group of people came in on motorcycles. They were all dressed in leathers and warm clothing and mused at my shorts and short sleeve top and light jacket. They handed me cash for MS they collected among themselves as they left the diner with a caution to keep the rubber side down on the pavement. Wow! I met a couple from Canada sitting on a picnic table in Pinconning at the Cheese Store. We ate our lunch and talked. They ended up inviting me to dinner when I reached their campground 26 miles away, east of Bay City. I ended up staying the night in their camper when it started raining again in the evening.”
11 Many people along the journey exhibited this type of friendly gesture toward Tom as he rode and discussed MS and his reasons for doing such an extraordinary project at his age. “This was a six-week challenge for me and I get to return to my life and enjoy the memories and resume normalcy. Those living with MS don’t have that option. They have varying degrees of challenges every single day, 365 days a year, year after year,” Barnett said. His challenge for six weeks is not even close to what his friends go through on a daily basis with their MS. Tom hopes to plan another bicycle tour, maybe next year, if his health continues to allow him to do so.
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Fundraising
BE INSPIRED. GET CONNECTED. WALK MS. 2013
Walk MS — connecting people living with MS and those who care about them. It is a day we come together to show the power of our connections.
Find a Walk and start fundraising today because the money we raise at Walk MS speeds new treatments for people with MS, ensures financial support for people dealing with the havoc MS causes, and supports local programs.
Choose your 2014 Walk Bloomfield: May 3 (Tentative) Detroit: To Be Determined Dexter: June 21 (Tentative) Frankenmuth: May 10 Grand Haven: September 6 (Tentative) Grand Rapids: May 17 Kalamazoo: May 3 Lansing: April 26 (Tentative) Marquette: September 13 (Tentative) Midland: April 26 (Tentative) Milford: September 7 (Tentative) St. Clair: May 10 Traverse City: June 21 (Tentative) West Branch: September 14 (Tentative) Wyandotte: May 17
Bike MS is the nation’s premier fundraising cycling series. Whether you’re a hardcore rider, looking for fun, setting Great Lakes Breakaway a personal goal, or have a connection to Ride 2013 someone living with MS – the Great Lakes Breakaway rides are exactly what you are looking for. Be a part of Bike MS and get ready for the ride of your life. Whether you’re new to Bike MS or ride every year, we will raise money, have fun, and make a difference in the lives of the 18,000 people living with MS in Michigan. The Michigan Chapter offers four bike rides, each offering a combination of beautiful scenery, outstanding people, and of course, a great cause. Whichever ride you choose, it will be the most rewarding journey you’ll ever make.
Choose Your 2014 Ride West Michigan: Holland, MI June 7-8, 2014 Mid Michigan: Linden, MI July 12-13, 2014 Fall Breakaway: Brighton, MI September 20, 2014 Bavarian Breakaway: Frankenmuth, MI September 27-28, 2014
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Marathon Strides for Multiple Sclerosis The 2013 Detroit Free Press/ Talmer Bank Marathon is coming up on October 20 and the thirsty runners are going to need our team of hydration assistants once more! As a charity partner with the marathon, the National Multiple Sclerosis Society Michigan Chapter, runs a fluid station on the course. We are set up around the 9 mile mark just as runners come over the Ambassador Bridge to make sure that there is enough water and Gatorade and screaming to go around. We could use several more hands to help out as we see over 30,000 participants zipping past. If you like a fast paced and fun event, this one is for you. To volunteer, please contact Christopher Rowe at 248-936-0362 or by email at Christopher.Rowe@nmss.org. He will need a photo ID (a cell phone picture of your face would work just fine) to send in for your credentials. The marathon website can be found here: freepmarathon.com
Realm of Darkness Multiple Sclerosis Awareness Night at one of America’s Top Haunted Attractions – Saturday, October 5, 2013 The Realm of Darkness challenges you to raise awareness of multiple sclerosis and test your bravery as you spend the night in one of America’s top haunted attractions. For those brave enough to make it through until morning, there will be a continental breakfast for the survivors. If you feel you can conquer your fear and want to be part of a great cause to raise money and awareness for the Michigan Chapter of the National MS Society, please call 248-338-0400 for sign-up information and additional details. Interested in hosting your own DIY event, please contact Tammy Willis at Tammy.Willis@nmss.org or at 517-646-0807. The Realm of Darkness 37 Turk Pontiac, MI 48341 therealmofdarkness.com
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MICHIGAN CHAPTER EMPLOYEE SPOTLIGHT Judy Fannon My name is Judy Fannon and I am the Staff Accountant for the National Multiple Sclerosis Society, Michigan Chapter. I handle daily processing of all revenue and expense transactions, administer financial statements and report the information to management as well as other projects. Accounting functions are needed by all industries, however working for the National MS Society has a special meaning for me. I was first introduced to the devastating effects
of MS when my older sister was diagnosed with this disease. I began participating in the Walk MS events in the area to help raise funds and awareness to the people closest to me. It was a bigger shock to me when I too was diagnosed with this unpredictable disease. A couple years ago I had the opportunity to volunteer with the Society directly for six months. While doing this I let them know that if a position ever opened up to keep me in mind. Luckily when a position did, they called me! I feel fortunate to have the privilege to work with such a fabulous group of people that are so passionate at what they do. The progress that the National MS Society has made in these last few years at finding a cure for this debilitating disease is astounding. The possibility of a cure and restoring mobility is imminent and being a part of this is wonderful! Please feel free to contact me anytime at Judy.Fannon@nmss.org or 248-936-0352.
OUR VISION: A world free of multiple sclerosis OUR RESEARCH FUNDRAISING GOAL: We will raise $250 million for MS research by the end of 2015
HOW WE WILL ACHIEVE OUR GOAL: • Pursuing all promissing avenues • Expanding the quantity and quality of MS research worldwide • Connecting people, resources and ideas • Speeding development of new treatments • Proven track record of results with significant impact on people’s lives
OUR RESEARCH GOAL: We are a driving force of MS research and treatment to: STOP: We must stop all disease activity and prevent further progression for people already living with MS RESTORE: We must restore all function that has already been lost to nervous system damage from MS END: We must work to completely eradicate MS and prevent it from ever occurring in the future
NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.
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21311 Civic Center Dr. Southfield, MI 48076
Join the Movement! Make your 2013 year-end gift today and help 18,000 people in Michigan living with Multiple Sclerosis. Yes! I want to help people living with MS by contributing: n $25
n $50
n $100
n $250
n $500
n Other:____________
Please make your check payable to the National MS Society and mail with this form to: National MS Society, 21311 Civic Center Drive, Southfield, MI 48076 or call 248-936-0347 or log on to nationalMSsociety.org/mig and click “Donate.” Thank you for making a difference in someone’s life today.