DELAWARE CHAPTER
MSCONNECTION MOVING TOWARD A WORLD FREE OF MS
SUMMER 2012
Turning delaware orange During MS Awareness Week, March 12-18, people all
over Delaware and the country came together to make connections and spread the word about MS and the need to find a cure. Multiple sclerosis destroys connections and divides minds from bodies. Therefore, it’s only fitting that connections can help in the fight against MS. As more connections are formed, more knowledge is shared, more questions asked, more resources gathered, and more hope is provided to help people with MS move their lives forward. Whether you tied an orange ribbon in the community, hosted a fundraiser, or attended an event, these small actions made connections that will someday soon More information about the new national add up to a big awareness campaign on pg. 2 defeat of MS.
INSIDE THIS ISSUE:
Photos: Cab Calloway students“flash mob” the Wilmington Train Station (top). MS advocates with Reps. Jaques and Williams for a proclaimation signing (above). MS activists at the Market Street movement event (right).
Page 2-3 Awareness
Page 4 Chapter News
Page 5 Gardening
Page 10 DIY Events
National Multiple Sclerosis Society Delaware Chapter
Making the connection This spring, the National MS Society launched a new campaign: MS Kills Connection, Connection Kills MS (example seen below). While this is a fairly in your face style of Kate Cowperthwait communication, when you think about the message President it is accurate. It helps to demonstrate the stark realities of this disease. Physically, the disease kills connection; to the brain, to the body, to the outside world. Conversely, connection kills MS; when we connect together we have more power to push back, to fight MS, and to find the cure. When we make the connection with each other we are stronger, more united. Isolated and alone we retreat against MS, and MS wins. Along with this campaign, a new website was launched to help you make meaningful connections – when, where and how you
want. At MSconnection.org, you will have easy access to the best content and resources in the MS community. You will also be able to connect with others living with MS. Who knows? Maybe these connections will help you overcome an emotional or physical struggle, raise money for your team, or even discover a new treatment option. Just like our logo strikes out MS, this campaign signals that we are National no longer the quiet organization, standing on Multiple Sclerosis Society Delaware Chapter the sidelines. We are taking a stand. If you would like an MS logo car magnet, email me at kate.cowperthwait@nmss.org and I’ll send you one. You can tell the world that you too are taking a stand against MS and you too are willing to strike out MS. It would be a beautiful world without this disease, wouldn’t it?
Kate
A father in Minnesota shares how he’s feeling.
It stops a woman in Oregon, who’s lost her job and her boyfriend, from wanting to give up.
2 JOIN THE MOVEMENT www.MSdelaware.org
MS Awareness Week Recap For more photos, videos, and stories visit msdelaware.org • Monday, March 12th, volunteers in Wilmington kicked off MS Awareness Week by participating in public movement events to symbolize that MS stops people from moving (pictured on cover). Wednesday, March 14th, members of the • Government Relations Committee organized two proclamation signings at Legislative Hall one in the House of Representatives (organized by Reps. Jaques and Williams) and one with Governor Jack Markell. • All week, MS Ambassadors placed orange ribbons throughout the community, wore orange, changed their social media photos to our logo - even Governor Jack Markell wore orange! (pictured right) • Three open houses were held in Newark, Dover, and Georgetown, Walk MS teams hosted fundraisers throughout the state, the Community Services Parking Garage building and the Grand Opera House changed their exterior lights to orange. • Ernest and Scott Taproom hosted a “Fill the Need” happy hour in which attendees donated health and wellness items for people living with MS in long-term care facilities. From these donations our chapter was able to provide over 30 gift bags to residents! A special thanks to A,B&C, P.J. Fitzpatrick INC, Comfort Keepers, Club Fitness Gym (pictured left for wearing orange during MS Awareness Week), and all of our other business partners and MS ambassadors for making the week a huge success.
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Chapter News Read all about it! Oh, the places you’ll go... Arthur Stapler Memorial Adventure Fund In February, a group of twelve members went to the Inn at Pocono Manor for a winter weekend getaway. The activities included a visit with the dog sled teams and a sleigh ride. The most important activity, however, was being away for the weekend and the camaraderie of fellow participants. The Adventure Fund is available to all of our members who want to experience a once in a lifetime adventure. For more information or to apply, visit our website at www.msdelaware.org or call the office at 302-6555610, or toll free at 1-800 FIGHT MS.
Rest and Relaxation During the month of April, the Delaware Chapter hosted three Mind, Body, Spirit Workshops - one in each county - for Delawareans living with MS. Attendees participated in stress reduction through self-hypnosis, art projects, meditation, and chair yoga. For photos, visit www. facebook.com/MSdelaware.
Public Policy Conference
The week before MS Awareness Week, Delaware Chapter staff and Government Relations Committee members attended the Public Policy Conference in Washington D.C. Meetings were held with key staff members of our federal legislators to talk about funding for MS research, and caregiver and respite care.
Volunteers wanted! Fall Caring Hands On May 19, 2012, teams of volunteers travelled to the homes of people living with MS to help them with chores and yard work as part of our Caring Hands Program. Projects included yard work, cleaning gutters, and decluttering. Volunteers are still needed for our Fall Caring Hands Day - date to be announced later this year. We could really use your help! Recruit friends and family and form your own team! Contact Ainsley Hertrich at (302) 655-5610 or 1-800-FIGHT-MS if you would like to volunteer for the Fall Caring Hands. 4 JOIN THE MOVEMENT www.MSdelaware.org
NEWLY DIAGNOSED
The
dirt on adaptive gardening
Gardening is one of the most popular hobbies in the United States, one that can benefit people both mentally and physically, as well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height—on a patio, balcony, railing, steps, cinder blocks, window ledge or tabletop you can roll up to.” Reiser points out that people need little more than a patch of ground to get started—and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out.
Get prepared
Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle filled with cool water. (Call 1-800-344-4867 for information about cooling resources or visit www.msassociation.org/programs/cooling.) Set a timer to remind you when to take a break. Ergonomic gardening tools, such as add-on handles for trowels or extendable hoes, can help make gardening tasks easier. Go to www. abledata.com and search for “garden tools” to get an idea of what’s available. Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library if they have any books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits—literally—of your labors!
TOLL-FREE NUMBER (800) 344-4867 5
MEMORIALS
Tributes & Memorials JanUARY 21, 2012 – March 31, 2012 In memory of ... Lorraine Martin Edward P. Welch Robert Kells Dolores Stewart Joseph F. Campbell, Sr Laura B. Anderson Mr. & Mrs. Robert Seeds The Delores Campbell Lunch Bunch Tom & Dianne Hayden Lynn Choma Daniel & Deborah Blahusch Naval Civilian Manager’s Association James & Christine Peters Donna Ries Fritz & Shirley Griesinger Mr. & Mrs. Richard Suchanec Brenda L. Markum 2 Mill Rd., Suite 106 Wilmington DE 19806 (302) 655-5610 www.MSdelaware.org (800) 344-4867 www.nationalMSsociety.org
Norfolk Naval Shipyard Superintendents Assoc. Tony & Ruth Masulaitis Gloria Cannon Mr. & Mrs. Walter H. Youngheim Federal Managers Association Ann G. Holland Christine Connell Clark Hoffman Mr. & Mrs. Thomas DiCola John & Maureen Lynch Gloria & Chuck Campbell Kelly Wellborn Liv Reichle Ronald Dotterer From: Hilary & Haley Ken & Marguerite Shaner Jack & Shirley McGinley William Haughey, Jr
Peterman Company Joan Wagner Paul & Joyce Galutia Robert & Pamela Fitzgerald Ann Bell Helene Blum Linda Brand Diann Brooks Betty Cullen Janet Elgin Pat Lehr Elaine Masterson Judi Scheely Becky Townsend Linda Wagman Naomia Wortman Timothy & Susan Tatge Mr. & Mrs. Edward Kickenweitz Maureen & Harry Cochrane Jim & Gale White
MSCONNECTION Summer 2012
The information provided by the Society is based on professional advice, published experience, and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The Society recommends that all questions and information Chapter officers be discussed with a personal physician and does not endorse products or Chair: Carl Hertrich services. Such names appear here solely because they are considered valuVice Chair & GRC Chair: Maria McCabe able information. The Society assumes no liability for the use or contents Governance Chair: Cheryl Heiks of any mentioned products or services. Audit & Vice Chair: Matt Lenzini Studies show that early and ongoing treatment with an FDA-approved Secretary: Bianca Fraser-Johnson therapy can reduce future disease activity and improve the quality of life Treasurer: Steve Kessler for many people with MS. The Society’s medical advisors recommend that President: Kate Cowperthwait Directors: Holly Maddams, m.p.a., c.f.r.e. people with MS talk with their healthcare professionals about using these medications and the effective strategies and treatments to manage sympHelen Serbu toms. Then, call the Society at (800) 344-4867. Or visit www.national Debra Veenema MSsociety.org. 6 JOIN THE MOVEMENT www.MSdelaware.org
Mark Your Calendars The 2012 Annual Meeting and Bernice Schacter Research Symposium will be held on Saturday, November 3, 2012 (location to be determined). The luncheon and awards ceremony will be followed by the research symposium including a keynote speech and an interactive panel discussion. Mark your calendars today!
RESEARCH
Free COUNSeling
Did You Know?
The Delaware Chapter offers up to four free counseling sessions to members, and their families, living with MS. Counselors are available in all three counties. For more information, call us at 302-655-5610 or 1-800-FIGHT MS. Or, you can email Carol Cave at carolyn.cave@nmss.org to arrange an appointment that is most convenient for you.
Financial Counseling
In February, Clarifi, a non-profit agency that helps to promote financial awareness, opened its first Delaware location in Wilmington. Adjacent to the Delaware Chapter’s building, the office will provide services to chapter clients including budgeting, credit, debt and housing counseling. For more information, contact Jill Dempsey at (215)563-5665 ext. 3308 or jdempsey@claifi.org.
Thank you Walkers!
Wilmington: OVER 1,100 walkers raised nearly $125,000! Historic Dover: Over 600 walkers raised nearly $45,000!
TOLL-FREE NUMBER (800) 344-4867 7
NEWS
BLOG OPENS DOORS FOR MS COMMUNITY
Society blogger Nicole Lemelle
Fatigue, isolation, doctor’s visits—and yes, sex with MS— are just a few of the topics covered in the Society’s new blog. Not much is off-limits to Society bloggers and commenters. Instead, people with MS and MS specialists dig into very personal issues— and universal ones. “In these cyber pages, we intend to open up the doors which have long been closed (by society, by our families and by many of us living with MS) to discussion,” wrote blogger Trevis Gleason on January 4. “To that end, I’d like to take this opportunity to ask you what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?” Join in the conversation at blog.nationalMSsociety.org.
MS Readathon
Elementary School, raising $800 by reading 117 books! To learn more about Readathon or to get your school signed up for next year, please contact Ainsley Hertrich at (302) 655-5610, 1-800-FIGHT MS or ainsley. hertrich@nmss.org.
Readathon student Maglee Nicole Barnes with Rocky BlueWinkle
Readathon is an educational and fundraising program created by the National Multiple Sclerosis Society to encourage reading, promote community involvement, raise disability awareness, and aid in the fight against MS. Children are asked to read books at their own reading level for one month and obtain pledges for each book that they read from family and friends.
Online Peer Support Do you currently volunteer with us in a peer support program, or would you like to learn how to do so? If yes, read on …
The Society’s Online Peer Connections program is currently seeking people with MS or family members of people with MS who are interested in becoming peer support volunteers. As a volunteer, your profile would be included in an online This year, ten schools database, searchable by participated in the MS demographics such as age or Readathon and raised mobility status. Once a person a combined total of with MS selects you as their over $26,500! The Top peer support person, you Fundraising School was would then arrange to speak Hanby Elementary School, one-on-one either via email or whose students raised almost telephone on an agreed-upon $3,300. Every year, the Top topic. All conversations are Fundraising Student is invited confidential. to throw out the first pitch Visit nationalMSsociety.org/ at the Blue Rocks game on onlinepeerconnections, or Father’s Day, and this year’s Top Fundraiser was Jackson contact Monica Aden at 1-303-698-6100, ext. 15169. Weyl of John R. Downes
8 JOIN THE MOVEMENT www.MSdelaware.org
RESEARCH
Survey says walking issues important to address
Susan Cohn-Child, diagnosed in 1995, walks with son Zach
Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.
Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury. While 65% of those surveyed reported walking difficulties or trouble with balance, 40% “rarely or never” discussed the issues with their doctor. “Clearly we need to encourage and empower people with MS to discuss walking impairment with their doctor, including newly diagnosed patients who may be experiencing only mild problems with walking or balance difficulties,” said Nicholas LaRocca, PhD, vice president for Health Care Delivery and Policy Research at the Society.
Results in for potential MS therapies • In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%— the average number of annual MS relapses. More than 1,400 people with relapsingremitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review. • A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of participants in each group who experienced events defined as treatment failure. Teriflunomide is thought to prevent damage to the nervous system by immune cells. A previous phase III trial was more successful and three others are ongoing. The FDA is reviewing an application for marketing approval of teriflunomide. To stay current on MS therapies in the pipeline for FDA approval, sign up for MS eNEWS at www.nationalMSsociety.org/signup. TOLL-FREE NUMBER (800) 344-4867 9
WAYS TO GIVE
Do It Yourself Fundraising gets boost
DIY MusicFest event, hosted by John Smith at AquaSol Restaurant in August 2011
A family in Florida who says they like to “eat, drink and throw a good party” hosts a casino night on behalf of the National MS Society. A fellow in Minnesota sponsors an annual fourday event for four-wheeling enthusiasts to ride on trails in the middle of the woods. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strongman competition, a bike ride in high heels and a tabletop decorating contest. A Wall Street–based poker tournament raised over $850,000, but a $200 bake sale is equally appreciated. Diverse as they are, these events are all Do It Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www.doityourselfms.org, which gives the same resources that are given to Bike MS and Walk MS participants. 10 JOIN THE MOVEMENT www.MSdelaware.org
These resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, where to hold it, publicity, finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more. People can find out what lessons others have learned and how to create a committee—a core group that will support the effort and whose talents can be utilized. (For example, a friend who’s a graphic designer can design the invitation.) The toolkit also includes flyers, badges and email signature images to download. “The online tools are very intuitive,” said Nuwash, so organizers can easily and quickly reach out to friends, family members and co-workers. “The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.” To host your own event, contact Holly Maddams at Holly.Maddams@nmss.org or call 302-655-5610. Café con Leche Invitamos a las personas hispanas/latinas con esclerosis múltiple a participar una vez al mes en un grupo telefónico gratis totalmente en español. Para más información o para inscribirse llame al 1-800-344-4867, opción 3. (Hispanic / Latino people with MS can participate by phone in a free monthly Spanish-language support group. For more information, call 1-800-3444867 and press 3.)
ADVOCACY
Keeping up with health reform by Kimberly Calder
With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Societyvetted sources for reliable and up-to-date information about the impact of the ACA in our area. The National Conference of State Legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. The National Academy for State Health Policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and informationsharing between policymakers, activists and others working on health reform implementation. The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The
Healthcare Law and You,” then “Implementation Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit www. MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy.
MS Activists help add MS to Compassionate Allowances list Thanks to hard work by Society activists, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly. TOLL-FREE NUMBER (800) 344-4867 11
National Multiple Sclerosis Society DelawareChapter Chapter Delaware
Two Mill Road, Suite 106 Wilmington, DE 19806
Connect with us online:
www.MSDelaware.org facebook.com/MSDelaware @MSSocietyDE
Don’t just ride, Bike MS. Conquer the course /// Bike MS: Bike to the Bay /// September 22nd and 23rd /// 2 days /// 150 miles /// 17, 45, 75, 100, 150 route options Register today /// biketothebay.org or call (302) 655-5610 or 1-800-FIGHT-MS
Free mailing for blind and handicapped
National Multiple Sclerosis Society DelawareChapter Chapter Delaware
Two Mill Road, Suite 106 Wilmington, DE 19806
Connect with us online:
www.MSDelaware.org facebook.com/MSDelaware @MSSocietyDE
Don’t just ride, Bike MS. Conquer the course /// Bike MS: Bike to the Bay /// September 22nd and 23rd /// 2 days /// 150 miles /// 17, 45, 75, 100, 150 route options Register today /// biketothebay.org or call (302) 655-5610 or 1-800-FIGHT-MS
Non-Profit Organization U.S. Postage PAID Permit # 246 Wilmington, DE