MSCONNECTION MOVING TOWARD A WORLD FREE OF MS
a Shared Commitment to Finding a Cure Secre ts of Walk MS Fundr aising Star K ay Oesterling
Walk MS participants are an inspiration to those living with MS. Most are there to support a family member or a friend, but everyone is there to support the effort to find a cure. We caught up with Kay Oesterling, reigning Walk MS: Baywood Greens top fundraiser for nearly 8 years, to discuss why she participates in Walk MS and how she is able to raise remarkable sums year after year, in spite of other obligations and even MS itself.
“I’m not doing this just because I have MS, but for everyone who lives with MS,” said Kay. As her MS continues to progress, muscle weakness, balance and vision issues, and fatigue make some daily tasks challenging for her. “I think everyone who deals with this unpredictable and debilitating disease learns to adapt and adjust their lifestyle. I used to be a fast typist, but since the progression of MS, my left hand can’t keep up with my right hand,” she shared.
INSIDE THIS ISSUE:
Kay’s journey with MS treatments has been, Pictured left: at times, a rocky road. After several severe Kay Oesterling reactions to disease modifying therapies, she and Team Zoom now relies on symptom management such as Zooms Captain physical therapy, massage therapy, exercise, Monroe Colvett meditation and diet to help manage her MS. She cut the ribbon noted that some days are better than others, at Walk MS: Baywood Greens but it’s clear that her faith, her strong spirit and positive attitude help her to persevere. last year. Why Kay Walks… In so many ways, Kay found a home as one of the Sussex Shore support Continued on page 4
Walk MS Page 4-5
Tax Tips Page 7
Research Page 8
Advocacy Page 10
National MultipleSclerosis Society Delaware Chapter
MSCONNECTION Spring 2012 2 Mill Rd., Suite 106 Wilmington DE 19806 (302) 655-5610 www.MSdelaware.org (800) 344-4867 www.nationalMSsociety.org Chapter officers Chair: Carl Hertrich, Drexel University Vice Chair: Maria McCabe Governance Chair: C heryl Heiks Audit and Vice Chair: Matt Lenzini Secretary: Bianca Fraser-Johnson Treasurer: Steve Kessler President: Kate Cowperthwait Directors: Holly Maddams, m.p.a., c.f.r.e. Helen Serbu Debra Veenema 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 be discussed with a personal physician and does not endorse products or services. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any mentioned products or services. Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve the quality of life for many people with MS. The Society’s medical advisors recommend that people with MS talk with their health-care professionals about using these medications and the effective strategies and treatments to manage symptoms. Then, call the Society at (800) 344-4867. Or visit www.nationalMSsociety.org. 2
President’s Impressions EVERY HOUR OF EVERY DAY, SOMEONE IS DIAGNOSED WITH MS. I can’t go anywhere without meeting someone who has been impacted by this disease. Whether it is personally, through a family member, or even a best friend - it seems like MS is Kate Cowperthwait Chapter President everywhere. And our Delaware statistics reflect this. There are 1,556 Delawareans with MS registered with our chapter – up from approximately 500 in 1990, when I started here. If you are reading this, you probably already know these facts. You have already likely given a donation, volunteered at Caring Hands, started a Walk MS team, or led a support group. Now think. Have you ever met someone who has never had personal experience with MS? Someone who is not familiar with the realities of the disease? Sure you have. To make continual progress in this movement, they are the ones that we need to reach. They are the ones who must hear your stories, your voice. Are we going to sit home and let MS keep us company? Do we want to be part of a silent group that just accepts this disease, as it marches through our community and our health?
Sign up to be an MS Ambassador by calling our office! (302) 655-5610 or 1 (800) FIGHT-MS
Or are we going to push back? Are we going to educate our neighbors, our fellow church members, our elected officials, or our co-workers? If not you, then who? This MS Awareness Week, March 12-18th, I suggest that you join us by becoming an MS Ambassador. What does an MS Ambassador do? Continued on next page
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Dine at one of the restaurants below and a portion of the proceeds will go to support various Walk MS teams.
March 14: 1 PM —3 PM Newark Senior Center 200 White Chapel Drive, Newark, DE March 14: 1PM —3 PM Georgetown Cheer Center 20520 Sandhill Road, Gerogetown, DE March 16: Noon — 2 PM First Baptist Church of Dover 301 Walker Road, Dover, DE
March 14: Buffalo Wild Wings - coupon needed* Dover Location - 680 Bay Rd. Bear Location- 1887 Pulaski Hwy. Newark Location -100 Elkton Rd. Wilmington Location - 2062 Limestone Rd.
March 15: Moe’s Southwest Grill Brandywine Town Center - Wilmington Governor’s Square 2 Shopping Center - Bear Shops at Sea Coast Shopping Center - Rehoboth March 15: California Pizza Kitchen Christiana Mall
*Additional events and details will be available as the dates get closer. To get the most up-to-date MS Awareness Week information, visit www.MSDelaware.org and watch your mailbox for a postcard! Also, visit msconnection.org to share your story and connect with people Living with MS throughout the country!
MSConnec tio n.org
I think accepting the diagnosis of MS is a big challenge, but it is not yours alone. There are 1,556 Delawareans with you, 350,000 nationwide, and we want to do something about this disease. Each of us can be a MS Ambassador during MS Awareness Week. If not you, then who?
O pen Ho u ses
These small actions may alone seem insignificant, but together act as a megaphone for our cause - amplifying this message outside of our core group and reaching those who do not know someone with MS. Or, that there is no cure. Yet.
Light lunch will be provided along with a brief program. Please invite family and friends. Drop-ins are welcome.
Write a letter to your legislator Reach out through your church Tie 10 orange ribbons around trees and sign posts in your neighborhood Donate your Facebook profile photo Register for a Walk MS event
TOLL-FREE NUMBER (800) 344-4867 | 3
MS Awareness Week
• • • • •
Continued from cover group leaders and as an
active member of Walk MS Team Zoom Zooms, captained by Jamie and Monroe Colvett.
Zoom Zooms. Last year she raised $6, 279! What are the secrets to her success?
Kay uses a personal touch to fundraise by writing letters. “I personally send out letters to all of the people who have supported me – “As a support group facilitator, the walk has a greater meaning to me because I am aware of the family,church people, friends, etc. Every year it’s different but every year devastating effects of it conveys the importance MS on people’s lives and of the walk and the impact of what the Delaware it can have on the lives of Chapter does for people those with MS. Like anyone who have MS and their Walk MS 2012 with MS, I know we need to families. Within our find a cure,” said Kay. own group there are Wilmington Riverfront Walk individuals who have Saturday, April 14, 2012 Much of the success is also benefitted by the MS 8:00 AM Registration; 9:00 AM Start a product of organized Society. ” Historic Dover Walk Team Captains Jamie and Saturday, April 21, 2012 Monroe Colvett, who set While Kay noted that AM Registration; 10:00 AM Start 9:00 fundraising goals for the she loves the beautiful team in advance. “It brings route along Baywood University of Delaware cohesiveness to our team,” Greens golf course, the Sunday, May 6, 2012 shared Kay. main draw is the fun and 9:00 AM Registration; 10:00 AM Start energizing spirit of the Afterwards, Kay goes the walk. Twilight at Heritage Shores extra mile by sending Friday, June 1, 2012 thank you letters to her “More than anything, 5:00 PM Registration; 6:00 PM Start supporters, telling them there is an atmosphere that the team met their that permeates the Twilight at Baywood Greens goal and reminding them entire group because Friday, June 1, 2012 that the monies raised go everyone who 5:00 PM Registration; 6:00 PM Start toward research, programs participates is there and services. She even because they are For more information or to register, photo copied last year’s committed to the same visit www.delawarewalk.org or Walk MS newsletter, which goal.” call (302) 655-5610 or announced her as the top Her most treasured Baywood Greens fundraiser, 1 (800) FIGHT-MS memory is walking with and included that. If, like her husband and friends. Kay, you would like to “The volunteers, the walkers, the whole ball of turn your passion for finding a cure for MS wax, it is very inspiring to those of us with MS. I into action, join us at a 2012 Walk MS site. If think ‘Wow you people would do this for us?” you want to start your own team, volunteer, or register as phantom walker call the office today! Fundraising: Team Zoom-Zooms This will be Kay’s 11th year walking with Team |
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Tracey and Dennis Seabolt, Annapolis, Md. Together they average $11,514 raised per year. “We walk for the vast network of friends and acquaintances living with MS we now have” since Tracey’s sister was diagnosed in 2000, Dennis said. They use every way they can to spread the word—happy hour fundraisers, Facebook, T-shirts. “Let people know what you’re doing and why you’re doing it,” Tracey said. Top tip: Don’t be afraid to ask! “I’ll go in a restaurant and ask them to sponsor an event. I walk in a dry cleaner or 7-Eleven and ask them to put up a poster,” said Dennis. “We raised $600 from a bowl where people left their change.”
Debbie Christensen, Edmond, Okla. Top fundraiser for the Oklahoma City Walk for the past 10 years, Debbie’s 79’ers, named for the year Debbie graduated from high school, garners between $8,500 and $14,000 a year. Debbie writes personal letters to some 300 people. “And if they don’t respond, I might send a second letter. I can’t hold a pen so my mother and mother-in-law do a lot of my writing. My church donates the postage.” Top tip: Include a self-addressed stamped envelope to make it easy for people to send back a check. “It makes all the difference.” NORTHEAST
SOUTHEAST Anthony Poggioli, Apex, N.C.
Karen Waldron, Albany, N.Y.
$26,235 raised in 2010
Raised $17,000 in 2010
Anthony is captain of Chrissy’s Crew, named for his wife. He’s in sales and marketing, and says about his regular letters and updates, “There’s a way of asking without asking. It’s not being sneaky, but to create excitement and energy. You don’t want to guilt people, but you do want to strike a chord.” Top tip: Keep it simple. “I’m not a big believer in doing multiple events—people have limited time and money. The goal is obviously dollars, but the Walk is also a day of hope and celebration.”
Karen and her team Waldron’s Walkers have participated in Walk MS every year since her diagnosis in 1997. Her favorite part of the whole event is a fundraising luncheon, that her mother, Sylvia D’Aprile, hosts at a local steakhouse. “The luncheon is a celebration of the Walk,” Karen said. The restaurant donates the food and the staff donates their time. “We frequent that restaurant, and a cousin is an assistant manager.” Each year the luncheon has increased in size and funds raised. Top tip: Try asking a restaurant or other place where you already have a relationship to host a fundraiser to raise awareness of the Walk. TOLL-FREE NUMBER (800) 344-4867 | 5
Secrets of Walk MS fundraising stars
Living with MS
Preparing for pregnancy Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make MS symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says Dr. Green. LEARN MORE: Julie Hammond, diagnosed with MS in 2002, with son Travis. Courtesy of Greater New England Chapter.
The good news about planning a pregnancy when you have MS is that there’s no evidence that MS has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm. Nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of MS, says Barbara Green, MD, director of the West County MS Center, St. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.” Meds, pregnancy and MS None of the disease-modifying drugs (DMDs) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “The risk time is when you’re attempting to conceive,” noted Dr. Green. Plan a discussion with your neurologist about when to stop DMDs—and when, after delivery, to begin them again. 6
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Check out the Society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies. Visit www.nationalMSsociety.org/ pregnancy, and find a full list of videos, web resources and more!
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.
Join the Movement®
Many of the expenses associated with managing MS might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities: • Equipment and extras, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive. • Home modifications that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that these changes don’t make your home more valuable,” suggests Anne Davis, program director of Legal Services for the Society’s New York City and Southern New York Chapter. For people receiving SSI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits.
Highlights for Persons with Disabilities (www.irs.gov/pub/irs-pdf/p907.pdf) and 502, Medical and Dental Expenses (www. irs.gov/pub/irs-pdf/p502.pdf)—may be helpful. Consult an accountant to make sure your particular situation is in line with current IRS regulations.
Tax deductions beyond medicine
The 2011 Delaware tax return will again include an option to donate to the Delaware Chapter. Thanks to the success of this new option, we received over $6,000 from Delaware tax-payers in 2011! To make your mark in 2012, see DE Schedule III Contributrion to Special Funds and write in your gift to the MS Society!
Two IRS Publications—907, Tax
Caring Hands May 19th Teams of volunteers will travel to homes throughout Delaware to assist those who are living with MS. Typically, volunteers help with chores such as house cleaning, organizing closets or garage, raking leaves, cleaning gutters, and small home repairs. Get involved by calling (302) 655-5610 or 1-800-FIGHT-MS. Want a team to come to your home? Ask for Carol. Want to volunteer? Ask for Ainsley. TOLL-FREE NUMBER (800) 344-4867 | 7
52 MS genes identified
In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease. Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.) The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover what causes MS and improve treatments. The Society is funding a second large study to confirm and expand these results. 8
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New MS therapy moves forward The first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting MS found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. The study, called CARE-MS I, involved 581 people with relapsing-remitting MS. Another trial, called CARE-MS II, is still underway. Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for MS in the U.S. in early 2012. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted.
MS Pro-Am Golf Tournament
Featuring the Delaware Park $2 Million Shoot-out
White Clay Creek Country Club For more details contact Holly Maddams at (302) 655-5610 or firstname.lastname@example.org
by performing weight-bearing activities. For more ideas on promoting bone health, go to www.nationalMSsociety.org and search for “You Can Build Healthier Bones.”
MS research TAKES center stage
People with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed. According to the study, low bone mass is more widespread among people newly diagnosed with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159 people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of controls.
In October, About.com blogger Dr. Julie Stachowiak and producer/director Kate Milliken—both of whom live with MS— reported live from the world’s largest MS conference at the Society’s blog.
At the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS), over 5,000 of the world’s leading scientists and clinicians gathered October 19Previously, scientists had speculated that 22 in Amsterdam. Results from four phase III people with MS are at greater risk of low bone density and broken bones due to factors studies on MS therapies were presented, along with the latest research on MS risk factors, such as lack of exercise stemming from treatments and diagnosis. mobility issues, medications or low levels of vitamin D (which plays a significant role in Join the conversation at blog.national building bone). The researchers suggested MSsociety.org, and connect with people with that even early in MS, people should pay MS, the people who care about them and MS attention to good bone health by getting experts. adequate vitamin D and calcium, as well as Does our quarterly newsletter address issues that are important to you? Let us know your feedback and input by emailing Stephanie.Fitzpatrick@nmss.org or calling the office at (302) 655-5610 or 1-800-FIGHT-MS. TOLL-FREE NUMBER (800) 344-4867 | 9
Bone health may begin early
bik e ms :
cr a n ki n ’ for a cure
June 3, 2012 Bunker Hill Elementary School, Middletown, DE Registration opens at 7:00 AM Ride begins at 8:00 AM. Bike to the Bay Awards to Follow www.crankin4acure.org Cyclists from Team Cowbell enjoying the ride!
Time to dust off that bike seat and crank up your training for Bike to the Bay! Ride this 30-mile loop once, or twice for 60-miles. There are rest stops along the route and full support vehicles. A light lunch and beverages are provided at the conclusion of the ride. A special awards ceremony for our Bike to the Bay 2011 Top Fundraisers and Team Captains will also be held at the conclusion of the ride. If you individually raised $1,500 or more for Bike to the Bay 2011 or you’re a team captain whose team raised at least $5,000, you are eligible to receive a commemorative jersey. All jerseys that are not picked up at Crankin’ for a Cure, can be picked up at our office at Two Mill Road, Suite 106, Wilmington, DE 19806. Save money by pre-registering at www. Crankin4aCure.org or call 302-655-5610 or 1-800-FIGHT-MS.
U n iv e r sa l Design MS advocates went to Dover to meet with legislators about House Bill 227, regarding increased usage of Universal Design Standards, the idea that buildings should be designed and built to be accessible to the elderly and disabled.
Facts about House Bill 227: • Provides opportunity for those with disabilities to remain in the community Rep. Stephanie Boulden meets with Nitin Rao, Maria McCabe, and • There is no mandate to include universal design standards, Darnell Trower of the but including these standards “may constitute a basis of Chapter’s Government best value” when evaluating bids during the selection Relations Committee process. • New code would only apply to new construction financed with government funds
House Bill 227 was voted out of the Housing & Community Affairs Committee and full House consideration is expected in March 2012. Visit www.msdelaware.org to read more. 10 JOIN THE MOVEMENT www.MSdelaware.org
October 1, 2011 â€“ January 20, 2012 In memory of... Horst Seidel Bruce & Joanne Walter Robert A. Smith Y.J. & M.M. Melanson
Arthur Stapler Brendan Walsh
Lorraine Martin Corporation Service Co Skadden, Arps, Slate, Meagher & Flom LLP Carol Greenway Anthony Clark
Billy Chandler Alice Stanfield
Mary E. Ball Kay VanSyckel Francis & Lorelei Olivieri
Barbara Mulrooney Susan & Fred Whitcraft Patterson Schwartz Foundation Inc George & Joanne Grubb Louis & Sally Bachman Joseph & Karen Spanelli Del Tech Community College English-Reading Dept. Harry Williams Ted Kempski James & Sue Ann Orga Bill & Pat Ferguson Richard & Virginia Brawders Christine & Mark Horwitz Beth & Craig Rotenberry Employees of DuPont Public Affairs Robert & Marilyn Smith
Mary Fite Anne Hickman
Charles L. Madden The Allen Family
Betty Lawson Allman Dan & Sheila Shotzberger Catherine Sullivan Phyllis & John Wilson Dr. John M. Stump Catherine & John Hughes Deborah & Richard Daisley Arnold Mattei, Sr Kaiserman Company, Inc Patricia Kitchen Muzik Kirk & Jen VanBlarcum Florence L. Wyre The Family of Allen & Cheryl Smith
Tributes & Memorials
TRIBUTES & MEMORIALS
Elizabeth Frost Ann Frost In honor of... Lillian Boys Jane Runkle Laurie Cowan on her 60th birthday Judi Feinson Mike Bailey Melinda Jones Ross & Jennifer Robb
Public Policy Conference March 5-7, 2012 MS activists from all over the country will converge on Capitol Hill in Washington D.C. to meet with federal legislators. Check out the next edition of MS Connection for details and photos!
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National MultipleSclerosis Society Delaware Chapter Delaware Chapter
Free mailing for blind and handicapped
Two Mill Road, Suite 106 Wilmington, DE 19806
Mark Your Calendars Spring 2012 Events
March 12-18: MS Awareness Week - SEE FULL ACTIVITIES LIST INSIDE! March 14: GRC Annual Advocacy Day at Legislative Hall, Dover April 13: New Castle County Mind, Body, Spirit Wellness Day April 14: Walk MS: Wilmington Riverfront April 21: Walk MS: Historic Dover April 20: Sussex County Mind, Body, Spirit Wellness Day April 27: Kent County Mind, Body, Spirit Wellness Day May 6: Walk MS: University of Delaware May 19: Caring Hands Service Day Connect June 1: Walk MS: Heritage Shores facebook.com/msdelaware Walk MS: Baywood Greens twitter.com/MSSocietyDE June 3: Bike MS: Crankinâ€™ for a Cure youtube.com/MSSocietyDE June 25: MS Pro-Am Golf Tournament MSdelaware.org