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DELAWARE CHAPTER

MSCONNECTION MOVING TOWARD A WORLD FREE OF MS

WINTER 2012

‘Tis the season to be thankful

Thank you for being a leader of the MS movement. Ever y action, ever y day, moves us closer to a world free of MS. Another year has passed in the blink of an eye. As we enter into this holiday season, the Delaware Chapter of the National Multiple Sclerosis Society would like to take a moment to recognize the generosity of friends like you, who have donated money and time to the cause. In 2011, it was a blessing to have the support of thousands of individual donors, grantors, and volunteers, all of whom share the same vision of creating a world free of MS. From these contributions, the chapter successfully maintained and grew a schedule of programs and services for the more than 1,550 Delawareans living with MS, and their families. In the past year, programs and services included free counseling, a caregiver essay contest, home modifications, financial assistance, scholarships, Adventure Fund trips and so much more! To give you an idea of just how impactful your donations were to the Delaware Chapter:

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Advocacy

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Annual Meeting 7

• If you gave $25 through Walk MS, you may have funded 10 round trips on a paratransit bus for a person with MS who is unable to drive. • If you raised $500 through Bike MS, you may have funded 3 days of respite care for someone who is the fullContinued on page 3 time caregiver for a loved one with MS. This year, among several other HomeAble projects, the Delaware Chapter was able to install a ceiling lift for Kelly Griffith, a client and Walk MS team captain. “It’s been a lifesaver, and it’s so much easier on me and the people who help me. What a wonderful gift,” shared Kelly, pictured left.

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Bike MS

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National MultipleSclerosis Society Delaware Chapter


PRESIDENT’S IMPRESSIONS

SEASON OF GIVING By now most of us have made our list, checked it twice and are getting ready for the upcoming holidays. But if you are still looking for that perfect gift, I have a Kate Cowperthwait great suggestion. Why Chapter President not make a gift to the Delaware Chapter in honor of a loved one? Why would anyone do that instead of a gift you might ask? Well, I’ll tell you why. Giving a gift in honor of someone is the type of gift that: • Won’t be returned for size, because one size fits all • You can give the same gift to everyone on your list • If your recipient receives more than one, it won’t be wasted

• It will be appreciated here at the chapter to help fund some of the more expensive Winter programs • The gift will be acknowledged publicly in the March newsletter and with a lovely “In Honor of” card to the honoree • You get a tax deduction (you won’t get that if you give a sweater) But most importantly, you will have the opportunity to personally impact the life of someone who is living with MS, and serve the greater good. Isn’t that what the season is all about? If you would like to take advantage of this very special gift, please go to our web site at www. msdelaware.org and click on the Donations tab on the left hand side of the Home Page. Be sure to indicate that this is a gift in honor of someone, and give us that person’s name and address. That’s one less item off of your “todo” list.

Kate

advocacy: Year in Review In 2011, the Government Relations Committee worked hard to raise awareness and make legislative progress by: • Lobbying for the passage of a bill that places a one year moratorium on insurance companies using specialty tiers for high priced medications so that a study can be conducted to determine the impact of this practice in Delaware • Attending Delaware Healthcare Commission and DHSS meetings to ensure that the new health insurance exchanges starting in 2012 will cover the needs of people with MS • Receiving an MS Awareness Week Proclamation on March 16th at Legislative Hall 2

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Director of Programs Debra Veenema and Board Member Bianca Fraser-Johnson present Rep. Earl Jaques Jr. with the Friends of the MS Society Award for his advocacy work.


Continued from cover • If you gave $1,000,

Above all, approximately 40% of each donation funded critical research projects at the national level into the cause of MS, development of new treatments, and ultimately, a cure (read the latest research updates on page 8 or at www. nmss.org). Additionally, in 2011 the Chapter expanded its grants program. A special thanks to returning grants from AstraZeneca, Bank of America, Boeing, Crystal Trust, Pot Nets Communities, Sussex County Council, and new grants from the Longwood Foundation, Biogen Idec, TD Bank and the Welfare Foundation.

As you make your holiday budgets, please consider, once again, giving to the Chapter. Your gift now will make a difference in someone’s world. You could change the life of someone like Kelly (cover) or even help to fund next year’s big research discovery. For more information, contact Dick Riggs, Major Gifts Officer, at (302) 655-5610 ext. 124 or at dick.riggs@nmss.org.

While there is plenty to celebrate at the

WANT TO GIVE AT THE OFFICE? Making a contribution through an employer’s charitable giving program is a convenient, easy way to help us move toward a world free of MS. These programs offer employees the opportunity to make an annual pledge to charity, choosing organizations from a list—and an automatic per paycheck deduction, or a one-time personal check. It’s a good time to ask about how to give at your own workplace. For public sector employees

Holiday Giving End of the year giving also provides donors with a way to offset taxes. The Delaware Chapter is available to work with you and your financial advisors at tax time to help detemine how a gift can impact your taxes.

CFC #11409

The nation’s largest workplace giving campaign is the Combined Federal Campaign (CFC). It is open to federal, military and postal employees. The National MS Society is in this pool. If you participate, use the code CFC #11409 to designate your donation to the Society. For private sector employees Last year, employees from such companies as United Health Group, American Express, Ameriprise and Toyota helped the Society with their strong participation in workplace giving campaigns. If your company participates, the National MS Society should be listed in your company’s campaign materials under the heading Community Health Charities. If not, ask your human resources department why! Visit www.healthcharities.org/Our-Charities for more information or call us at (302) 655-5610 to see if we can help. TOLL FREE NUMBER 1 800 344 4867

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END OF YEAR GIVING

you could have funded emergency mortgage assistance for a family in crisis.

Delaware Chapter, there is still so much progress to be made. Even in the midst of these tough economic times, the mission remains the same, and the number of Delawareans with MS continues to grow, with 1,550 known clients in Delaware.


LIVING WITH MS

CCSVI studies—oneyear update The first-year progress reports from seven Societyfunded studies of CCSVI, or chronic cerebrospinal venous insufficiency, were released July 14, 2011. The research teams report being on track in collecting objective and comprehensive data. The studies were launched with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society. The research teams have recruited a broad spectrum of people with and without MS. Already more than 486 people have been scanned using various imaging technologies. Only by refining imaging methods can investigators more reliably validate if a person actually has CCSVI and better understand its relationship to the MS disease process. The full results, to be released after completion, will help guide future steps, including the development of clinical trials to test whether treating CCSVI is safe and effective for people with MS. In the meantime, several of the teams will present preliminary results at medical meetings later this year. To read more about the studies and to get the news of results, visit www. nationalMSsociety.org/ccsvi.

Live Fully, Live Well the holistic approach to MS A new multimedia wellness program, a collaboration between the Society and Can Do MS, launched this June. Called Live Fully, Live Well, it is designed for people with MS and their support partners, and deals with a wide range of topics covering health, relationships and quality of life. Through December 2011, Live Fully, Live Well is offering in-person workshops, videos, and monthly webinars presented by physical and occupational therapists, MS nurse educators, dietitians and other MS experts. The June and July webinars are already archived on the National MS Society website and can be accessed at any time. All the subsequent webinars will be available on the Society’s website shortly after the program’s air date. For details and schedules from August on, log on to www.nationalMSsociety.org and search for “live fully live well.” To register for in-person workshops, call Can Do MS at 1-800-367-3101, or email info@mscando.org.

Up-to-date FAQs on the Affordable Care Act To help people with MS understand the Patient Protection and Affordable Care Act, or ACA, signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ACAFAQ. On this page, people can find answers to questions like: What if I am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Continued on next page

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at www.adata.org or call 1-800-949-4232 for information and training on how to implement the ADA in our area.

The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. In addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues.

2012 SCHOLARSHIP PROGRAM IS NOW OPEN!

As various provisions of the ACA kick in over the next few years, the Society will continue providing up-to-date information and links.

NEW ADA RULES More than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of people living with disabilities. The definition of “disability” had been selectively narrowed over the years. Now, the Equal Employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities, regardless if the disability is in remission. Multiple sclerosis will almost always meet the “disability” criteria because MS limits a major life activity (namely, neurological function). The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices, polling places and emergency preparedness centers.Learn more at www.ada. gov. Also visit the ADA National Network

SCHOLARSHIP

Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out?

2011 was a record year for the Society’s everexpanding scholarship program: over $1 million in new awards and renewals were granted to recipients. Locally, nine scholarships were Apply Now! given out due to MSDelaware.org the geneorsity of donors through Courtney Hahn, a 2011 the Stapler and scholarship recipient, Tunnell Funds. currently Scholarships attends the University were given to of students like Delaware. Courtney Hahn, She who attends the hopes to University of become an Delaware and optometrist, as it was an hopes to one day optometrist who helped to be a doctor. discover her father’s MS. Scholarships “It was an easy process and range from $1,000 to $3,000 the MS Society was very generous. The scholarship and typically helped me to be able to cover one year. further my education,” Applications said Courtney about the are evaluated MS Scholarship program. based on financial need, academic record, leadership and volunteer activities, a statement of educational and career goals, and letters of recommendation. Information about the 2012 MS Scholarship is now available on the National MS society website at www.nmss. org. TOLL FREE NUMBER 1 800 344 4867

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TRIBUTES & MEMORIALS

TRIBUTES & MEMORIALS July 1, 2011 – Sept. 30, 2011 In Memory Of... Professor Lorraine Harvilla

EVENTS CALENDAR SPRING 2012 Walk MS: Wilmington Riverfront Saturday, April 14, 2012

From: Barbara Puckett Anne Gordon Kessler From: The Class of ‘44 of Tredyffrin Eastown H.S. Mary S. Hinkle From: Betsy Gant Rebecca Wade Ruby Evans From: The Sanctuary Choir of Bethel A. M. E. Church William Stewart

Walk MS: Historic Dover Saturday, April 21, 2012 Walk MS: University of Delaware TBD Bike MS: Crankin’ for a Cure Sunday, May 20, 2012 Walk MS: Twilight at Baywood Greens Friday, June 1, 2012

From: Michael Yebba Betty Lawson Allman From: Lynn P. Wigton Catherine Sullivan

Walk MS: Twilight at Heritage Shores Friday, June 1, 2012 Register to walk at www.DelawareWalk.org or call 302-655-5610.

MSCONNECTION, WINTER 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: Cheryl Heiks Cozen O’Conner Audit chair: Matt Lenzini, Pepco Holdings Secretary: Bianca Fraser-Johnson, Bank of America Treasurer: Steve Kessler, Bank of America President: Kate Cowperthwait Directors: Holly Maddams, M.P.A., C.F.R.E. Helen Serbu Debra Veenema 6 |

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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 healthcare 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.


2011 Annual Conference & Bernice Schacter Research Symposium The Delaware Chapter’s 2011 Annual Conference and Bernice Schacter Research Symposium was held on Saturday, November 5th, at the John H. Ammon Medical Education Center on the campus of the Christiana Hospital. Over 100 Delaware Chapter supporters attended the conference. The event was generously sponsored by Biogen Idec and Genzyme. Dr. Elliott Frohman, MD, PhD, FAAN, the keynote speaker, provided a presentation with updates on novel therapeutic options for MS, including disease modification, symptom management, and new work focused on myelin repair. Attendees also participated in a panel discussion that included several MS specialists. About the Panel Dr. Frohman is the Director of MS Programs and the MS Clinical Center University of Texas Southwestern. Dr. Jason Silversteen worked under Dr. Frohman before coming to Delaware and joining Christiana Care Hospital. Dr. Scott Newsome and Maureen Mealy, RN, BSN, are both from John’s Hopkins. Dr. Newsome is Assistant Professor of Neurology at the MS Center and Maureen Mealy is the Program Manager at the Transverse Myelitis Center.

Awards An important part of the Annual Conference is the presentation of awards. This year awards were given out to the following dedicated supporters: Friends of the MS Society The Eagle Group Cathy, Dale and Scott Donaway Rep. Earl Jaques Jr. Matt Lenzini Sheila Morrow Joan Wheeler Corporation of the Year Total Bakery Source Communications Award Delaware State News The Norman Cohn Hope Award The Hope Award is the highest award given out by the National MS Society. This year’s recipient, Carl Hertrich, has been a dedicated supporter for many years. He also has provided leadership to the Delaware Chapter’s Board of Trustees, staff, and the many volunteers with whom he has worked. Helen Serbu Volunteer of the Year Award Mindy Rolkowski, this year’s Volunteer of the Year award recipient, demonstrated outstanding commitment and leadership to the Chapter through involvement at Walk MS and Bike to the Bay.

See photos from this event and the PNC Thanksgiving Day Run/Walk for MS online at www.msdelaware.org or www.facebook.com/msdelaware. TOLL FREE NUMBER 1 800 344 4867

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RESEARCH

STRESS AND MS

differently from those who had not developed MS. Although this sounds persuasive, Dr. Riise cautions that more research is needed to definitively exclude stress as an MS risk factor.

VITAMIN D IN AFRICANAMERICANS WITH MS

Stress may play a role in exacerbating MS flares, but does it cause the disease in the first place? A new study suggests that stress does not appear to increase the risk of developing MS. The study, published in Neurology, May 31, 2011, focused on two large groups, totaling almost a quarter million women, from the Nurses’ Health Study, which has followed a large number of female nurses for decades. The nurses were asked to report on general stress at home and at work, and also any physical or sexual abuse as children or teenagers. The investigators, led by Trond Riise, PhD, University of Bergen, Norway, compared the answers between those nurses who had developed MS and those who had not. They also took into account age, ethnicity, smoking habits and other variables that have been linked to an increased chance of developing MS. The researchers found that those who later developed MS had not responded significantly 8

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Research increasingly points to low levels of vitamin D in the blood as a risk for developing MS. A new study, [www.neurology.org/ content/76/21/1824] funded in part by the National MS Society, does show that AfricanAmericans with MS have lower levels of vitamin D than African-Americans who don’t have MS. Researchers Jeffrey Gelfand, MD, Ari J. Green, MD, and colleagues at University of California, San Francisco, found that of the group with MS, 77% were deficient in vitamin D, compared to 71% of those without MS. The study, based on examining 339 African-Americans with MS and 342 without the disease, found no link between vitamin D levels and how severe the disease was. African-Americans in general have an increased risk for low vitamin D levels, possibly because their skin has large amounts of melanin, which acts as a filter of ultraviolet light. This in turn limits how much vitamin D the body Continued on next page


Clinical trials update

The risk of MS in African-Americans is about half that of Caucasians. However, the same researchers previously reported that AfricanAmericans tended to have a more aggressive course of MS than Caucasians, a higher risk for mobility impairments, were more likely to develop MS later in life and were at higher risk for symptoms in the optic nerve and spinal cord.

It features 130 studies that are in progress or recently completed. These cover neuroprotective agents; symptom medications; rehabilitation interventions such as cycling for improving MS-related depression, mobility and cognitive function; and more.

A link to herpes? Viruses are well recognized as causes of nervous system damage and inflammation, so it is possible that a virus may set off MS. Various types of evidence point in particular to an association between MS and EpsteinBarr, a herpes virus that causes infectious mononucleosis and other disorders. Now, a new study hints at another possible link, this time between herpes zoster and MS.

The Society’s annual list of clinical trials in MS is now available online at www. nationalMSsociety.org/clinicaltrials.

More than 52,000 volunteers have participated or are currently participating in these studies. Their participation—and yours—makes it possible to look forward to new therapies for MS.

OK to mix pregnancy and MS Research continues to confirm it’s OK to mix pregnancy and MS.

A study published online in Annals of Neurology June 27, 2011, compared 432 Researchers in Taiwan have reported that people births to women with MS and 2975 births who experienced an attack of the virus-triggered to women without MS, confirming previous findings that, overall, the women with MS had herpes zoster—which usually shows up as the normal pregnancies. The mean birth weight skin rash known as shingles—were more than three times as likely to develop MS over the next and gestational age of babies did not differ year than individuals who did not have an attack. and women with MS were not at greater risk The study, reported in The Journal of Infectious of adverse deliveries, including Caesarean Diseases (6/7/2011), used a large data set of sections. Taiwanese people. However, since people of It was the first study where researchers were Chinese genetic background are at lower risk for MS than Caucasians, the researchers do not able to control for other factors that could know yet if this finding will translate to other affect outcomes, such as disability levels, populations. obstetrical history and body mass index.

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RESEARCH

can produce. Study participants with a higher proportion of European genetic ancestry were less likely to have low vitamin D levels than participants with a lower proportion of European ancestry.


CHAPTER NEWS

Readathon Kicks Off 36th Year! 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 multiple sclerosis. 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. In recent years, Readathon has changed to become a yearMSDELAWARE.ORG round program! Schools, libraries, and individual children See video from 2011 are able to pick any month to participate in Readathon. Readathon top fundraiser Typically, most schools choose to read during the month of Sam Oberly (above) March which is National Reading Month and includes the National Education Association’s Read Across America Day in celebration of Dr. Seuss’s Birthday. Schools and libraries that raise a certain amount of money are eligible to receive cash rewards, provided by grants from Laffey-McHugh Foundation and DuPont, to buy books, educational materials, and more. Eleven schools participated in 2011 and raised a combined total of almost $31,000! For more information or to get your school signed up now, please contact Ainsley Hertrich at (302) 655-5610, ext. 1-800-FIGHT-MS or ainsley.hertrich@nmss.org.

PJ FITZPATRICK INC. SPONSORS GUTTER CLEANING DAY In August, local company P.J. Fitzpatrick INC. deployed nearly twenty volunteers to clean gutters and perform minor repairs at the homes of Delawareans living with MS. “So often, for those living with MS, it becomes a burden to keep up with household chores and maintenance. The volunteers at P.J. Fitzpatrick truly helped to lighten that load for these homeowners,” said Kate Cowperthwait, Chapter President. Additionally, the company donated $400 to the Delaware Chapter from an online partnership in which the company agreed to donate $1 to the MS Society for every new fan they gained on Facebook during the month of July. Have a business and interested in partnering with the MS Society for Caring Hands or MS Awareness Week? Email Ainsley.Hertrich@nmss.org or call 302-655-5610. 10

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Despite the threatening weather forecast, approximately 1,800 cyclists participated in Bike MS: Bike to the Bay on September 24th and 25th - and were pleasantly surprised by clear skies for the ride!

Bike to the Bay 2011 What They’re Saying..

John Haupt, Pennoni Associates Team Captain, “Leading up to Bike to the Bay, I have that feeling of excitement that I do around Christmas. I can’t wait for it to finally be here, then after it is over, I’m a little disappointed that it is over for another year.”

Delaware Chapter staff greeted cyclists as they lined up to kick off the ride. Miss Southern Cyclist Patricia Flanigan declared, Delaware Stephanie “Love the re-route through Milton. Bailey sang the National That was a nice change and the hills Anthem, and after a quick were less challenging than they countdown, the Y’s Guys, appeared (thankfully).” 2010 Top Fundraising Team, led the first wave Y’s Guys Team Captain Tom of cyclists out on the Harrigan stated: “Clearly your route (pictured below). control of the weather was the most impressive, followed VERY The event boasted a lot closely by the fabulous upgrade of exciting changes this to the Saturday finish facility and year. Changes to the logistics- Great space, no traffic route, developed by a issues, great layout!” Committee comprised of

For more photos visit www. facebook.com/ msdelaware

BIKE MS

CYCLISTS PUT THE PEDAL TO THE METAL AT BIKE TO THE BAY

NRG Energy, Bike to the Bay’s title sposnor, at the start line. veteran Bike to the Bay cyclists, were commended. Perhaps the biggest change was the new Saturday finish line at Cape Henlopen State Park. The park offered cyclists room to spread out, which resulted in the largest Team Village to date! So far, more than $800,000 in funds have been raised, and with donations coming in every day from the ride, the chapter is expecting to raise $975,000. Proceeds from the event provide programs and services to the more than 1,550 Delawareans living with MS and their families as well as research into what causes MS, the development of new and more effective treatments, and, one day soon, a cure for MS. Register for Bike MS: Bike to the Bay 2012 to be held on September 22nd and 23rd at www.BiketotheBay.org or by calling 302-655-5610.

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Free mailing for blind and handicapped

National MultipleSclerosis Society Delaware Chapter

Two Mill Road, Suite 106 Wilmington, DE 19806

Lean on Us statewide support GROUP listing

More details at www.msdelaware.org

Newark - Main Street Circle of Friends 2nd Wednesday of the month 1:00 pm - 3:00 pm Newark Senior Center 200 White Chapel Road, Newark Leader: Sara at (302) 737-4694

Coping with Life & MS 1st Tuesday of each month 4:00 pm - 5:30 pm St. Paul’s United Methodist Church 1314 Foulk Rd., Wilmington Contact: Barb (302) 792-9532

Men with MS (men only group) 2nd Thursday of the month 5:30 pm - 7:30 pm MS Society office 2 Mill Rd., Wilmington 19806 Leader: Robert (302) 529-1707

Dover Friday Night Group 3rd Friday of every month 5:30 pm - 7:30 pm First Baptist Church of Dover 301 Walker Road, Dover Leader: Andy at 302-264-9763

Coffee & Conversation 1st and 3rd Thursday of the month 10:30 am - noon NEW! Congregation Beth Emeth 300 W. Lea Blvd, Wilmington Leader: Sonia at (302) 475-3938

Sussex County Shore Group 1st Wednesday of the month 6:00 pm - 8:00 pm St George’s Chapel, Parish Hall 20322 Beaver Dam Road, 19951 Leader: Jamie at (302) 684-4513 or Kay at (302) 422-9584

Shore Group Two 2nd Wednesday of the month 1:30 pm - 2:30 pm CHEER Community Center 20520 Sandhill Road, Georgetown Leader: Jamie or Monroe at (302) 684-4513


MS Connection Winter 2012