2011 Issue 3
Greater Delaware Valley Chapter
Can Vitamin D
REDUCE MS Attacks?
For a number of years researchers across the United States have been investigating how genetics and environmental triggers, like low vitamin D levels, can make people susceptible to multiple sclerosis (MS). Vitamin D is produced in the body in response to direct exposure to sunlight, and anything that limits this exposure also limits the amount of vitamin D a person produces.
INSIDE THIS ISSUE:
Continued on PAGE 6
New Leadership for Society Page 8
Scholarship Recipients Page 10
Department of Defense Faces of MS Research Funding Pages 22-23 Page 14
Upcoming events National Multiple Sclerosis Society Greater Delaware Valley Chapter 1-800-548-4611 30 South 17th Street, Suite 800 Philadelphia, PA 19103 Chair Brian DiDonato Vice Chairs Larry Kane Marianne Jackson
Vice President, Communications Kevin Moffitt MSConnection Editor Yarissa Reyes
President Tami Caesar MS stops people from moving. The National MS Society exists to make sure it doesn’t. We help each person address the challenges of living with MS. In 2010 alone, through our national office and 50-state network of chapters, we devoted $159 million to programs and services that improved the lives of more than one million people. To move us closer to a world free of MS, the Society also invested $37 million to support 325 new and ongoing research projects around the world. We are people who want to do something about MS now. Join the movement at nationalMSsociety.org. Early and ongoing treatment with an FDAapproved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health-care professional and contacting the National MS Society at nationalMSsociety.org or 1-800-FIGHT-MS (1-800-344-4867). Š2011 National Multiple Sclerosis Society, Greater Delaware Valley Chapter
MSConnection welcomes letters to the editor. Send letters to pae@nmss.org or the address above. Include your name and a phone number or email address where we can reach you, if necessary. Please note: we may edit your letter for length and content.
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To register for these or other events, visit calendarMS.org. THURSday, October 20
Community Outreach Day Cherry Hill Library, Cherry Hill, N.J.
Saturday, October 22
Enough is Enough: An MS Research Update Wilmington, De.
Saturday-Sunday, October 22-23
Challenge Walk MS 2011 Brandywine Valley and Historic Philadelphia
Wednesday, October 26 New Options for Spasticity Pomona, N.J.
THURSday, October 27 Community Outreach Day UMDNJ, Stratford, N.J.
THURSDAY, NOVEMBER 17
Annual Meeting and MS Research Update West Conshohocken, Pa. See page 5 for details Susan, diagnosed in 1995
IN BRIEF
FDA issues warning about meds containing oxybutynin
The FDA has added a warning to the labeling of some medications used to treat urinary problems in people with MS stating that angioedema (a swelling similar to hives that occurs under the skin) of the face, lips, tongue and/or larynx has been reported with oxybutynin taken orally. The swelling was severe enough in some individuals to interfere with breathing and required hospitalization and emergency treatment.
Breastfeeding may not stop MS flare-ups In a study of nearly 300 pregnant women with MS, Italian researchers found no evidence that breastfeeding lowered a woman’s odds of having worsening symptoms in the months after giving birth. Experts say that women with MS should not make breastfeeding decisions based on the hope it will prevent relapses.
Glandular fever linked to MS
Gender differences explained by B cells
A new study from the Australian National University (ANU) has found those who have glandular fever antibodies have a much greater risk of developing multiple sclerosis. The research, published in the journal Neurology, could lead to new treatments or a better understanding of the cause of this disease.
Researchers at National Jewish Health have discovered a type of cell that may contribute to autoimmune disease. The findings also suggest why diseases such as multiple sclerosis strike women more frequently than men.
Number of MS risk genes identified has doubled In the largest MS genetics study ever undertaken, a global collaboration of scientists has identified 29 new genetic variants associated with MS, and confirmed 23 others previously associated with the disease, verifying a major role for the immune system in the development of MS. The study involved nearly 10,000 people with MS and more than 17,000 controls without MS, and was funded in part by the National MS Society. A follow-up study will be funded by the Society.
The cells, a subset of immune-system B cells, make autoantibodies, which bind to and attack the body’s own tissue. Researchers found higher levels of these cells in elderly female mice and humans with autoimmune diseases. These cells increased as healthy female mice aged, but remained at constant low levels in healthy male mice.
Botox approved for urinary incontinence due to MS The U.S. Federal Drug Administration recently approved Botox to treat individuals with urinary incontinence, or bladder overactivity, resulting from MS. When Botox is injected into the bladder, it relaxes, improving its storage capacity and reducing the risk of urinary incontinence.
TOLL FREE NUMBER 1 800 548 4611
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President’s message
Making a measurable difference
F Tami Caesar, President
or years, the National MS Society has assured donors and its members that we are using financial resources responsibly while doing everything possible to end this disease.
From the quality of life grants to the millions spent on research, we have told you how we are making a difference in the lives of people living with MS across our region and, in some cases, around the world. However, “telling” may no longer be good enough. The need for tangible indicators of progress are the impetus behind our chapter’s decision to be the sole funder of the Vitamin D research project described in this issue’s cover story. This is the first time we have taken on funding a clinical trial and it is not a decision that the chapter board took lightly, especially in the current economic environment. In the end, the chapter decided to move forward with what amounts to a $1.3 million commitment because we want to make a tangible difference by supporting a project that could change the future of MS treatment. Regardless of the outcome, this study will shed much-needed light on the potential of this vitamin to help people living with MS. It’s a study that could lead to new treatment options for people with all forms of MS and results will be available in just three years, a very short period of time in the world of medical research. 4
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This focus on results is also part of our current approach to outreach. Instead of talking about our need to be in the community more, we are taking action. In just over a month we held informal gatherings for people newly diagnosed with MS across our chapter area, including the towns of Sewell, Egg Harbor Township and Haddonfield in New Jersey as well as King of Prussia, Bethlehem and Wyomissing in Pennsylvania. These meetings are in addition to the 13 Community Outreach Days held in seven different sites across our area so far in 2011. And finally, I would be remiss if I did not mention the MS Means awareness campaign that ran in Lehigh Valley and the Philadelphia area in 2011. The MSmeans.org site attracted more than 1,500 new visitors so far and more than 80 of them took the time to express what MS means to them. More importantly, we are currently conducting a research survey with area residents to measure the success of the campaign in increasing public understanding of the disease. Through our commitment to making a measurable difference in the lives of local people living with MS, we are making strides and I look forward to sharing the results with you in the coming months. Rest assured that we won’t stop until MS is no more . . . and that is the most important metric of success there could possibly be. Warmest regards,
Tami Caesar President
TORE
Meet National Multiple Sclerosis Society trustees and staff, hear about the successes and challenges of the past year and learn about the latest research news from an expert panel of speakers, including:
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Ellen Mowry, MD, MCR Associate Professor of Neurology RESTORE END University Johns Hopkins Judith Grinspan, PhD Research Associate Professor of END Neurology, Children’s Hospital of Philadelphia Simon G. Gregory, PhD Associate Professor of Medical Genetics, Duke University
The panel topics will include the role of vitamin D in stopping MS progression,
Annual Meeting
TOP
Join us for our 2011 Annual Meeting & MS Research Update genetics research, and nervous system repair. This program is for people living with MS and their guests. Dinner will be served. There is no cost to attend, but registration is required. Please register by no later than November 10 by calling 1-800-FIGHT-MS and pressing option 1, 9 a.m. to 7 p.m., Monday to Friday, or visiting calendarMS.org. Note: The Chapter Annual Meeting includes a vote on the 2012 Board of Trustees. If you are not able to attend and would like to submit a vote by proxy, please call us at 1-800-548-4611. THURSDAY, NOVEMBER 17 6:30 – 8:30 p.m. Philadelphia Marriott West 111 Crawford Ave., West Conshohocken, PA Free on-site parking is available.
CONGRATULATIONS TO THE 2011 GREATER PHILADELPHIA MS LEADERSHIP CLASS The MS Leadership Class honors corporate leaders for their outstanding contributions to the civic, business and cultural betterment of the Greater Philadelphia region. Participants conduct a special gifts campaign for the National MS Society as part of the program. The MS Leadership Class has raised more than $1 million since its inception to fund research into a cause and cure for MS. For a complete list of the 2011 Greater Philadelphia MS Leadership Class, please visit www.nationalMSsociety.org/PhiladelphiaLeadership. TOLL FREE NUMBER 1 800 548 4611
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Vitamin D
WILL VITAMIN D Continued From PAGE 1 How does a low vitamin D level contribute to causing MS? Scientists aren’t sure but a number of research investigations are looking into this connection. Ellen Mowry, MD,MCR, an assistant professor of neurology at Johns Hopkins University, is investigating whether taking vitamin D supplements impacts the course of the disease. Dr. Mowry was awarded a three-year research grant from the National MS Society to conduct a randomized, double-blind clinical trial to determine whether high-dose vitamin D added to standard therapy with glatiramer acetate (Copaxone) reduces the frequency of MS relapses. “The purpose of this trial is to find out if giving high doses of vitamin D supplements to people with MS leads to fewer MS attacks or fewer MS lesions from developing on MRI scans,” says Dr. Mowry. The Institute of Medicine has recently set a recommended dietary allowance for vitamin D of 600 international units (IU) daily for people aged 1 to 70 and 800 IU for those over 70. In this trial, 172 people who have MS will be randomly assigned to take either 600 IU or 5,000 IU of vitamin D; all participants will start on standard glatiramer acetate therapy daily. During the two years of the study, information about relapse frequency, disability, MRI scans
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REDUCE LESIONS and other measures of MS activity will be collected from each group. Comparing these measures will show whether high-dose vitamin D supplements affects the course of MS in people who are taking a standard therapy.
BASIS FOR THE STUDY Low vitamins D levels have been shown to increase a person’s risk of getting MS, and we know that patients with MS who have lower vitamin D levels are at increased risk of MS attacks. Still, these research findings don’t mean that giving people extra vitamin D is helpful; it could even be harmful. It’s thus important that we do a randomized study to figure out the answer to this question. “Because we don’t know for sure that it’s safe, and because some people may have contraindications to vitamin D, I don’t systematically recommend that all patients take it,” says Dr. Mowry. “Patients should make the decision about whether or not to take vitamin D with their doctor, knowing that we still aren’t sure if it’s good (and not harmful) for them.”
THE BOTTOM LINE If the study shows that vitamin D supplements reduce disease activity in MS, it is likely that all patients with MS will be given vitamin D in addition to the MS medication they are on. In some places where patients can’t get access to
MS therapies, vitamin D would theoretically be helpful as well. Dr. Mowry’s clinical trial aligns specifically with the first focus area outlined for Societysupported MS research through 2015: We better understand the scientific mechanisms that lead to disease progression and we accelerate the development of new therapies. Ultimately, this study will provide important evidence to show whether vitamin D
This trial may also contribute to advancing the Society’s research focus area to identify risk and triggering factors that cause MS. As noted above, research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS. Better understanding the influence of vitamin D levels in people with MS may help us further understand how those levels affect whether or not someone develops the disease.
Dr. Mowry has assembled an amazing group of expert co-investigators to conduct this study across the country. They are:
Want to learn more about vitamin D and MS?
Daniel Pelletier, MD Yale School of Medicine
Join us on November 17 during our Annual Meeting where you’ll hear from Dr. Mowry about this and other ongoing research. See page 5.
Emmanuelle Waubant, MD, PhD University of California, San Francisco
VITAMIN D
AND SYMPTOMS?
supplements alter MS and whether they are a safe addition to standard MS therapies. If the outcomes of this trial are positive, there is potential that this alternative therapy could also assist people with MS with more progressive forms of the disease.
Participating Site Principal Investigators: Dennis Bourdette, MD Oregon Health Sciences University
Mariko Kita, MD Virginia Mason Medical Center
Peter Calabresi, MD Johns Hopkins University
Fred Lublin, MD & Tracy DeAngelis, MD Mount Sinai School of Medicine
Anne Cross, MD Washington University St. Louis Omar Khan, MD Wayne State University
Clyde Markowitz, MD University of Pennsylvania
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This research is being funded by the chapter and furthers our commitment to the NOW: No Opportunity Wasted, an MS Research Revolution campaign. For more information about this and other ongoing research and to support cutting edge research like this, please contact Kristina McGraw at 1-800-548-4611 or by email at kristina.mcgraw@nmss.org. TOLL FREE NUMBER 1 800 548 4611
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NEWS
SOCIETY NAMES NEW PRESIDENT AND CEO The board of directors of the National MS Society recently announced that effective October 1, Cyndi Zagieboylo will become the Society’s new President and CEO. With more than 25 years’ experience at the Cyndi Zagieboylo National MS Society, President and CEO Cyndi began her career at what was then called the Massachusetts chapter as a director of support services where she worked directly with people with MS, health-care professionals and the community. From there, she focused on developing programs and services in the southeast and after that became an area director for the northeast where she worked on fund development, financial analysis, strategic planning and mission delivery as well as board member engagement. As vice president for chapter programs she shifted her focus nationwide to vastly improve the strength of the chapter structure for the Society to better benefit people with MS. In this role she focused on ensuring the Society grew to be a strong unified and mission-focused organization, she helped establish the Information and Resource Center, implemented the chapter certification standards program and developed several key
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processes for chapter support that remain in place today. As chief field services officer, her most current position, Cyndi’s role in the establishment of our regions was critical as she drove the process to align territories and hired our regional executive vice presidents. Further, she played a key role in establishing our 2011 through 2015 strategic response as a member of the core strategy and implementation team. “Cyndi knows the MS Society inside and out and is perfectly positioned to become the National MS Society’s next CEO. Her 25-plus-year career at the Society and her vast experience from chapter to regional to national leadership demonstrates her deep knowledge of how this organization functions. Further, her strategic thinking and resultsdriven track record speak to her strength as a leader,” said Tom Kuhn, national board chair and search committee member. The national board also thanked the Society’s current President and CEO, Joyce Nelson. Kuhn added, “With 28 years of service to the Society, Joyce leaves an indelible mark on our organization and has made significant contributions to moving us closer to a world free of multiple sclerosis. When she announced her intent to retire nearly nine months ago, we knew that she was leaving the organization in a position of strength and we are confident that Cyndi will allow us to build on our strengths.” In a written statement Ms. Zagieboylo said, “I am both honored and excited to become the next CEO of the National MS Society. I have devoted my career to people living with and affected by multiple sclerosis. I know that leading the National MS Society is a tremendous responsibility and I look forward to working together with everyone in the MS movement to bring us closer to a world free of MS.”
the program so that we currently have two cocaptains for each county the chapter covers in New Jersey.
Each year, local volunteers are nominated to receive national recognition for their outstanding service to the National MS Society. Congratulations to Pamela Trosino, who was recently inducted into the Society’s Volunteer Hall of Fame for her work as an advocacy volunteer.
In addition, Trosino volunteers to go to any meeting to speak about the importance of advocating. She visits selfhelp groups to promote the advocacy program and trains new volunteers. She is constantly networking for the growth of the advocacy program.
RATHER THAN WAITING FOR SOMEONE ELSE TO TACKLE THE ISSUE, SHE STEPS IN TO TAKE CARE OF IT HERSELF. AND SHE DOESN’T STOP UNTIL SHE GETS RESULTS.
Trosino said she had no idea she was even being nominated for this honor. Imagine her surprise when she received an email from Joyce Nelson, president and CEO of the Society, letting her know she was among the few chosen for induction. “I was completely baffled,” she said. She emailed Chapter President Tami Caesar asking if this was a mistake. Tami assured her it was not. “I was so humbled,” said Trosino.
While Trosino has volunteered in many functions for the National MS Society, her true calling has been in the advocacy field. Trosino became the chapter’s first County Captain soon after attending her first New Jersey Lobby Day event. She has since grown
Volunteers
Local volunteer inducted into Hall of Fame
As a member of the N.J. Government Relations Committee, she also frequently meets with Pamela Trosino N.J. state senators. These meetings allow her to address disability rights, research, access to quality health care and long-term health care on behalf of the National MS Society. “Pam is an inspiring example to activists not only within our chapter area, but all of New Jersey,” said Karen Mariner, Vice President of Services and Activism. “She is a true leader in the MS movement. She recognizes opportunities to improve the lives of people living with MS, and rather than waiting for someone else to tackle the issue, she steps in to take care of it herself. And she doesn’t stop until she gets results.” Trosino hopes others are inspired to volunteer and try to achieve something great. “Just give back a little, and together we will continue to make a difference,” she said. “A feeling of accomplishment while sending out good Karma and helping those living with MS will bring you rewards each day!” TOLL FREE NUMBER 1 800 548 4611
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Scholarships
SEVEN LOCAL STUDENTS RECEIVE SOCIETY SCHOLARSHIPS The Greater Delaware Valley Chapter has awarded scholarships to seven local students through its annual scholarship program. The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent
who does; or anybody living with MS who has not been to a post-secondary school. Scholarships range from $1,000 to $3,000 and typically cover one year. Information about scholarships for 2012-13 can be found on the National MS Society website, nationalMSsociety.org.
Congratulations to this year’s outstanding scholarship recipients! Andrew Smith Robesonia, Pa. Conrad Weiser High School Plans to attend Cornell University as an industrial and labor relations major.
Jacob Evans Schnecksville, Pa. Parkland High School Plans to attend Lehigh University as an engineering and music double major.
Alec Roth Cherry Hill, N.J. Cherry Hill High School East Plans to attend Rutgers University-New Brunswick as a business major.
Elizabeth Brooks Ardmore, Pa. Harriton High School Plans to attend Drexel University as a nursing major.
Chelsea Dean Erial, N.J. Timber Creek High School Plans to attend Augusta State University as a nursing major.
Elizabeth Schew Berwyn, Pa. Conestoga High School Plans to attend University of New Haven as a fire service administration major.
Scholarship Manual This guide will help you identify scholarships, avoid scams and navigate your way through the complex financial aid process. View it online at nationalMSsociety.org/pae (click on “Programs & Services”, then “Scholarships.”) 10 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Jesus Carmona Schuylkill Haven, Pa. Schuylkill Haven Area High School Plans to attend Penn State Wilkes-Barre as a business administration major.
The Society’s network of Pediatric MS Centers has been awarded a five year grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched controls without MS for a single visit to one of Children with MS 10 centers around attend Champ Camp, the country – in held at Camp For All California, New York, in Burton, Tex. Photo: Massachusetts, Chase Shull Artisan Alabama, Minnesota, Portrait Studios, Texas, Pennsylvania courtesy of the South and Washington. Central Region. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email janace.hart@ucsf.edu or call 415-514-2476.
CCSVI studies – one year update
NEWS
Pediatric MS studies receive federal support
The first-year progress reports from seven Society-funded 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 nationalMSsociety.org/ccsvi.
Get the latest! Visit nationalMSsociety.org/pae to sign up for monthly MS eNEWS.
For more information about pediatric MS, visit nationalMSsociety.org/pediatricMS. TOLL FREE NUMBER 1 800 548 4611 11
ADVOCACY
MEET YOUR LEGISLATOR U.S. Congressman Jon Runyan New Jersey District 3 A former Philadelphia Eagles’ player, Congressman Jon Runyan was elected to the U.S. House of Representatives in November 2010 to represent New Jersey’s 3rd Congressional District in the 112th Congress. The 3rd District is located in central New Jersey and stretches from the Pennsylvania border to the New Jersey coastline. It encompasses parts of Burlington, Camden and Ocean counties. What are your legislative interests and top priorities? A top priority of mine – one that I have held close to my heart long before being elected to Congress – is my strong interest in health related issues. While a member of the Philadelphia Eagles, I was greatly involved with many local charitable organizations including the Alzheimer’s Association – Delaware Valley Chapter, the LeukemiaLymphoma Society, the American Red Cross, the Cystic Fibrosis Foundation and the Juvenile Diabetes Foundation. I also hosted the “Score for the Cure,” which is an annual Golf Tournament that benefits prostate cancer research in New Jersey. Therefore, when I came to Congress, it seemed only natural to support the federal government’s role in this area. It has a successful track record
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of facilitating research that leads to clinical advancements in the treatment of MS, as well as many other illnesses that impact millions of Americans and their families. What is the Congressional Multiple Sclerosis Caucus and why did you get involved? The Congressional Multiple Sclerosis Caucus was created to raise awareness and promote education about MS, as well as generate solutions to the many challenges facing people with this disease. The Caucus is co-chaired by Congressmen Michael Burgess, MD (TX-26) and Russ Carnahan (MO-3). The decision to join was an easy one. As you may know, my Chief of Staff Stacy Barton has MS. Through Stacy, I have learned a great deal about the disease. She has brought to my attention many of the issues people with MS struggle with on a daily basis and the crucial need for the federal government’s continued participation in the area of MS research. The more I learned about MS, the more I knew I wanted to get involved. I view the Congressional Multiple Sclerosis Caucus as an important bipartisan vehicle for educating members of Congress about MS and the vital role the federal government has played in increasing research of MS.
My district is home to the largest Veteran population in New Jersey, many of whom are returning soldiers suffering from Traumatic Brain Injury (TBI). During my first few months in office, I began to learn more about TBI issues and was made aware of the Congressionally Directed Medical Research Programs’ Psychological Health and Traumatic Brain Injury (PH/TBI) Research Program. I was able to see first-hand all the good work they accomplish through funding medical research of TBI. My involvement with the Caucus has also shed greater light on CDMRP. This innovative partnership between the public, Congress and the Federal Government helps to develop funding opportunities for specific diseases such as MS, making CDMRP an important force in improving the health of all Americans
Pennsylvania Local Government Relations Committee We’re pleased to announce the launch of the newly-formed Pennsylvania Local Government Relations Committee (GRC). The Members of the GRC have two main responsibilities. The first is to assist the Society in determining our public policy priorities to meet the strategic response of our advocacy efforts. As a group with unique access to the issues and problems facing people living with MS, as well as familiarity with the local and statewide policy process, the group’s recommendations will
afflicted by this disease. Although there is no cure for MS, the medical research funded through CDMRP allows doctors and researchers to find effective ways to alter the disease progression, manage symptoms and improve quality of life; and hopefully it will one day enable them to learn the cause of MS.
Advocacy
Are you familiar with Congressionally Directed Medical Research Programs? If so, how important is funding for these programs?
What’s the best way for constituents to work with you? The best way for constituents to work with me is to contact either my offices in New Jersey, located in Mt. Laurel and Berkeley, or contact my office in Washington, D.C. I have a great and responsive staff who are ready to serve you. Constituents may also go to my website to email me or for useful information (www.Runyan.House.gov), and can follow me on Facebook and Twitter for up-to-date information and announcements.
assist the Pennsylvania Collaborative Action Network in prioritizing the issues it addresses. The GRC’s second responsibility is to communicate the Society’s messages to public officials. As people living with MS, caregivers and health-care professionals, interacting with public officials not only will strengthen our messages, but also broaden the profile of those affected by the disease. The group will meet early this fall to define what its strategic plan will be for the chapter. If you have suggestions on issues you would like to see addressed by the committee, please email karen.mariner@nmss.org or call 1-800-FIGHT-MS. TOLL FREE NUMBER 1 800 548 4611 13
ADVOCACY
SOCIETY SEEKS RESEARCH FUNDING FROM THE DEPARTMENT OF DEFENSE
T
he Society recently asked Congress to support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for multiple sclerosis research in Fiscal Year 2012. For the more than 23,000 U.S. veterans diagnosed with MS and more than 400,000 people living with the disease nationwide, this funding will provide the necessary resources so researchers can explore potential environmental risks, new treatments and a cure for MS. Emerging evidence indicates a potential link between combat service and an increased incidence of MS. Over the past four federal funding cycles, approximately $17 million has been allocated to MS research in the CDMRP. While this is a great start, the overwhelming number of grant submissions demonstrates a clear need for additional funding. The $15 million for this program can give scientists the means to better understand the causes of MS and help find a cure. The CDMRP is funded through the Department of Defense via the Defense Appropriations Act. Dollars for the CDMRP are added every year during the budget process by members of Congress, in response to requests by advocates and disease survivors. Given emerging evidence linking combat service to increased incidence rates of MS, we believe this is an appropriate source for MS research funding. 14 JOIN THE MOVEMENT: nationalMSsociety.org/pae
TAKE ACTION We need your help to secure funding for MS research under the CDMRP. Ask your Representative to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure. The large number of grant proposals submitted each year for MS projects indicate that there is a clear need for more funding for MS research. It is important that you act now to ensure this funding stream for MS research is maintained! Contact your Representative today and ask him/her to show his/her support for people living with MS by signing onto a bipartisan Dear Colleague letter circulated by Representatives Burgess (TX-26) and Carnahan (MO-3), in addition to including the MS program in the CDMRP in their Department of Defense appropriations request.
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 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 preexisting conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out? 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. 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.
NEWS
UP-TO-DATE FAQS ON THE AFFORDABLE CARE ACT
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 at www.adata.org or call 1-800-949-4232 for information and training on how to implement the ADA in your area.
TOLL FREE NUMBER 1 800 548 4611 15
SERVICES
CHAPTER FORMS CHRONIC DISEASE MANAGEMENT COALITION
T
he Greater Delaware Valley Chapter is pleased to announce the formation of the Chronic Disease Management Coalition. The Coalition is a holistic team of allied health-care professionals who have dedicated their time to improving the current service delivery model for people and families living with MS.
Areas of focus include: n Financial/cost analysis n Speech/cognitive functionality n Physical functionality
The mission of the Chronic Disease Management Coalition is to mobilize professionals to demonstrate the cost effectiveness of a chronic disease management model and how it improves both access to services and holistic functionality for persons living with and affected by MS.
n Cardio/pulmonary functionality
The purpose of the Coalition is to bridge gaps to interdisciplinary therapeutic services, create more cost effective comprehensive care, generate a higher quality of comprehensive care, and increase and improve access to comprehensive care.
n Relationship and divorce rates/sexual dysfunction
The Society wants to ensure we are reaching people living with MS in rural and underserved areas. The Coalition will take a look at programs and services designed to help people manage the disease outside the realm of disease-modifying drugs. For example, the Coalition will explore counseling services, physical activity, nutrition, mindfulness/ meditation and symptom management. 16 JOIN THE MOVEMENT: nationalMSsociety.org/pae
n Behavioral health functionality n Fatigue severity/sleep management n Quality of life
The Coalition is made up of MS specialists, exercise physiologists, outpatient rehabilitation specialists, physical therapists, occupational therapists, speech pathologists, neurologists, psychologists and social workers from such esteemed institutions as Lehigh Valley Hospital/Good Shepherd, Total Rehab and Fitness, Drexel/Hahnemann Hospital, University of Medicine and Dentistry of New Jersey and University of Pennsylvania. For more information about the Coalition, please call 1-800-548-4611.
Biogen has started a new co-pay and free drug infusion assistance program. Please contact MSActiveSource at 1-800-4562255 to enroll in the program.
infusion costs directly from the site of care.
To participate, you must ask directly for infusion assistance. If you have medical insurance, the co-pay assistance program will cover up to $100 of your co-pay for infusions. To receive this benefit, you must provide a copy of your Explanation of Benefits from your insurance company.
If your infusion costs are more than $100, please contact a major hospital in your area. Most major hospitals have a contracted rate where they will work with Biogen for the $100 rate.
For patients without medical insurance, the uninsured program will cover up to $100 after receiving an itemized bill of customary
NEWS
Infusion financial assistance for patients on Tysabri Please note this program does not cover the cost for a doctor’s office visit.
If you’re not taking Tysabri due to high infusion costs, please contact MSActiveSource at 1-800-456-2255 and let them know you are going to have to go off the drug due to high infusion costs.
Women needed for estriol trial The University of Pennsylvania is looking for women with relapsing-remitting MS for a 24-month study to see if there are less relapses with the treatment of Copaxone injections plus oral estriol as compared to the treatment of Copaxone injections plus oral placebo.
You must also have had at least one relapse within the last two years. You are not eligible for the study if you are pregnant, breastfeeding, smoke or have other serious medical conditions.
Qualified participants are:
Call Vanessa Zimmerman, the study coordinator, at 215-349-5162 or email her at Vanessa.Zimmerman@ uphs.upenn.edu for further information.
n Women 18-50 years old n Diagnosed with relapsing-remitting MS n Able to walk without any aids
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Ways to keep your kitchen organized
Keeping your kitchen organized and making some small adjustments can make a big difference in maximizing your time and energy when cooking. Use helpful kitchen gadgets to make chopping and stirring less of a chore. They can even make cooking more fun. This section will give you tips and hints that can help simplify your experience in the kitchen.
1. Watch the cutting. Slicing and dicing
meat or vegetables when you have MS can be challenging. But you can purchase precut foods, like carrots, salads and poultry. Or you can use kitchen gadgets that make chopping and dicing easier. Make sure to secure your cutting board too. This keeps it from slipping when you’re slicing, dicing and grating. A non-slip mat or wet towel under the board works well.
2. Keep your cool. If you’re sensitive to heat, keep a fan in the kitchen to keep cool. Use the microwave—it makes meal prep faster and will not aggravate your heat sensitivity.
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3. Go electric. Electric appliances such as
food processors, blenders, mixers and can openers are easier on your hands than manual ones.
4. Make things more accessible. Place
frequently used appliances (toasters, food processors and blenders) on your counter top. Or keep utensils, pots and pans on a pegboard.
5. Place a stool near your counter top. It’s
easier when you can sit during food prep.
Many thanks to all of our volunteer fundraisers who are helping create a world free of MS. Rose Tree Woods Swim Club in Broomall, Pa. sponsored its first swim-a-thon on June 12. The event raised $1,430 in honor of “Team Sophia.” Sophia Agatone is the sister of two of the club’s swimmers, Matthew and Ashley. Sophia was diagnosed with MS two years ago when she was five years old. Kudos to Hannah Mittermeier of Coplay, Pa. who collected $200 at her 12th birthday party in lieu of gifts. Hannah donated the money to “Team Holmes” in support of Walk MS Lehigh Valley. On May 21, the Souderton Area High School softball team participated in the first annual Homerun Derby to benefit the Society. Pledges were collected for each homerun throughout the season and the team raised almost $1,500. Coach Courtney Hughes who organized the event said, “It was a neat event, and we look forward to holding it again next year.”
Be the next fundraising all-star!
FUNDRAISING
Community fundraising all-stars
It’s easy to raise money for the National MS Society if you have a computer and an Internet connection. Using social media is becoming one of the most effective ways to fundraise. All of our event participants (you can sign up as a volunteer or a virtual participant for any event if you can’t actually participate) have access to a Facebook application called Boundless Fundraising, which posts fundraising updates with a link to donate to your wall (and your friends’ newsfeeds) and allows you to share your story and donate your profile picture to a Society logo. Facebook is by far the most widely used social media site, so if you don’t use any others, you should definitely use Facebook. If you don’t want to sign up for an event, you can throw your own third-party fundraiser, like a bowling party, restaurant night or beef & beer. Post messages about the event on sites like Facebook, LinkedIn and Twitter. These websites allow you to promote your event and reach out to your personal and business contacts for monetary and item donations. Plus, when someone responds to your post, their friends will see it too, greatly increasing your network and your post’s visibility. Need more ideas? Visit moveforMS.org and click Community Fundraisers on the left.
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Column
MY DIAGNOSIS: an “event” that changed my life By: Jaclyn Schantz
W Jaclyn Schantz
hen I noticed my handwriting was not normal I brushed it off and put the blame on the fact that I use a computer all day at work and hardly write with pen and paper anymore. Yup that was it; I just don’t use that skill these days…
Throughout the weekend I noticed more and more that my hands were not working right but ignored the signs that something was wrong. It was the weekend before Valentine’s Day and my husband and I had lobster tails and steak to enjoy on Sunday night; this was all that mattered. Monday, February 14, 2011 started with my normal routine and a note to my husband, Matt. It was a letter to say I love you with a short grocery list that was virtually unreadable. In fact, it looked like a two-year-old wrote it but I blamed it on being in a hurry and left for work. This was the longest drive to work I ever made knowing what the possibility was that this could be the first signs of an attack, the first realization that I might really have MS despite being told many times that I don’t. Ignoring all common sense, I went on with my morning and worked through it until about 20 JOIN THE MOVEMENT: nationalMSsociety.org/pae
11 a.m. when I realized that the right side of my body was beginning to go numb. I called my family doctor and he told me to go to the emergency room since he knew my family history and asked me to keep him posted. My family history on paper would tell you that my dad and my sister both have multiple sclerosis. My dad was diagnosed well over 20 years ago and my sister was diagnosed nine years ago. After begging and pleading with my doctor not to make me go to the emergency room, I found myself driving on the highway towards the hospital. I called my husband and asked him to meet me there as I slowly began to realize what was happening. Still in denial of the truth, I stepped out of my SUV nearly twisting my ankle as my foot reached the pavement and my ankle fell to the side. As I made my way to the door of the ER, over and over again I kept telling myself “everything is fine; this is not what you think it is, everything is fine.” My husband soon arrived and was there to sit with me. I did not want to talk much; I just wanted to know he was there for me and that I had someone who loved me sitting next to me. I felt safe for those few brief moments of silence. After a series of blood tests, EKGs and an MRI, the waiting game began. Hours went by and then it came. “You have multiple sclerosis.” The words spoken by the ER doctor will never leave me. She said them so calmly as my eyes welled up and tears began rolling down my
A short time later I had an IV in my arm and I was “hooked up” for my first hour of steroids. I sat there in that hallway with tears in my eyes feeling so alone with people all around me. Finally, 11 hours after arriving to the hospital, I was put in a room and officially admitted. Throughout the week I was in the hospital I went through some very dark moments of not knowing what was going to happen to me. I had trouble walking, my anxiety was through the roof and the depression took over very quickly. But as I lay there wondering what would
GADGET CORNER:
Gadget Corner
cheek, “I am so sorry, but you need to be strong now. I am so sorry.”
happen next I found a light in all the darkness. I decided that I was going to find a way to help others with disabilities. I decided that I was going to be a personal trainer to not just your average Joe (which I had already), but to people who need someone who understands what they are feeling, what they are going through and why it hurts. I was going to personal train people with disabilities. I am currently working on getting myself back to where I need to be as I take it day by day. The last six months have changed my life in ways that are indescribable; however, I feel fortunate to experience something that not everyone will ever understand. I feel as though I have been handed a gift that is both wonderful and horrifying all at once. Now, I am just searching for the best way to share my knowledge with others who might not see the light in the dark that overtakes them.
Multiple Sclerosis: 300 Tips for Making Life Easier [Paperback]
T
his invaluable book by author Shelly Peterman Schwarz is packed with practical information for those dealing with the special challenges of multiple sclerosis. From general advice to unique solutions for saving time and energy to specific ideas, the book contains more than 300 tips, techniques and shortcuts to help MS patients organize and simplify their lives. Among the topics addressed are home safety and accessibility; meal planning and preparation; grooming and dressing tips; computers and technology; and improving memory and concentration. A new travel section covers weekend getaways and extended trips, as well as tips for making car trips, air travel and hotel/motel stays safer and more pleasant. The second edition also includes new sections on managing medical issues, products that make everyday tasks easier and a resource guide. Readers learn to conserve valuable time and energy and develop techniques for making life easier, enabling them to enjoy life to the fullest. Find it at your local bookstore or online where books are sold.
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FACE OF MS
Faces of MS: Sally & Brian Spiwak Sally Spiwak, 58, of Dresher, Pa., did not let MS stop her from enjoying one of the proudest moments in her life, the wedding of her son Nick. With her husband by her side, Sally was determined to get up from her wheelchair and dance at her son’s wedding. This is her story, as told by her husband, Brian. Brian and Sally Spiwak
We didn’t know what the neurologist would say on that day back in 1986 but we knew it wouldn’t be good news. After the birth of our second child, Sally’s limp had grown progressively worse until it could no longer be ignored or explained away. The diagnosis of MS provoked the usual reaction in a young woman. She choked out the words, “I just want to be normal,” before bursting into tears. A two-year-old and a newborn left us with little time for self-pity. The few tears Sally allowed herself ended when I introduced what was to become her mantra for almost two decades. “We cannot allow this disease to change our children’s lives,” I told her. Over the years as Sally’s MS progressed, our children blossomed. Their mother’s disability was an inconvenience but they missed out on nothing because of it. Sports, parties, sleepovers and vacations – we did it all. 22 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Sally, of course, came to rely on the three of us more as her disease progressed. She was lucky to have three people who were happy to take over all of the chores she could no longer do. We installed ramps and an elevator and bought scooters and a specially equipped van to allow Sally to attend every soccer game, wrestling match and school play. Years later, we sent two wonderful kids off to college and settled back to enjoy middle age. Over the next six years, I kept busy teaching and keeping up our old farmhouse. Then, six months before my son’s May wedding, I came to Sally with an idea. I told her that I wanted her to dance at the wedding. Sally agreed and immediately took steps to achieve that goal. She joined the local YMCA and enrolled in a “Silver Sneakers” exercise program twice a week. She badgered her doctor into prescribing physical therapy at a balance clinic three times a week with no time restrictions. She signed up
for bridge lessons and played WII bowling once a week. FACE OF MS
We changed our eating habits drastically. Canned vegetables, potatoes, breads, rice and pasta were replaced by fresh vegetables, squash and chicken. Take-out pizza, steak sandwiches, ice cream and beer disappeared. The desired drastic weight loss never occurred but, by increments, Sally began to look and feel better. She had places to go every day and a goal to shoot for. The wedding was a fantastic affair. As the DJ called the bride and her father and Nick and his sister (in lieu of her mother) to the dance floor, Sally and I inched closer. One minute into the song, we cut in. I spun my daughter away while Sally gave Nick brief instructions. She grabbed his neck and, as he straightened, easily rose from her wheelchair. Friends and family members gasped as they watched Sally stand for the first time in 15 years. For almost a minute, as tears fell and cameras clicked, Sally fulfilled her promise. She danced at her son’s wedding. Will we backslide? Return to our old habits? No way. Our daughter’s wedding is somewhere down the road and, this time, I want Sally to dance with me!
Sally dancing with her son Nick at his wedding
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IT’S NOT TOO LATE TO MAKE YOUR MARK AGAINST MS AT
CHALLENGE WALK MS
OCTOBER 22-23, 2011 Even if you’re unable to walk 30 miles in two days, you can still participate in this event. We rely on our one-day volunteers and two-day Challenge 2011 crew members to make this event a success. From cheering on our walkers to running rest stops, there’s a job that’s perfect for you. Challenge Walk, set in the beautiful Brandywine Valley and historic Philadelphia, takes participants through some of the most picturesque areas this region has to offer and creates lasting memories.
Learn more at walk4MS.org or contact Kristin Marnie at 1-800-883-WALK or via email at kristin.marnie@nmss.org.
BECAUSE EVERY MOVEMENT YOU MAKE AND EVERY DOLLAR YOU RAISE SUPPORTS THE MISSION TO CREATE A WORLD FREE OF MS.