2010 Issue 4
Greater Delaware Valley Chapter
A new approach
to giving back
Volunteers are the engine that keeps the National MS Society moving. From the board members who govern our overall strategy to the business advisory committee that helps design employment services for people living with MS, and from event volunteers to office assistants, volunteers enable us to provide vital local programs, services and research for 13,000 people living with MS in the Greater Delaware Valley.
INSIDE THIS ISSUE:
Continued on PAGE 6
Resources for health-care changes Pages 14-15
Local cyclists ride 8 days in 8 states Page 20-21
Tips for caregivers Pages 22-23
Getting to know Sen. Bob Casey Pages 26-27
Upcoming events National Multiple Sclerosis Society Greater Delaware Valley Chapter 1-800-548-4611 1 Reed Street, #200, Philadelphia, PA 19147 Chairman Brian DiDonato Vice Chairs Larry Kane Marianne Jackson
Vice President, Communications Kevin Moffitt MSConnection Editor Anne Krishnan
President Tami Caesar MS stops people from moving. The National MS Society exists to make sure it doesn’t. We do this through our home office and 50-state network of chapters by funding more MS research, providing more services to people with MS, offering more professional education and furthering more advocacy efforts than any other MS organization in the world. The Society is dedicated to achieving a world free of MS. Join the movement at nationalMSsociety.org. The National MS Society does not endorse products, services or manufacturers and assumes no liability for the use or contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published information and expert opinion, and does not constitute therapeutic recommendations or prescriptions. We recommend that all questions and information be discussed with a personal physician. ©2010 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 e-mail address where we can reach you, if necessary. Please note: we may edit your letter for length and content.
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JOIN THE MOVEMENT: nationalMSsociety.org/pae
To register for these or other events, visit calendarMS.org. or call 1-800-548-4611, option 1. Thursday, January 6
Funding a College Education Webinar (See page 12)
Tuesday, January 25
Progressive MS: An Overview Webinar Speaker: Dorothy Northrop, MSW, ACSW, National MS Society Increase your knowledge of progressive MS symptoms, symptom management, emotional issues, coping strategies, family issues and resources for when family help is not enough.
Late January
Health-Care Reform & the New Congress Pennsylvania (See page 27)
Saturday, March 12
Greater Delaware Valley Employment Conference Mt. Laurel, New Jersey (See page 17)
Make your mark during MS Awareness Week MS Awareness Week is March 14-20, 2011, and we’re looking for new ideas to raise awareness about MS – the challenges you face and the many ways you’re successful each day. Contact Anne Krishnan with your great ideas or if you’d like to be part of a brainstorming group in January. Just call 1-800-548-4611 or e-mail anne.krishnan@pae.nmss.org.
IN BRIEF
Cladribine gets mixed reception A second potential oral diseasemodifying therapy has been rejected by European regulators. The EMEA was concerned that cladribine’s benefits didn’t outweigh its risks, particularly related to cancer and weakening of the immune system.
Cladribine has been approved as “Movectro” in Russia and Australia, and the FDA has given priority review to its application in the United States. The FDA’s decision could come by the end of 2010.
Nuedexta approved for pseudobulbar affect The FDA has approved Nuedexta (Avanir Pharmaceuticals) as the first treatment for pseudobulbar affect in MS, ALS and other disorders. Clinical trials of the drug showed that it reduced the rate of inappropriate laughing and crying episodes by 47-49% compared with placebo. However, Nuedexta may cause
serious side effects including changes in heart rhythm, and is not recommended (contraindicated) for people who have certain types of heart conditions unless they have an implanted pacemaker.
Meditation soothes MS A new Swiss study reports that a form of meditation known as mindfulness could help ease depression and anxiety in people living with MS. Participants in an eight-week mindfulness meditation program reported lower levels of fatigue and depression for up to six months than those receiving standard care and had better quality of life, according to the study findings.
Oral laquinimod reduces number of active lesions seen on MRI The results of a 36-week extension study to assess the safety and effectiveness of oral laquinimod in people with relapsing-remitting MS has shown significant reductions in disease activity seen on MRI. An average 52% reduction in the number of active lesions on MRI was seen in a group of study participants who were switched from placebo to a daily oral dose of laquinimod. The most significant side effect was raised
liver enzymes, which proved reversible in all cases.
First oral MS drug approved The US Food and Drug Administration has approved fingolimod, brand name Gilenya, Novartis International AG, as the first oral disease-modifying therapy for relapsing forms of MS. In clinical trials, Gilenya reduced the frequency of MS relapses and helped slow the build-up of some of the physical problems caused by MS.
Researchers find factors that lead to faster disease progression In a study of over 5,000 people with MS, researchers pinpointed motor symptoms at onset (such as muscle stiffness or spasticity) and male gender as factors associated with a faster progression from relapsing-remitting MS to secondary-progressive MS.
Seasonal pattern seen in MS lesions Brain lesions associated with increased multiple sclerosis activity appear more often between the months of March and August, a new study shows. Researchers also say warmer temperatures and solar radiation also seem to be linked to increased activity in people living with MS.
TOLL FREE NUMBER 1 800 548 4611
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President’s message
What difference can you make? One of the Society’s key goals is to mobilize millions of people to do something about MS now. While activating Tami Caesar, the resources of President millions of people may sound like a lofty aspiration, it is achievable simply by engaging one person at a time. I have seen many examples of the power of one. However, one who stands out in particular is Stacey Asbell and her impact on Bike MS: City to Shore Ride and the National MS Society as a whole. It all started in 1999 after Tania Kincaid of Breinigsville, Pa. was diagnosed with MS. Six family members and friends, including soon-to-be team captain Stacey, got together to ride in the team’s first City to Shore Ride to raise money for the fight against MS. Eleven years later, the team regularly numbers more than 500 cyclists and has raised an astounding $1.6 million. Stacey helped Team Tania become the nation’s largest friends and family team for Bike MS. In addition to receiving numerous awards for her involvement, Stacey has represented our chapter at national conferences, mentored other team captains and volunteered at other Society events. In short, she has gone
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above and beyond in the movement to create a world free of MS. Team Tania celebrated its final ride together in 2010, but Stacey has already taken on an important new role as the volunteer leader of a task force charged with creating a new Society cycling event. She took on this responsibility because she loves making a difference and she knows increased funds are critical for meeting the ever-growing needs of local people living with MS. I doubt that Stacey had any notion of the huge effect she would have on local people living with MS when she first got involved in Bike MS in 1999. All it took was one ride and she was hooked. My question for the many people living with MS and their family and friends is this: what will get you hooked on the movement to create a world free of MS? Whether it’s volunteering your expertise in information technology, marketing or employment, or you just want to thank our event participants for their commitment to the cause, we need you. We can find a role for you that will be meaningful and make a difference. By doing so, we can continue to build this movement, one person at a time. Sincerely Tami Caesar, President
JOIN THE MOVEMENT: nationalMSsociety.org/pae
I am living with MS, and when my husband passed away recently, I was literally stuck. He was a hoarder, and I needed significant assistance cleaning out my house so that I could move freely through it again. The National MS Society has been a godsend by coordinating resources to help organize and clean out my home. Organizing Philly and Big Brother Little Brother Moving were both fantastic. They have already cleaned out two and a half truckloads of stuff, and they have just a little more to go.
Until now, I was ignorant of the services the National MS Society provides; I thought it was getting my dues and putting them toward research. I had no clue about any of these organizations out there to help me and others living with MS.
LETTERS
To the Editor:
If it weren’t for Dr. Leist’s suggestion that I contact the Society, I would still be stumbling around in my house. Thank you so much for your help. Sincerely, Jackie Fields Philadelphia
How can we help you? The Greater Delaware Valley Chapter of the Upcoming locations and dates include: National MS Society is bringing our services n LEHIGH VALLEY to where you live and work at our new Third Tuesday of each month Community Outreach Days. Throughout the Good Shepherd Rehabilitation Network coming year, our social workers and services Edwards Center staff will make regular visits to the Lehigh Valley 850 S. 5th St., Allentown, Pa. 18103 and South Jersey to help you learn more about the services we provide. n SOUTH JERSEY Third Thursday of each month Make plans to sit down one-on-one with a Location TBA member of our services staff to talk about how we can help you overcome the daily challenges If you live in another part of our region and of living with MS. From navigating the health insurance maze to employment counseling, our have suggestions of office space we can friendly and experienced staff can answer your borrow in your area for additional Community questions and connect you to resources in your Outreach Days, contact Karen Mariner at karen.mariner@pae.nmss.org or community. Plus, experienced SSDI attorneys 1-800-548-4611. will be standing by to answer your questions.
TOLL FREE NUMBER 1 800 548 4611
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Volunteers
your unique strengths and talents? Continued From PAGE 1 People are as vital as money in helping us fully meet the needs of local people living with MS, and you’re going to see and hear more about how you can contribute in 2011. In addition to one- or two-day volunteer jobs at fundraising events, we want to create longterm positions that draw on our supporters’ abilities like never before. We’ll still be in great need of volunteers to help and encourage our cyclists, walkers and runners, but we also will be looking for grantwriters, office assistants, committee members and professionals who can donate pro-bono services to our clients. We’ll also be doing more to recognize the volunteers who go above and beyond to help people living with MS and who have provided year after year of dedicated service.
A personal approach The chapter’s past approach to volunteer recruitment typically has been about filling a need we have. There is a job to be done, so we look for a volunteer to do it. An organization called Volunteer Vancouver has been the driving force behind the concept of seeing an organization through a “people lens.” Instead of always listing what we need, this approach focuses on engaging and talking to people about how they think they can help us. In that spirit, we invite you to think about what skills, background or ideas you can bring to the Society in a way that fits your life schedule and helps to further our mission. How could we build a volunteer role around 6
JOIN THE MOVEMENT: nationalMSsociety.org/pae
You may be able to contribute knowledge, skills and passion you’ve gained through your career, past jobs, clubs or hobbies. Or maybe you’ve always wanted to try something new.
Putting professional skills to work Dennis Dougherty had been engaged in furthering the mission as a volunteer on the Bike MS: City to Shore Ride Planning Team for more than a decade when he attended a seminar on advocacy. “I came away with a realization that Dennis Dougherty I had become an representing the Greater advocate, and as an Delaware Valley Chapter advocate I had so at Phil Keoghan’s Race much more that I Across America could do,” he said. “Advocacy can be as simple as providing your skills for what is needed. All you have to do is ask, and then volunteer it!” Dougherty joined the New Jersey Government Relations Committee and now helps plan and implement the Society’s advocacy agenda within the state. This spring, he also attended the Society’s Public Policy Conference in Washington, D.C. to learn more about important issues for people living with MS and share that information with elected officials. But he didn’t stop there. When he heard that the staff needed volunteers to guide the chapter’s
“Right now, I’m getting more out of this volunteer job than what the National MS Society is getting out of me. It’s fulfilling something in myself. We’re meant to help one another.”
He also identified the need for a comprehensive home safety evaluation checklist and helped develop the new HomeABLE grant program. He continues to serve as a volunteer consultant for the project, contributing his deep knowledge of the local building industry by reviewing bids and the contractors who submit them. “The ultimate goal of a world free of MS requires us all to be more than just volunteers, but to be advocates,” Dougherty said. “Sometimes advocacy is more challenging than others, but all of it is important toward reaching our goal.”
What’s in it for you? Volunteering is a perfect way to learn new skills, keep existing skills fresh and add experience to your resume. In a tight job market, it provides a valuable opportunity to show potential employers you’re committed to professional development and your community. Plus, volunteering is a great way to learn new skills that can help you make the transition into a new career. Colleen Stover of Harleysville signed up to be a community service investigator at the advice of Employment Manager Christina Forster. Stover was looking for a job, and Forster thought she could enhance her customer
Volunteers
home modification program, Dougherty, a trained architect who evaluates the accessibility of public buildings, joined a workgroup to help revise them.
service skills by following up with clients who have received help from the chapter to make sure they’re happy with the equipment, vendors and service they’ve received. “She thought it could help me get back into the swing of things,” said Stover, who hasn’t worked since her MS diagnosis in 2005. The position fit her experience and interests perfectly. “I love contact with the public, and I’m good with doing paperwork,” she said. “Just doing office work and working with people – it’s kind of connected, I think.” Although she only began volunteering as a CSI this fall, the benefits already have been immeasurable, Stover said. “Right now, I’m getting more out of this volunteer job than what the National MS Society is getting out of me,” she said. “It’s fulfilling something in myself. We’re meant to help one another.” Let us know how you can contribute to our vision of creating a world free of MS! Share your skills and talents by completing this survey http://www.surveymonkey.com/s/ GDVvolunteersurvey or giving us a call at 1-800-548-4611. TOLL FREE NUMBER 1 800 548 4611
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Volunteers
VOLUNTEER
HE L P WANTED
Check out some of the important new roles we’re developing for volunteers. You can learn more about these positions online at http:// main.nationalmssociety. org/volunteer. If you see a good match for your skills and interests, contact Kathie Cronk at kathie.cronk@pae.nmss. org or 1-800-548-4611.
n Data Entry Clerk – Event Processing: The event processors will help enter day-of donations for major fundraising events as well as other data entry needs. n Data Entry Clerk – Account Cleanup: Account cleanup volunteers will help ensure that all undeliverable mail that is received is properly processed in a timely manner, and they also will ensure that duplicate mailings are not sent out. n Reporting Analyst: This volunteer will assist in pulling reports from the chapter’s databases and manipulating and formatting the data. 8
JOIN THE MOVEMENT: nationalMSsociety.org/pae
n Events Publicist: The event publicists will have the important role of spreading awareness about the Society’s fundraising events in media throughout the region. n Community Service Investigator (CSI): These volunteers assist in identifying accurate and accessible resources for people affected by MS. n Self-Help Group Communications Assistant: This volunteer is responsible for gathering and sharing self-help group meeting information and meeting summaries from group leaders on an ongoing basis. n Development Administrative Assistant: This volunteer will assist the volunteer manager in the registration and coordination of development event volunteers and data management. n Services Administrative Assistant: This person will assist in converting our current filing system to a new, updated system, make follow-up client calls, do some computer work – data entry, online research – and assist in general administrative duties. n Grants volunteer: The grants volunteers will identify and write grants for existing services provided by the chapter, as well as grants for new services and public policy efforts. n Health insurance volunteer: The volunteers will oversee the creation and management of the HIIP website, assist clients with their health insurance appeals and research and write policy papers on health insurance-related issues.
n Self-help group leader: Reading Berks SelfHelp Group is in need of a new leader. The group meets the 3rd Monday of each month in Reading, Pa.
Volunteers
n Pro-bono counseling volunteer: Licensed, professional counselors will agree to take one client with multiple sclerosis pro bono per year.
Four honored for volunteer service Congratulations to our chapter’s 2010 inductees into the Volunteer Hall of Fame. Thomas Leist, MD, PhD, has made providing highquality, easily accessible care for people living with MS his life’s work as director of the Comprehensive MS Center at Thomas Jefferson University. As the chairman of our chapter’s Clinical Advisory Committee, he has challenged CAC members to develop “programs in a box” that can be presented by any MS professional throughout our chapter area. He also is a frequent speaker at programs for both physicians and clients.
Fred Schwartz has made a tremendous impact on the quality of life of thousands of local people living with MS, one person at a time. Over the past eight years, he has spent time as an IRC volunteer, lending library coordinator, quality assurance volunteer, selfhelp group leader and in many other roles. He provides support, reassurance and a positive attitude to everyone he encounters and is the face of the Society for many of the people we serve.
The Hon. Nicholas J. Maiale is a shining example of trustee involvement for the Greater Delaware Valley Chapter. He chairs the finance committee, co-chairs the MS Dinner of Champions and connects the chapter with the local business community. His leadership has increased our organization’s profile, won us powerful new friends and raised more than $600,000 to fund the programs, services and research we provide.
Sylvia White is a trailblazer on behalf of people of color in Philadelphia, as founder and co-leader of the first self-help group for African Americans in the Greater Delaware Valley, Kindred Spirits. In an era that didn’t recognize that African-Americans were affected by MS, Sylvia empowered her group members and validated their experiences, and she continues to lend a positive attitude to help them overcome the issues they face. TOLL FREE NUMBER 1 800 548 4611
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Get Involved
sunday
We’re building ramps, giving rides to the doctor, funding home-care aides, sponsoring self-help groups and standing up for you when your insurance company says “no.” This is what Walk MS funds in your – our – community. And this is why it’s so important for everyone affected by MS to get involved.
Pocono Raceway NSITEEW Poconos, Pa. Ridley Creek State Park Media, Pa. (5k run) Tyler State Park Newtown, Pa. Elmwood Park Zoo Norristown, Pa. Main Line NEW NEW Radnor, Pa. SITE START Lenape Park Sellersville, Pa. Moorestown High School Moorestown, N.J. Washington Lake Park Washington Township, N.J.
2011
Your journey to creating a world free of MS starts at Walk MS 2011. Be there.
GADGET CORNER:
04.17
register today! walk4MS.org 1-800-883-WALK
sunday
05.01
Coca Cola Park (Home of the Iron Pigs) Allentown, Pa. North Penn High School Lansdale, Pa. Phila. Museum of Art Philadelphia, Pa. (5k & 10k Run) Gring’s Mill Rec. Area Reading, Pa. Valley Forge Area Valley Forge, Pa. East Goshen Twp. Park West Chester, Pa. (5k run) Ocean City Board WALK Ocean City, N.J. Medford Lakes Medford Lakes, N.J. Parvin State Park Vineland, N.J. Eastern High School Voorhees, N.J.
NEW START
Symptom Tracker Software
Whether you’ve had MS for years or are still seeking a diagnosis, you’ve probably read or heard recommendations to keep track of your symptoms. Symptom Tracker Software allows you to track your symptoms on a daily basis by just pointing and clicking. Just a few more clicks will generate concise summary reports for your doctor. This is an easy way to record, store and share information about your symptoms, saving you time and allowing you to be an active participant in your diagnosis, treatment or disability claims. Visit symptomtrackersoftware.com to learn more or order your copy for $19.95. 10 JOIN THE MOVEMENT: nationalMSsociety.org/pae
The following new members have been elected to a three-year term on the Greater Delaware Valley Chapter Board of Trustees: Romona Riscoe Benson, President and CEO, African American Museum in Philadelphia Under Romona’s leadership, the once-struggling African American Museum has thrived. She has been recognized by the Philadelphia Tribune as one of the city’s most influential African-Americans and uses her influence to help raise awareness of MS in the community through her involvement with the Women Against MS movement and by speaking openly about the challenges of living with MS. The chapter honored her with the 2009 Woman of Spirit Award for her leadership in the African-American community and the MS movement. Lawrence A. Brownstein, MBA, Chief Administrative Officer, CRI Worldwide Larry Brownstein has over 25 years of management experience working with Fortune 500 health-care organizations, as well as smaller companies. He holds a BA from Northwestern University and his MBA from The Pennsylvania State University. Larry and his family have been involved with the Greater Delaware Valley Chapter for more than 10 years. His father, Gerald, has MS, and his family has a large team at Bike MS: City to Shore Ride. Larry serves on the chapter’s finance committee.
news
WELCOME NEW TRUSTEES William Coffey, Senior Manager, The Vanguard Group With a focus on technology, Bill is responsible for developing the strategic vision and direction of Vanguard’s financial advisor department. A City to Shore cyclist and team captain, he rides for his wife, who has MS. Bill is serving on the chapter marketing committee and was recently selected to serve on a national work team addressing the Society’s IT systems. David Johnston, Executive Vice President and Chief Operating Officer of Wawa As Wawa’s EVP and COO, David is responsible for the operations of 580 stores and 16,000 employees, as well as Wawa Beverage Co. Prior to his career at Wawa, David was a senior executive at Target in Minneapolis, worked for five years with McKinsey & Co. and earned an MBA from MIT Sloane School. David was one of the MS Great 8 Bike Tour riders and has raised more than $10,000 this year. He is a veteran rider of the City to Shore and PA Dutch rides and is on the volunteer committee to create a new Bike MS event.
TOLL FREE NUMBER 1 800 548 4611 11
SCHOLARSHIPS
Early scholarship recipient focuses on neurology
A
s Meaghan Henrici’s medical school classmates learn about neurologic diseases from textbooks, the Wayne, Pa. woman thinks back to her mother’s experience over the past seven years. Henrici, one of the first local recipients of a National MS Society scholarship, has watched as doctors struggled to diagnose her mother, first with MS and later with a rare but similar disorder known as Devic’s disease. “I’ve had a lot of exposure to the field of neurology early on,” said Henrici, who plans to become a neurologist. “What my mom has gone through and what my family has gone through has pinpointed my focus right now.” She said she’s lucky to be from a close-knit family, with grandparents who come over every day to care for her mom, who now uses a wheelchair full-time, has some cognitive issues and has lost sight in one eye. That kind of family support allowed Henrici to swim competitively through high school and into college, an outlet for her energy and her frustration at the deterioration of her mother’s health. Still, with two younger brothers to care for, Henrici also took on responsibilities including meal preparation, laundry and chauffeuring her siblings. “I think the three of us all matured faster and had an appreciation for things others didn’t,” she said. “The hardship helped us become who we are today.” A 2009 Lafayette College graduate, Henrici is beginning her second year at Drexel
12 JOIN THE MOVEMENT: nationalMSsociety.org/pae
University School of Medicine. She will be president of the neurology club next year and spent the summer working on neurological research, teaching health and fitness to homeless mothers and children and planning an accessibility adventure day for people with disabilities in the region. Meaghan Henrici Henrici’s mother, her health now stable, attends physical therapy twice a week at the YMCA. “She works every day to overcome it,” Henrici said. “Keeping a positive attitude is really the best thing to do.”
Scholarship resources The National MS Society is now accepting scholarship applications for the 2011-12 academic year. The deadline for applications is January 14. To learn more or apply, visit nationalMSsociety.org/ scholarships or call 1-800-344-4867. The Greater Delaware Valley Chapter also has developed a guide to help you identify scholarships, avoid scams and navigate your way through the complex financial aid process. It’s available online only at nationalMSsociety.org/pae. Plus, we’re offering an online presentation of Funding a College Education: Resources to Make the Journey a Little Less Scary. This Webinar on Thursday, January 6 will help you feel more comfortable with finding the means to pay for your child’s college education and knowing which options are right for you. Register by calling 1-800-FIGHT-MS and choosing option 1, 9 a.m. to 7 p.m., Monday to Friday, or visiting calendarMS.org.
People living with MS and other disabilities are particularly vulnerable to abuse, not only from domestic partners, but also from parents, children and caregivers.
Services
IT SHOULDN’T HURT TO BE LOVED/CARED FOR The Greater Delaware Valley Chapter has received a significant number of calls on this subject. People with physical disabilities report experiencing abuse for longer periods of time than others without disabilities, a collective difference of 3.9 years versus TYPES OF ABUSE 2.5 years. People with disabilities reported that their Physical Abuse Emotional Abuse abusers sometimes withheld wheelchairs, medications and assistance to medical visits and denied them n Physical n Belittling or transportation or assistance with personal tasks. intimidation by embarrassing one a dominating in front of others Despite what many people believe, domestic violence partner n Social isolation and abuse are not due to the abusers’ loss of control n Pushing, slapping, n Constantly over their behavior. In fact, abusive behavior and punching, insulting one’s violence are deliberate choices made by the abuser in beating, kicking intelligence order to control the victim. and other activity n Threats to tell that physically The biggest risk for personal injury in a domestic others about one’s harms abusive relationship comes at the point of separation, MS which is why most victims are reluctant to leave. Since Sexual Abuse Financial Abuse threats and violence are typically control strategies, the n One partner n Forced abuser may feel more inclined to react in extreme ways having all the intercourse to maintain power. power over n Forcing one to Emergency, shelter and counseling services are finances, perform a sexual available through organizations such as the National medication and act Organization of Women and the National Domestic support in the n Forced touching Abuse hotline, 1-800-799-SAFE. These organizations home can help you devise and implement a safe escape plan. n Limits to spending, access Leaving is not always the best – or only – solution to life necessities for each person being abused. Sometimes people such as food, with disabilities rely upon their partner or caregiver water, clothes for physical and cognitive care, or for other financial and medication reasons, including health-care coverage. Safety planning information is available through these organizations for all abuse victims, regardless of whether the victim plans to leave or remain their current situation. You can also contact Na’Tasha Sanders at the Greater Delaware Valley Chapter at 1-800-548-4611 for referrals to agencies in your area that can assist you.
TOLL FREE NUMBER 1 800 548 4611 13
HEALTH CARE
QUESTIONS ABOUT HEALTH INSURANCE By THE HEALTH-CARE REFORM IMPLEMENTATION TEAM
H
ealth-care reform is now law, so the name of the government’s official website has changed. Visit healthcare. gov (not healthreform.gov). While many regulations remain to be written, not everything you may hear about this law is accurate.
As of September 23,* all new or renewed job-based or private plans:
A section on this site allows comparison shopping for health insurance. It links to what’s available in each state – private plans, public programs and community health-care services. Prices are being posted as they are set, so users are invited to check back often for updates. If you currently have employer-based or individually-purchased insurance that works for you, you don’t need to do anything. About 50% of Americans living with MS have this kind of coverage.
n Cannot drop coverage because of high claims
The Affordable Care Act is designed to protect people from some potential insurance abuses. These changes are being called “The Patients’ Bill of Rights.”
n Cannot exclude your children under 19 because of disabilities or pre-existing conditions
n Cannot impose “lifetime” limits n Must allow your adult children to stay on your plan until age 26 *Please note that most job-based plans renew at the turn of the year, meaning that these protections kick in on January 1, 2011, for most people. If you encounter exceptions to these provisions, call us. Our staff in the Information Resource Center can help. If you currently have no insurance and have been uninsured for six months or more, call us to discuss the Pre-existing Condition Insurance Plans (PCIPs). They are starting up in every state, and no one can be refused coverage due to their health. But until the tax breaks and help that start in 2014, you may find the cost a problem. Call us anyway to explore other options.
Planning for 2011
“You can choose two out of three.”
14 JOIN THE MOVEMENT: nationalMSsociety.org/pae
As usual, people on Medicare can switch their plans between November 15 and December 31. Review your choices carefully. Government subsidies for Medicare Advantage plans are being reduced, and some of these insurers will respond by raising prices or limiting benefits. Traditional Medicare benefits are being increased, not limited.
Mammograms, colon cancer screening, vaccinations and more will be covered in full with no co-pays or deductibles.
Medicare Part D will be different The “donut hole” is still with us, but in 2011, name-brand drugs including biologicals will be offered at 50% off while the individual is in the gap. Generics may be even more steeply discounted. Check the list of covered drugs (the formulary) in any plan you
are considering. As before, drugs for MS symptom management prescribed “off label” – as many are – will not be discounted. Activists are working hard to change this.
HEALTH CARE
CHANGES?
IF YOU HAVE NO INTERNET OR NEED MORE HELP, CALL US AT 1-800-344-4867. The Health-Care Reform Implementation Team is 12 chapter and national Society staff members tasked with explaining the new law.
More resources on the Affordable Care Act Go to the source:
THE BIG PICture:
U.S. Department of Health & Human Services website for consumers
Health Reform GPS – A joint project of George Washington University’s Hirsh Health Law and Policy Program and the Robert Wood Johnson Foundation. See especially their “Reform Overview.” Healthreformgps.org.
healthcare.gov cuidadodesalud.gov cms.gov medicare.gov
Helpful timelines showing changes to come: The Kaiser Family Foundation: kff.org/healthreform/8060 .cfm. Families USA: familiesusa .org/assets/pdfs/healthreform/reform-in-the-firstyear.pdf (For details about 2010)
Consumers Union: consumerreportshealth.org AARP’s Users Guide to Health Care Reform: http://www. aarp.org/health/healthcare-reform/info-042010/a_user_s_guide_to_ health_care_reform.html The National MS Society: nationalMSsociety.org/ healthcarereform
For personal counseling: National MS Society insurance specialists: Call 1-800-344-4867 and ask for an MS Navigator. The Greater Delaware Valley Chapter’s health insurance initiative project is designed to help with concerns including how to get and keep insurance; appeal insurance company decisions; understand your benefits; and apply for and receive prescription discounts. Visit http://main. nationalmssociety.org/hiip for more information or call Christina Forster at 1-800548-4611 to get started.
TOLL FREE NUMBER 1 800 548 4611 15
Column
A LIT TLE ABOU T JEN Editor’s note: We’re pleased to welcome Jennifer Erickson as our newest columnist. This column introduces Jen and some of her background with MS. Future columns will focus on her holistic approach to living with MS through wellness.
I
have relapsing-remitting MS. I struggle with depression, fatigue, vision damage and fear about my future. I’m a mental health therapist. I try to live what I practice – health, daring and compassion. I’m a mother, a lover, a daughter, a sister, a friend, a runner, a thinker. I’m human, woman at heart and I try to give my form – whether I consider it diseased or perfect – what it needs to be lively and loving.
Jen Erickson
MS began in me when I was pregnant with my first baby in 1995 – the numb thigh probably wasn’t nerve compression from her position. Heck, she never stopped flipping around long enough to impinge on anything. Norma Raye was stillborn that year on my birthday, our umbilical cord attenuated around her neck.
Prior to the ultrasound that proclaimed her death, I was a newly married woman on a solid academic path, happily pregnant. After her birth, I was a childless mother – angry, desperate and frantic at the feel of empty arms. My grief wasn’t pretty or convenient. I treated it with sympathy cards, painting, college and running – not meds. This loss pressured my attention to suffering in a way 16 JOIN THE MOVEMENT: nationalMSsociety.org/pae
that couldn’t be sedated or diverted. My efforts to rejuvenate, to make sense of life and death, would help me with the symptoms and uncertainties of MS. In 1998, a year after my second daughter was born healthy, my body responded to the drain of breast feeding on low calories and high miles with its first measurable hint of MS. I had run a 13-mile race, then gone numb from my toes to my chest over the course of a week. Except for Lhermitte’s shock, my body felt bland, muted and buzzy. I still had motor control and body position awareness – I could walk and feel pressure – but I couldn’t discern details like pinpricks or temperature. An MRI showed a large plaque at C5 that looked like a tumor (transverse myelitis, they eventually called it) and won me a sickening amount of IV steroids and a two-day hospital stay. I remember the radiologist who told me I had MS in 2001 as well as I do the nonchalant, necktie-challenged doctor who told me my baby was dead in 1995. The radiologist was animated, whimsical: “Of course you have MS…. Plaques all over the place…. A few nice new long ones….” He didn’t notice me fall against the wall and start to slide down it. Clearly, he thought I’d already been diagnosed. I returned to life with my old depression, enriched by a deepening preoccupation with disease and death. The Internet kept me busy and anxious with cautions and theories – all of which had lots to do with norms and nothing to do with me. Time and mindfulness have helped me live with MS. Time – such a frustrating factor. I could not have been any braver or healthier, any more mature or realistic, than I was at
Mindfulness crept in soon after, such that I began to notice my ways and question them, intuit peoples’ needs and approach them, enjoy nature and explore it. With much help I find power in challenging the well-published course and treatments of MS. When I go numb I try to feel and sense clearly. When I feel unstable I walk barefoot on solid ground. With my subpar vision I run on technical trails. When my emotions overwhelm, I pray alone in the woods and I ask people for help. I try to meet the uncertainties of aging, illness and death – greet the suffering they bring – with directness, company and joyful abandon.
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age 31 when diagnosed. Daily for months, I woke up sad and went to bed afraid. But one day, my tangential worries of paralysis, organ failure, blindness, depression, fatigue, cognitive decline… they stalled. MS seemed distant, not a part of me. So I cursed it. I walked to a playground down the street. Not caring if I fell, I climbed a swingset, sat on top, and prepared for the kamikaze flight of a pennydrop. I bobbled the landing. And I walked back home feeling strong and defiant.
Build your employment toolkit at conference Phil Rumrill, the foremost authority on employment and MS, will headline the Greater Delaware Valley MS Employment Conference on Saturday, March 12 in Mt. Laurel, N.J. In addition to his extensive professional experience as director of the Center for Disability Studies at Kent State University, Rumrill’s experience with blindness gives him personal insight into living and working with a significant disability. The goal of the conference is to give people living with MS the resources they need to fill their employment skills toolkit. Additional breakout sessions will address networking, resume building, interview tips, legal rights, symptom management and maximizing your potential by knowing your skills. The conference also will include a mini job fair with prospective employers and service providers, including SSDI attorneys and representatives from state departments of vocational rehabilitation. Plus, we’ll offer a lunch panel discussion featuring professionals who will share their stories of working with MS. The conference is free, but registration is required. Sign up today by calling 1-800-FIGHT-MS (press option 1), Monday-Friday, 9 a.m. to 7 p.m. or visiting calendarMS.org.
Jen Erickson at Mud Run Philly 2010 TOLL FREE NUMBER 1 800 548 4611 17
FUNDRAISING
BUSINESSMAN RAISES $50K IN RECORD MS LEADERSHIP CAMPAIGN
M
ike Spaeder of Mike Spaeder Landscaping knows something about building a venture from the ground up.
Pat Croce and Mike Spaeder at the MS Leadership Class awards ceremony
Over the past two decades, he has turned his teenage lawn-cutting business into one of the region’s top commercial landscape construction companies.
And this summer, Spaeder raised a tremendous $50,000 to become the highest fundraiser ever for the MS Leadership Class. But Spaeder’s involvement stretches even further than his record-breaking campaign; he played an important role in getting Mud Run Philly off the ground, and he is supporting his family members as they make their own marks against MS. Spaeder’s inspiration is his wife, Chris, who was diagnosed with multiple sclerosis in 1996. “I figure I’ve been very fortunate in my life, and I’m in a position where I can start donating time and energy to a cause – why not have it be a cause that affects my life every day?” he said. Chris Spaeder was diagnosed with MS after a bout with optic neuritis three months before the Spaeders’ wedding. When their daughter,
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Allison, was born a few years later, they gave her the middle name Hope to signify their hope that Chris always stayed healthy. Allison, 12, has shown that volunteer leadership runs in the family. This year, she asked to rename their family’s Walk MS team “Team Hope” and be the team captain. With 47 walkers, including much of the Spaeders’ extended family, Team Hope was the largest at Ridley Creek State Park this year and raised nearly $5,000. For his part, Spaeder kicked off his MS Leadership campaign with a fundraising event at Barnaby’s in Havertown, charging a $20 cover for food, auctions, a DJ and a cash bar. More than 200 friends, family members and professional contacts showed up. “It’s just overwhelming for me that so many people think that much of me, and especially my wife,” Spaeder said. “I was surprised by the generosity of people, even in these tough times.” He followed up with major corporate sponsors and an e-mail campaign to larger potential contributors. Spaeder’s extensive and local professional network also was one of the keys to the success of the inaugural Mud Run Philly in Newtown Square, Pa. in June. He worked his contacts to acquire a location for the event and get the construction equipment donated to build the run’s 25 obstacles. Mud Run Philly raised nearly $200,000 and attracted 1,000 runners in 2010 and will be even bigger in 2011. “We’re already planning and plotting for next year,” he said.
Throughout the year, dedicated runners raise funds for local people living with MS while participating in the events they love through “I Run to Stop MS.” This fundraising campaign, spearheaded by avid runner and triathlete Paul Goldstone, gives athletes the flexibility to raise money for MS at events of their choice throughout the year. In 2010, 57 runners participated in local races such as the Broad Street Run, the ING Rock ‘n’ Roll Philadelphia Half Marathon and the Philadelphia Marathon. They also traveled the country, racing in marathons in Charlottesville, Boston, New Jersey, San Diego and Chicago. Among the members of the Karma Striders team is Howard Walker of Newtown Square, Pa. He was diagnosed with MS in November 2009, shortly after the birth of his daughter, when he found he could no longer control his right foot.
Yet Walker and his sister Mary ran in eight races this year, and he has raised nearly $5,000 to fund research into the questions about MS that currently cannot be answered. “I refuse to sit around and feel sorry for myself,” he said. “I will be active and fight for a cure, maybe not for me but for my daughter’s generation. As long as I am physically able, I will run for a cure.”
FUNDRAISING
RUNNERS STOP MS, ONE STRIDE AT A TIME
Howard Walker with his wife and daughter, Helen and Sarah
“I will not run for myself,” he continued. “I will run for the people who have MS who are unable to walk or run. I will run for the people who have MS who are unable to afford their medication. I will run for everyone who has heard the words ‘You have MS.’” You can make a donation to Walker’s campaign at http://main.nationalmssociety. org/goto/howardwalker or recruit your friends and family to run with him on the Karma Striders team next year.
Runners also can create teams of their own. Visit http://main.nationalmssociety.org/irun to learn more or get involved in 2011. Karma Striders team at the Philadelphia Marathon
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FUNDRAISING
Fabulous four take on Great 8 tour Four Greater Delaware Valley cyclists were among ten who took the challenge of the Great 8 Foundation’s “8 States in 8 Days Tour” this summer. Ian Harris, David Johnston, Betsy Wolford and Lorinda Yorlano pedaled more than 500 miles together and raised $57,000 toward the group’s combined $100,000 goal. “To me, there’s nothing better than doing something you love to do that also helps a worthy endeavor,” said Wolford, who lives in Malvern, Pa. “One of the things I’ve learned along the way is that we all have a responsibility to use our gifts to satisfy the needs of the world.”
“Biking in an MS event is no longer just about the thrill of riding and keeping track of the mileage, the time, etc. It’s now about raising awareness of the cause we are all trying to fight.”
The cyclists started in Washington, D.C. and rode through Maryland, Delaware, Pennsylvania, New Jersey, New York, Connecticut and Rhode Island to the finish in Boston, Massachusetts. Greater Delaware Valley Chapter Trustee Ian Harris was intrigued by the “epic” distance of the ride and
20 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Local cyclists among those participating in the Great 8 Foundation’s “8 States in 8 days Tour” inspired by his daughter, who’s living with MS. He wasn’t disappointed, calling the ride both physically and emotionally challenging. “I came away from the ride really charged up emotionally, really accomplished because we had done the ride and feeling really good because I met a group of people who were all really aligned with what we were doing,” said Harris, who lives in Penn Valley, Pa. Harris was the ride’s top fundraiser, raising more than $25,000. But he also was proud to raise awareness of MS on the journey. He and the other cyclists were moved throughout the ride by the people who approached them along the route to share their stories of living with MS. They also gained supporters in unexpected ways. One of the ride’s biggest fundraising successes was a $9,000 donation from Passion Vines Wine & Spirit Company and owner
Wolford had no direct experience with MS before beginning the ride, but she said the connections she made and the stories she heard have changed her outlook on Bike MS, the Society and people living with this disease.
“Biking in an MS event is no longer just about the thrill of riding and keeping track of the mileage, the time, etc.,” she said. “It’s now about raising awareness of the cause we are all trying to fight. Those with MS are no longer on the periphery of my world.”
FUNDRAISING
Michael Bray, whose mother has MS. After reading an article about Yorlano’s plans in the Atlantic City Press, Bray donated the proceeds from a wine dinner fundraiser to her campaign for the Great 8 ride.
Community fundraising all-stars Many thanks to all of our volunteer fundraisers who are helping create a world free of MS. The 20th annual Bertie’s Belt Sander Race raised $6,136.65 while also raising awareness with a news story on WFMZ. The spirited event at Bertie’s Inn in Exeter Township Participants in the 20th attracted hundreds annual Bertie’s Belt of racers as team Sander Race members sat on belt sanders and raced the length of a 50-foot track. Over the past two decades, this event has raised more than $250,000 to create a world free of MS! The Pleasant Valley School District raised $1,454 through a “Staff Denim Day” in March. The fundraiser, facilitated by the Pleasant
Valley Chapter of the Future Business Leaders of America and advisor Teresa Galicki, asked each staff member who wanted to wear denim to school on that day to donate $3 to the National MS Society. Leslie Cardiello raised $273 through her book signing/ reception/MS benefit to launch her new book, “Your Hair And You with Leslie Lou.” In addition to donating 20% of book sales for the day, Cardiello raffled off various prizes in her event at Kids Cuts in West Reading, Pa. TOLL FREE NUMBER 1 800 548 4611 21
TOP 5
tips for caregivers As a family caregiver, you know how much you do to take care of your loved one. Thoughts about what they need now or next are never far from your mind. But what about what you need? Caregivers are good at taking care of others and notoriously poor at taking care of themselves. These tips provide some quick, easy things you can do to maintain your own health and well-being. Remember, you have to take care of yourself so that you can take care of others.
1. Breathe. Take a deep breath. When you breathe in, feel your waist and ribs expand with the breath. Breathe in as fully and deeply as you can, hold it for a second or two, and then blow out like you are blowing through a straw. To create full relaxation, “square breathe.” Breathe in slowly to a count of 4 (or 5 or 6, depending on your comfort), hold it for the same count, and then slowly exhale for two sets of the same count. The inhale is the first side of the square, the hold is the second side, and the exhale makes up the third and fourth sides. If your brain will not get quiet, square breathe while counting to yourself and visualizing the square as it forms. It distracts your mind and lets you relax. Regular deep breaths, without the extended hold and release, can lead to hyperventilation; so just breathe two to three breaths normally in between the sets.
2. Sleep. There is a lot of attention being paid lately to the effects of sleep deprivation. Lack of sleep 22 JOIN THE MOVEMENT: nationalMSsociety.org/pae
disrupts the hormone cycles your body needs in order to function properly and prevents you from breaking down cortisol, the stress hormone. It leads to irritability, poor concentration and focus and poor judgment. Fortunately, your body will reset itself with two good nights of sleep. Your situation may not allow you to sleep more than a few hours at a time. Periodically, ask a friend or family member to stay with your loved one or use respite services so that you can get a good night’s sleep.
3. Eat well. One result of too little sleep is that we often eat more, and more of the wrong things, as a way to compensate. You may be eating to relieve stress, to “reward” yourself for the hard job of caregiving. Or you may just be eating the wrong things because that is what is quick and easy as you try to get through your day. All of these are self-defeating. We wind up gaining weight and having less energy. There is no one-size-fits-all diet, but there are some good basic guidelines. Keep your meals and snacks low-fat, keep your carbohydrates “light” (think fruits, green salads and vegetables instead of starches) and be sure to eat some protein, but probably not more
4. Exercise. Taking part in 20-30 minutes of aerobic activity releases the endorphins in your brain so that you feel better, think better and have better stress tolerance. And the endorphins last for 48 hours. So go up and down the stairs, power walk around the block, put on music and dance, get an exercise DVD. To quote the commercials, “Just do it.”
5. Find joy and stay connected. Do something that is just for you, something that makes you laugh or brings you pleasure. Our days get filled too quickly with things we have to do. You need a “want to” that keeps you in touch with who you are. Remember, too, to stay connected with friends. They will help you remember who you are, which is more than just a caregiver. And real friends will support you through the hard times. Take care of yourself. You are worth it. Elissa Lewin is founder and president of Nancy’s House respite for family caregivers, which offers regular getaways for MS caregivers. Learn more at nancys-house.org or by contacting Malika Hook at 1-800-548-4611 or malika.hook@pae.nmss.org.
Grant provides food, shelter over holidays
awareness
than 4-6 ounces, per meal. For example, an apple, some low-fat cheddar cheese and a handful of almonds is a great snack. You will feel better and think more clearly with this approach. Think about cooking two or three large healthful meals on the weekend that you can then use throughout the week for a quick grab.
Many families affected by MS will gather together in their warm homes this month for a holiday meal. But others in our community struggle to afford food and shelter as they face the financial uncertainties an MS diagnosis brings. The W.W. Smith Charitable Trust is making the holidays brighter for these people with a generous $20,000 grant for emergency food and shelter assistance. This grant, designated for families living in Philadelphia, Bucks, Chester, Delaware and Montgomery counties and the city of Camden, allows the Greater Delaware Valley Chapter to broaden our reach and increase our emergency financial assistance by nearly two-thirds this year. As the economy has worsened, the chapter has seen a dramatic increase in the number of families in crisis. In 2009, we provided $8,000 to families in need of food. During the first eight months of 2010, we had already disbursed $12,000. Similar statistics exist for our other service areas, as well. The Greater Delaware Valley Chapter is grateful to the W.W. Smith Charitable Trust for its support of children, adults and the elderly who are affected by MS in the region. To learn more about the chapter’s emergency financial assistance program, please call us at 1-800-548-4611. TOLL FREE NUMBER 1 800 548 4611 23
ADVOCACY
A
r i n a R w e e e Y v i y c a c o v d
This year has been an active and successful one for MS advocacy at the state and federal levels. From adult protective services to the Americans with Disabilities Act, our MS activists have shown that making their voices heard really can make a difference.
Pennsylvania: Adult Protective Services: Gov. Ed Rendell signed Senate Bill 699 into law on Thursday, October 7, establishing the Adult Protective Services Act. Under this bill, the Department of Public Welfare is charged with administering an adult protective services program to protect abused, neglected or abandoned adults between the ages of 18 and 59 who have a physical or mental impairment that substantially limits major life activities. The bill also requires employees and administrators of facilities where adults covered under the act receive services to report suspected abuse. A tactical decision was made not to ask for funding for the bill in this year’s budget cycle. While the economy is difficult, advocates and officials can work together on creating the regulations for the program. When the state’s financial picture starts to brighten, we hope DPW will be in a good position to start funding and implementing the bill. Lifespan Respite Act: The National MS Society worked with the Pennsylvania Lifespan Respite Coalition and the Department of Aging to put 24 JOIN THE MOVEMENT: nationalMSsociety.org/pae
together a grant to help advance respite services in Pennsylvania.
Caregivers will now be able to call or visit a website to find respite services for their loved one. Respite services allow care to be arranged for the purpose of giving the caregiver a break from his or her caregiving role.
New Jersey: MS Task Force: In August, Sen. Fred Madden introduced the New Jersey MS Task Force (S2212) to identify and address the unmet needs of people with MS and develop ways to enhance their quality of life. The task force also is charged with developing strategies to provide people with MS greater access to the available therapeutic options. This bill would never have come to fruition if MS activists hadn’t been willing to talk with Sen. Madden at Walk MS this spring. Sheryl Casey, captain of “Casey and the Sunshine Clan” at Washington Lake Park in Washington Twp., inspired him to introduce the legislation. N.J. Division of Vocational Rehabilitation Services: Employment Services Manager Christina Forster and her counterparts at the N.J. Metro Chapter have provided in-service training at nearly every DVR location in New Jersey over the past year. Through advocacy, Forster and her colleagues hope to make DVR more accessible to people with disabilities in New Jersey. Their new contacts in offices throughout the area are now helping people with MS move forward in their job searches. Personal Assistant Services Program: This program, approved in November 2009, was put on hold while new Gov. Chris Christie’s staff reviewed it. The program, which gives recipients
Walk MS: New Jersey legislators attended every walk site in South Jersey, thanks to the diligent efforts of the N.J. Government Relations Committee.
2010
Region: High-risk insurance pools: Both Pennsylvania and New Jersey launched their high-risk insurance pools in August for people with preexisting conditions who have been without health coverage for at least six months. These temporary plans offer transitional insurance coverage until the broader coverage provisions of federal health insurance reform come to fruition in January 2014. MS Caucus: All South Jersey U.S. representatives are now on the Congressional MS Caucus, thanks to Pamela Trosino’s relentless contact with Congressman John Adler’s staff. Additionally, Pa. Sen. Bob Casey will take on the chairmanship of the Senate MS Caucus next year. ADA Anniversary: The chapter celebrated the passage of the Americans with Disabilities act by inviting LuAnn Cahn, a reporter at NBC10, to spend the day in a wheelchair. Volunteer Fred Schwartz lent LuAnn his chair, and she tried to navigate her building and the busy intersection just outside at Monument Road and City Avenue. She aired a story about her experience and wrote about it on her blog, “One Year of Firsts.”
Federal: National Neurological Diseases Surveillance System Act: In September, the U.S. House passed legislation that would establish a national data surveillance system to track and collect data on the epidemiology, incidence, prevalence and other factors of neurological diseases, including MS and Parkinson’s. Next stop: the U.S. Senate.
Advocacy
of PASP funds more freedom to spend the money as they see fit, now seems to be moving forward.
Adult Day Achievement Center Enhancement Act: This act, proposed in September, authorizes a total of $28 million over a period of five years to expand and enhance adult day achievement center programs for people living with MS and similar chronic conditions. For people living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction and stimulating activities that are appropriate for a younger population with disabilities. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day. Affordable Access to Prescription Medications Act: Discussion continues on this bill, which was introduced to give some financial relief for people living with MS. This legislation would cap monthly prescription drug costs, allow exemptions for fourth-tier specialty drugs, require Medicare to study the impact of drug cost-sharing and potentially lower co-payments for up to 10% of Americans with the highest prescription costs. TOLL FREE NUMBER 1 800 548 4611 25
ADVOCACY
MEET YOUR LEGISLATOR U.S. Senator Bob Casey, Pennsylvania What are your legislative interests and priorities regarding MS? The National Neurological Diseases Surveillance System Act passed the House on Sept. 29, but we’re still working to get it passed in the Senate. It establishes a national data surveillance system to track and collect data on the epidemiology and incidence and prevalence and other factors of diseases, including MS and Parkinson’s. I think that’s a significant bill that will still take some time to pass. I know that Sen. Brown circulated a letter that I signed on to which provides funding for the MS research program under the Congressionally Directed Medical Research Program at the Department of Defense, which has become a vehicle for diseases to be studied and advancements made by way of work and research that’s done at the Department of Defense. Obviously there’s more to do, especially when legislators, but also when advocates, make it a priority to make sure that we’re focused on all aspects of this disease – prevention, treatment, alleviation of the problem and cures for multiple sclerosis. The numbers are extraordinarily high, almost a half a million
26 JOIN THE MOVEMENT: nationalMSsociety.org/pae
in the country and more than 20,000 in Pennsylvania. Why have MS and disability issues been important priorities for you? I grew up in a region and in a family where diseases and conditions like those that we try to place a priority on were a source of real focus for people. I was lucky to have parents who said to us in more ways than one, “If you have the chance to be helpful and to be supportive of strategies to alleviate suffering or cure disease, you ought to do everything you can.” Do you have a personal connection to MS? Not in our family, I but certainly have neighbors and people that I’ve known over the years who have had to fight very hard just to survive and live every day with MS. Often when you see people who are overcoming those obstacles, it does create a real source of inspiration and to a large extent obligation that you feel as a citizen and even more so as a public official. Why is it important for people with MS to speak up about issues that are important to them? Because they’re the ultimate witness and they can articulate and advocate better than anyone. When you have someone who comes in before you and says, “Please help us build
What’s the best way for constituents to work with you? Some folks still write letters and make phone calls, but increasingly you have people that are contacting us by way of e-mail or going to our website or using other new media to make sure that their voice is heard. Of course, some of that involves personal visits where people can come to Washington and see us there, or back in Pennsylvania when we’re on the ground to be able to visit communities or visit with families who want to make sure we understand what their perspective is. I always tell people that they should never be reluctant, because this is my job and this is the job of my staff, as well. This isn’t something that’s extra. When you’re a legislator, you have an obligation to represent all the people and fight for them on issues that are of concern to them. I think sometimes people feel reluctant and they think that because we have a busy job, they shouldn’t be bringing their concerns to us. They should not ever feel that. They should feel not just welcome, but more than welcome, to bring any issue to us, no matter if it affects only one person, or in this case with MS in Pennsylvania, more than 20,000.
Hear more of our interview with Sen. Casey at pae.podbean.com.
Advocacy
this program or please help us with this appropriation or this strategy,” and they can speak from personal experience either as a family member or someone who has had to live with, in this case, MS, it gives a special kind of urgency and authenticity to the issue that you can’t pick up by reading about it or learning about it second- or third-hand. It provides a reality that you sometimes don’t get with a number of issues.
BREAKING NEWS: In 2011, Sen. Casey will become the chair of the Senate MS Caucus. “I consider it a real honor and a privilege to be able to do it,” he said. “It’s all the more urgent now when we have some great opportunities with changes in the health-care system and tremendous advances in technology and understanding more and more about diseases and conditions that afflict so many people. We’re looking forward to it.” New Program: Health-Care Reform and the New Congress Find out what the November election results will mean for health-care reform and other important issues for people living with MS at this timely workshop. Leaders in the Society’s advocacy and health-care initiatives will engage in a lively panel discussion about the latest news from Washington and answer your questions about upcoming issues to watch. This event will be held in late January in Pennsylvania. Watch your e-mail for more details.
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FACE OF MS
Face of MS: Deanna Meyer Deanna Meyer of Shillington doesn’t remember a time when she didn’t want to illustrate children’s books. She graduated from the Pennsylvania College of Art & Design shortly after her MS diagnosis, and her dream recently became a reality with the release of “Buffalo on the Ridge,” a book for elementary school children chronicling the adventures of Bo the buffalo and Pete the prairie dog. She hopes to continue her career freelancing for book publishers while raising her first child, Kathryn Evelyn, due in January. Deanna Meyer
Initially, as I am sure it is for most people, it was devastating to find out this news. I was just shy of my twenty-second birthday and a few months from graduating with a bachelor’s degree. This was supposed to be the best time of my life.
After college, it was quite difficult for me to deal with life with MS. I had many more attacks while taking some of the disease modifying drugs. I missed a lot of work time and lost several jobs. Finally, after a year-long battle with a lawyer, I was able to get on Social Security disability, which helped with my temporary joblessness.
I went through a period of depression, but there just wasn’t time for that. I was told by my college that I did not have to finish my projects since I was so close to the end of the year and I could still graduate with my class. Although I appreciated the empathy of my school, I did not want to miss it. So, even though I had several rounds of IV steroids before the semester was out, I finished my projects in time to be a part of the senior show with my class.
After several years of research and hard work, I have found a place where I can be moderately ‘comfortable’ having MS in my life. After a severe bout with toxic shock from a disease-modifying drug, I quit all medication and have chosen a holistic approach. As for my daily life now with MS vs. my life at diagnosis, it is worlds apart. I feel empowered, I feel like I own my body. There are times where I can actually forget that I have MS at all. That is the greatest feeling.
How does MS affect you in your daily life?
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The book was a two-year process in which time I was also substitute teaching as well as trying to get us settled in our new home. One major issue for me is always fatigue. I tire more easily than non-MS folks and it is frustrating because I hate to be still and I am very hard on myself. I wrote, illustrated and did the entire layout, typeset and all for this book, so it was a lot to handle. Not to mention I had no experience with how to do it, and all aspects of book design were new to me. I was constantly reminded by my wonderful family to take it easy and rest when they saw me fading.
What wisdom have you gained through this process that you will share with your child? I want to teach her that all things in life are purposeful, even if we don’t see where they fit in at the time. Even MS is purposeful for me, for without it, perhaps I would not have tried so hard to pursue my dream. I have never been one to be told that I cannot; MS has made me even more of a fighter. I will make sure that she is also a fighter, hopefully not with MS, but we all have something in our lives. I will try to give her the knowledge that anything you want in life is attainable. If you don’t believe that, it will certainly never happen.
FACE OF MS
What kinds of challenges did you have to overcome when you were writing your book?
Also, this past March, I had a very unexpected bout with optic neuritis in my right eye. I temporarily lost some vision and a certain amount of color field perception. This was extremely scary for the obvious reasons, but also because I had been doing so well with my holistic treatment. My vision returned and I drew again a few weeks later. I have very strong spiritual faith and I have strong family support. How do you feel and what do you think when you hold your book in your hands? I think a certain amount of this is still not real to me yet. I am also an extreme overachiever and always think, “Well, this is good, but it could be better...what is next?” I do feel proud that I finished such a large, long undertaking without giving up. Perhaps it is that I don’t really consider it a major success story but just part of the beginning of me doing what I have always wanted to do for a living. I am finally at the place where I wanted to be when the diagnosis occurred. I just lost a few years in between, but gained a lot of knowledge in the meantime.
“Buffalo on the Ridge,”written and illustrated by Deanna Meyer TOLL FREE NUMBER 1 800 548 4611 29
Fundraising
WORKPLACE GIVING: an easy way to fight MS Workplace giving programs provide an easy way for you to make your contributions to help support the fight against multiple sclerosis. The National Multiple Sclerosis Society partners with Community Health Charities in both the public and private sector. You will find our listing under the Community Health Charities Federation. If you don’t find us, ask your employer to add our name. Public Sector Federal employees can support the National Multiple Sclerosis Society through the Combined Federal Campaign by selecting the designated code #94068 in Pennsylvania or #11409 in New Jersey under the Community Health Charities Federation. Other public sector employees can designate the National MS Society through the State Employees Combined Appeal (SECA) #20000018, and the City of Philadelphia Employees Combined Campaign #14-0024, as well as other community campaigns. Check your local listings or call the National MS Society for assistance.
Private Sector Your company may have an individual corporate gift program or participate through the Community Health Charities Federation or United Way.
UNITED WAY CAMPAIGN Individuals can choose to designate their payroll deductions to the National MS Society through the Donor Choice Program. Simply ask your United Way coordinator for a donor designation form. The Greater Delaware Valley Chapter's designation for the United Way of Southeastern PA is 00243. For all other United Way agencies, please consult the organization's listing or contact our chapter directly.
COMMUNITY HEALTH CHARITIES Payroll deductions allow you to give to the National MS Society through Community Health Charities. Consult your organization's listing in order to participate.
Thank you for thinking of the National MS Society when you contribute to your annual workplace campaign. 30 JOIN THE MOVEMENT: nationalMSsociety.org/pae
Jazzy Pronto M60 electric power chair: Couple years old but barely used. Needs battery, comes with charging cables/ cords. Blue frame. Asking $500. Located in Horsham, Pa. Call Jeri at 215-892-8837. Stand Aid: Standing frame w/joy stick and battery powered lift. It can be used for transferring, toileting and passive standing. Current price of new machine is over $9,000. Asking $4,000 OBO. Located in Voorhees, N.J. Contact Shirley at 856-346-8643. Flexaciser: Provides fitness for the mobility challenged. Allows wheelchair users to roll up to it and exercise their arms and legs. Electrically operated. Asking $700 OBO. Located in Voorhees, N.J. Contact Shirley at 856-346-8643. Transfer boards: Made of wood, marble and plastic. Various lengths. Asking $25 each OBO. Located in Voorhees, N.J. Contact Shirley at 856-346-8643. Beasley Boards: One longer than the other. Especially good for transfers from wheelchair to car and vice versa. Asking $175 each OBO. Located in Voorhees, N.J. Contact Shirley at 856-346-8643. Pride Sidekick electric scooter: Used, in good condition. Will need a battery and probably a battery charger. FREE. Located in Havertown, Pa. Call Peg at 610-446-0104. Hospital bed: Used, works great. Manual lift, but back adjuster is electronic. Has side handles. FREE. Located in Northeast Philadelphia. Call Ronnie at 215-375-2107.
Two walkers: Used, in great condition. One with wheels, one without. FREE. Located in Northeast Philadelphia. Call Ronnie at 215375-2107.
CLASSIFIEDS
Classifieds
Three Commodes: Used, cleaned. One for use next to your bed, one for use in tub/ shower, one goes over toilet seat with arms for lifting. FREE. Located in Northeast Philadelphia. Call Ronnie at 215-375-2107. Motorized stair lift: Excellent condition. Has seatbelts, comfortable seat with armrests, swivel levers. Folds to make space at top or bottom of steps. Weight rated at 350 pounds. Rack & pinion suspension. Foldable foot rests. Asking $1,000, negotiable. Located in Bucks County, Pa. area. Call Bonnie at 215-321-1536. Invacare electric scooter: Barely used, like-new condition. Includes manual, working battery and charger. About 4-5 old. Asking $600 or best offer. Located in Beverly, N.J. Call John at 609-835-4223. Motorized wheelchair: Used, about three to four years old. Has a motor on each wheel. One motor is not working. Otherwise in great condition. FREE. Located in Bethlehem, Pa. Call Martin at 610-570-2634. Hoyer lift: Barely used, in like-new condition. Asking $1,000. Located in Center City Philadelphia. Call Nadine at 215-9852040.
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R EGI S TE R TO D AY AT MoveforMS.org MS Employment Conference
Mud Run Philly 2011
Walk MS 2011
Bike MS: City to Shore Ride 2011
June 11 & 12
March 12
April 17 & May 1
September 24 & 25
Women Against MS Luncheon 2011
Challenge Walk MS 2011
MS Leadership Class 2011
Individual Talents
May 3
Summer and fall
October 22-23
Share your professional skills and talents with our chapter and local people with MS.