MS Connection 2013 Issue 1
Winter 2013 Issue of MS Connection
WINTER 2013 M O V I N G T O W A R D A W O R L D F R EGREATER E O F MDELAWARE S VALLEY CHAPTER MSCONNECTION NEWSLETTER Volume 3 • Issue 3 All America Chapter September is Great Basin Sierra Event Month! O Volunteers Needed For Local Event! ur annual Bike MS event is approaching! This is an amazing weekend in Tahoe spent with some pretty amazing athletes. Our cyclists will ride the distance around Lake Tahoe on Saturday, September 13, and will ride through Truckee and up Donner Pass on Sunday, September 14. This year also marks our very first mountain bike course for all those cyclists that prefer mountain to road. INSIDE THIS ISSUE: This is not an easy weekend for the cyclists. They will be testing their bodies and minds for one specific reason—to find a cure for MS. It is always amazing to hear the stories of these athletes and to find out why they push themselves to their ultimate limits. Even you’re the cost of heating and Some ride for loved onesif that battlerenting, with multiple sclerosis on a daily basis, some ride lighting the home can strain your resources; they were 38%because of seniors report that they have trouble a part of a team and covering their housing costs. had so much fun. They keep coming back. Also, there For low-income seniors, there are programs are some cyclists to help both energy costs and repairs. that with ride because A good to start is your neighborhood theyplace have multiple sclerosis. They ride Agency (ECA) office. Energy Coordinating because it is their ECAway hasof15 Neighborhood Energy Centers fighting (NEC) in senior centers, community and located proving their independence from development corporations and other the disease and what it brings. community organizations. To find one near you,ride callfor215-988-0929. New Jersey residents While all these cyclists different reasons, they all need of for a list of resources. turnthetosupport page 17 those they are riding for. This year, we are asking any person living with multiple counselors at each NEC can help sclerosis to join us Trained at Northstar-at-Tahoe KEEPING YOUR HOME SAFE AND WARM DURING WINTER find, determine your eligibility, and apply CONTINUED ON PG 2 for resources including LIHEAP, emergency oil grants, bill payment assistance and weatherization assistance. They can help prevent utility emergencies through budget By Linda L. Riley, Philadelphia Corporation for Aging counseling, payment plans and intake for conservation and home repair programs. More than 75% of local residents age 60+ own Many of the NECs perform intake for the their homes. If you are one of those senior Utility Emergency Services Fund (UESF), homeowners, challenges you Great Basin News:you 1-2 know theLiving With MS: 5-7 Ways to Give: 10 face maintaining the heater, roof 8and other whichBasin helps when a shut-off notice has been NewlyinDiagnosed: 3 Research: Great News: 11-12 1 800 344 News:parts 4 Moneymay Matters: 9 TOLL vital of the property which be as old FREE NUMBER received for 4867 non-payment of gas, electric as you – or older. and water bills. The maximum UESF INSIDE 07 THIS ISSUE 08 19 CHAPTER MEET OUR MS WELCOMES VOLUNTEER AWARENESS NEW TRUSTEES HALL OF FAME WEEK INDUCTEES CONTINUED ON PAGE 6 26 FACE OF MS: MARIE KANE 02 NATIONAL MULTIPLE SCLEROSIS SOCIETY GREATER DELAWARE VALLEY CHAPTER 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611 CHAIR: Marianne Jackson VICE CHAIRS: Valli Baldassano, Larry Kane PRESIDENT: Tami Caesar VICE PRESIDENT, CLIENT SERVICES, MARKETING & OPERATIONS: Kevin Moffitt EDITOR: Yarissa Reyes ÂŠ2013 National Multiple Sclerosis Society, Greater Delaware Valley Chapter Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescription. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because the are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned. MSConnection welcomes letters to the editor. Send letters to firstname.lastname@example.org or the address above. Include your name and a phone number or email where we can reach you, if necessary. NOTE: We may edit your letter for length and content. MSCONNECTION: WINTER 2013 LOCAL EVENTS TO REGISTER FOR THESE OR OTHER EVENTS, VISIT CALENDARMS.ORG. February 13 Deciding How to Plan Your Job Search teleconference February 27 Should I Work? Work from Home Options for People on Social Security Disability teleconference March 11-17 MS Awareness Week March 13 The Impact of Health Insurance on Career Decisions teleconference March 27 How to Talk about MS to Your Employer teleconference April 21 Walk MS May 3 Women Against MS Luncheon May 4 & 5 Walk MS June 8 & 9 MuckFest MS September 28 & 29 Bike MS: City to Shore Ride CONNECT WITH US ONLINE: nationalMSsociety.org/pae n email@example.com f Like us: facebook.com/greaterdelMS Follow us: twitter.com/greaterdelMS You Tube Watch us: youtube.com/nmsspae Pin us: pinterest.com/greaterdelvalMS NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG NEWS BRIEFS HIGH LEVELS OF VITAMIN D AMONG PREGNANT WOMEN ARE ASSOCIATED WITH REDUCED RISK OF DEVELOPING MS LATER Previous studies suggest that the level of vitamin D in a person’s blood may influence the risk of developing MS. In a newly published study, Jonatan Salzer, MD, and colleagues at Umeå University in Sweden confirmed that women who had higher levels of vitamin D during the first trimester of pregnancy had a lower risk of later developing MS than women with lower levels, while the vitamin D levels during early pregnancy did not impact their children’s chances of developing MS later on. Additional studies of vitamin D in MS are ongoing. The study was published in the November 20, 2012 issue of Neurology. NEW EXPERIMENTAL STRATEGY TO TURN OFF IMMUNE ATTACKS IN MS USES “NANOPARTICLES” Researchers funded by the National Institutes of Health have developed an innovative strategy for selectively inhibiting the immune attack in MS. Drs. Daniel R Getts, Aaron J Martin, and Stephen D Miller (Northwestern University, Chicago) reported their results in Nature Biotechnology (advance online publication, November 18, 2012). When an immune cell dies, it releases chemicals that attract specific cells of the immune system called macrophages, which ingest the dying cell and deliver it to the spleen. Tiny portions of proteins from the dying cell are used to induce tolerance; this is a natural mechanism of the immune system to induce tolerance that somehow fails in MS. This team has developed ‘nanoparticles’ that can do the work of these proteins. Administered to mice with the MS-like disease EAE, the strategy reduced the attack on the brain and spinal cord. They are planning phase I clinical trials using this new technology. MALE SEX HORMONE TESTOSTERONE SHOWS NERVE-PROTECTING CAPABILITIES IN MICE WITH MS-LIKE DISEASE Researchers funded by the National MS Society have shown that the male sex hormone testosterone prevented or restored impairments in nerve impulse transmission in mice with EAE, an MS-like disease. The improvements specifically occurred in an area of the brain associated with cognitive function, lending evidence to the potential for the future use of sex hormones to treat this MS symptom. This team is currently conducting clinical trials to determine whether estriol (another sex 03 hormone, added on to standard therapies) improves disease activity and cognition in women with MS. Rhonda Voskuhl, MD (University of California, Los Angeles) and colleagues reported their findings in The Journal of Neuroscience (2012;32:12312). RESULTS PUBLISHED OF SUCCESSFUL PHASE III TRIALS OF INTRAVENOUS ALEMTUZUMAB FOR RELAPSING MS Published results of two large, phase III clinical trials confirm the ability of alemtuzumab (Genzyme, a Sanofi company) to significantly reduce relapse rates over two years over standard subcutaneous dosing of Rebif® (interferon beta-1a, EMD Serono Inc. and Pfizer). One of the studies also suggests that alemtuzumab may significantly reduce worsening of disability. The results were previously reported at medical meetings, and lead authors Alasdair Coles, FRCP (University of Cambridge) and Jeffrey Cohen, MD (Cleveland Clinic) and colleagues have now published complete results of CARE-MS I and CARE-MS II in The Lancet (online November 1, 2012). Data were submitted to the U.S. Food and Drug Administration in an application for marketing approval. The FDA has asked that the application be resubmitted, so the timeline for its review is not yet established. 04 MSCONNECTION: WINTER 2013 LETTER FROM THE PRESIDENT PRESIDENT’S MESSAGE A YEAR TO CELEBRATE The past year was also an extremely successful one for our programs, with over 1,700 people attending various programs that included treatment updates, wellness trainings and even a program held in the Poconos that provided tips on keeping your finances and relationships as healthy as possible. In addition, our newly-minted outreach days and the –disease-modifying where staff set up shopmedications for the day in local communities to meet in person withispeople first oral treatment, Gilenia, expected living with MS – attracted 140 people at 23 to be approved any day now. These different sites. City to Shore celebrates 30 years The theme for our recent annual meeting was “A Year most things toLike Celebrate,” an involving peanut appropriate selection given theand gainsjelly the butter MS community sandwiches, the made over the past Bike MS: Scientists City 12 months. tocontinuing Shore Ride are tohad expand their a humble Tami Caesar, understanding of multiple sclerosis, and that is beginning. When President leading to exciting treatment news – including anchor for the approval of the secondnews oral treatment MS. Larry Kane first proposed the idea to our chapter, he Because research is such an overriding focus of simply thought a cycling fundraiser the National MS Society – after all, by 2015 from to $1 thebillion Jerseyto Shore it will Philadelphia have allotted over the search for treatments a cure—other might be better a good way toand raise a few good news for people living MS often much-needed dollars forwith a cause that is gets overlooked. Such is the case with the very dearand to services him. provided by our chapter programs to people living with MS and their families. It was 1980, nearly 17 years after In 2012,mother the chapter provided Larry’s died fromfinancial the disease, assistance worth nearly $400,000 to 485 when the first group of 78 cyclists different clients for in home health care, rode from Philadelphia to Ocean City rehabilitation services, counseling and beyond. with only one restdirectly stop featuring the In addition to funds from the Society, our staff also workedPB&J with other community aforementioned sandwiches. groups and agencies to provide services worth In 2010, the event will attract more more than $100,000. than 7,000 cyclists, requiring 1,200 volunteers, 200 safety marshals, 24 bike mechanics and five rest stops stocked with everything from soup to advancements are possible thanks And then there is our wonderful network of to investments like the $33.5 million self-help groups. There are currently 25 active designated forthan MS400 research lastThese year by groups with more members. groups are a great way to network with others the Society in your area living with MS and get some helpful tips that for mayresearch help you overcome The funding is vitallysome of the daily challenges that come with MS. important, but it can never overshadow Finally, whenways looking on local the year of the many weback help people 2012, I would be remiss if I did not thank living with MS. Events like City to the many of you who helped make our events Shore made it MS possible us to help such as Walk MS, Dinnerfor of Champions and Bike MS such aaresounding success. The Nicole Hanna, young Philadelphia funds you helped raise, whether as a donor, woman living with MS. Through our participant or volunteer, helped make our City on Saturday afternoon or at PATCO’s HomeABLE program we were able progress in research direct assistance to Woodcrest Station and on Sunday afternoon. could par people livingpeople withmajor MS possible. to undertake modifi cations Just having living with MS at the Society, p event to cheer and say thank you is one to have the Hanna’s bathroom it We exciting things plannedto formake 2013 and Sincerely of the many reasons that City to Shore Nicole, increasing I more hope toaccessible see as manyfor of you as possible at the Kevin An is known a truly memorable events andas programs coming up cycling in the next her independence. Programs like Team An experience. few months. HomeABLE would simply not be Sincerely, Sincerely, possible without the hard work of EDITOR’ our event participants, volunteers and cyclists is donors. concern. Tami Caesar, Caesar President Tami President On behalf of everyone who has ever younger in Bike M been affected by MS, I want to thank In 2007, that first group of cyclists and the task force NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG 2012 ANNUAL MEETING: A YEAR TO CELEBRATE Nearly 500 members of the local MS community came together to celebrate the accomplishments of the past year and hear what’s on the horizon at the 2012 Annual Meeting: A Year to Celebrate on December 4 in Cherry Hill, N.J. The chapter provided an update on how it is helping local people living with MS and honored the efforts of key volunteers in the MS movement. 05 Dr. Judith Grinspan received the inaugural Professional Impact Award. Dr. Grinspan is a Research Associate Professor of Neurology at The Children’s Hospital of Philadelphia and the Mahoney Institute for Neurological Science at the University of Pennsylvania. A leader in her field, Dr. Grinspan’s lab studies the controls of the development of the myelinating cells of the central nervous system, from stem cells through to myelination. Her research takes a look at repairing the myelinating sheath around the central nervous system to restore function that has been lost due to multiple sclerosis. Independence Blue Cross (IBC) was recognized as Corporate Champion for 2012. No company has had as great and wide ranging an impact as IBC. IBC’s Blue Crew was heavily involved in our Walk MS and Bike MS events this past year. They helped stuff envelopes before the events and even helped unload after. As well, IBC was a major supporter of our Women Against MS Luncheon and MS Dinner of Champions. Senator Fred Madden received the Legislator of the Year Award. A champion for people living with MS, he was instrumental in the passing of the New Jersey Multiple Sclerosis Task Force Bill that was signed into law by Governor Christie in January of this year. He co-sponsored a bill that provides increases in allowance paid for veterans with MS. As Vice-Chair of the Health, Human Services and Senior Citizens Committee, Senator Madden has offered his support to a wide range of legislation that will help people living with MS. Long-time volunteer Dennis Dougherty received the Thacher Longstreth Award. This award pays tribute to the founder of our chapter and someone who had an unparalleled influence on the fight against MS during the early days of the National MS Society. Not only is Dennis an invaluable part of the chapter’s development team, he takes a leadership role in services and MS advocacy. Dennis’ relationship with the chapter began nearly 20 years ago as a cyclist... which led to serving as chair of the ride’s planning committee for three years. Each year he continues to lead the development of the bike tour’s 100-mile route and has put considerable time into our Walk MS and Challenge Walk MS events. He also recruited South Jersey homebuilders to help with home modifications, and has taken a leadership role on the New Jersey Government Relations Committee. 06 Brian DiDonato received the Distinguished Volunteer Service Award for his dedication to the chapter. A passionate leader in the fight against MS, Brian took the helm as Board Chair in 2009 where he worked to increase funding research while efficiently reducing expenses as a function of revenue. He’s a familiar face at many of the chapter’s events including MuckRuckus, Bike MS: City to Shore Ride and MS Dinner of Champions. MSCONNECTION: WINTER 2012 CONTINUED FROM PAGE 1 grant is $500, and clients must have applied for LIHEAP and Crisis grants if they were available. Eligibility requirement is up to 175% of the federal poverty level. ECA also administers the Philadelphia Housing Development Corporation (PHDC) Heater Hotline Program, through which they repair or replace more than 5,000 heating systems each year, free, for low-income homeowners. Call the Heater Hotline at 215-568-7190. DISCOUNTED RATES ON GAS AND ELECTRIC PECO offers a discounted residential rate on gas and electricity for low-income customers, called the CAP rate. Income eligibility guidelines are: no more than $1,362 per month for a one-person household; $1,839 for a twoperson household; $2,317 for three persons; $2,794 for four persons. A highlight of the meeting was keynote speaker David Osmond, part of the second generation of singers in the famous Osmond family - and a second generation living with MS. We are pleased that so many of you were able to meet David after the meeting and purchase a signed copy of his CD. For anyone who missed it, David’s CD and other songs are available to purchase on iTunes. Dr. Dina Jacobs delivered this year’s research update, covering the latest news in MS treatment. Dr. Jacobs is an Assistant Professor of Neurology and Associate Director of the Multiple Sclerosis Center at the Hospital of the University of Pennsylvania, and Co-Chief of the Multiple Sclerosis Division at the University of Pennsylvania. To download her PowerPoint presentation (PDF), or to listen to the podcast, visit MSconference.com. The PECO Customer Assistance and Referral Evaluation Services (CARES) helps specialneeds, low-income customers who are unable to pay their utility bill due to a temporary personal or financial hardship. To determine if you qualify for either of these PECO programs, call 1-800-774-7040. For people whose income is 150% of the poverty level or less, PGW has a Customer Responsibility Program which offers a discounted rate, based on income and number of people living in the home. This program also provides for a monthly payment of $5 on any debt owed to PGW prior to enrolling in the program. Part of the prior debt is forgiven, if the customer pays bills on time going forward. CONTINUED ON PAGE 16 NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG 07 CHAPTER WELCOMES NEW TRUSTEES THE FOLLOWING NEW MEMBERS HAVE BEEN ELECTED TO A THREE-YEAR TERM ON THE GREATER DELAWARE VALLEY CHAPTER’S BOARD OF TRUSTEES: Pari Hashemi, Financial Advisor, Wells Fargo Advisors, LLC Gina Clark, Senior Vice President and Chief Marketing Officer, AmerisourceBergen Corporation Clark leads strategic marketing and integrated branding initiatives across the company and its business units. She brings more than 25 years of healthcare industry experience to this role, having previously served as Senior Vice President of Marketing and Business Development for AmerisourceBergen’s specialty pharmaceutical services arm. AmerisourceBergen has supported Greater Delaware Valley Chapter events including the 2012 MS Dinner of Champions on November 9. Hashemi has become a major mover and shaker at the Greater Delaware Valley Chapter. Her support of the National MS Society includes leading a new young professionals committee; being the top fundraiser; being the top fundraiser for the 2011 Leadership Class; participating in the Bike MS: City to Shore Ride, MuckRuckus MS Philly and Women Against MS events. IN ADDITION, THE FOLLOWING OFFICERS WERE NAMED AND TRUSTEES RE-ELECTED TO ANOTHER THREE-YEAR TERM: Marianne Jackson became Chair of the Board of Trustees following Brian R. DiDonato’s three-year term. Mike Bogdonoff, Pat Eiding, Laura GrossiTyson, Robert Kimmel, Nick Maiale and Jeff Petty were re-elected. The candidates were voted in by the membership at the chapter’s Annual Meeting on December 4. 08 MEET OUR VOLUNTEER HALL OF FAME INDUCTEES Each year, local volunteers are nominated to receive national recognition for their outstanding service to the National MS Society. Congratulations to the Greater Delaware Valley volunteers inducted into the Society’s Volunteer Hall of Fame for 2012. Funding the Mission Champion: Jack Beiter serves as a senior statesman for the Bike MS: City to Shore Ride, having begun his commitment to the Society after his 70th birthday. Years later, “Captain Jack” is one of the ride’s highest fundraisers, raising money and awareness through his networks Jack Beiter with National MS Society CEO Cyndi Zagieboylo at the National Leadership Conference in November MSCONNECTION: WINTER 2013 from Rotary and a lifetime in business in the region. The octogenarian also ensures that his team’s cyclists focus on safety and mission, with all members required to raise $1,000 to participate. Health Professionals Champion: Kris Levine is the Neurology Specialty Programs Coordinator at St. Luke’s MS Center. She works tirelessly to assist people living with MS in getting the best care possible. Her work with the National MS Society encompasses many activities including serving as a founding member of the Services Committee, Government Relations Committee, Leadership Class, and as captain of a Walk MS team of more than 65 people. Kris has achieved the Multiple Sclerosis Specialist Certification through the MS Consortium. Kris Levine (left) and Zagieboylo at the National Conference NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG 09 JUDITH M. VON SELDENECK HONORED AT MS DINNER OF CHAMPIONS PHILADELPHIA MAYOR MICHAEL NUTTER AND JUDITH M. VON SELDENECK. Six hundred distinguished guests attended the event which raised $475,000 for the Chapter to fund ongoing research, education and services in hopes to create a world free of MS. FROM LEFT: DINNER OF CHAMPIONS HONOREE JUDITH M. VON SELDENECK, PETER J. DEAN, MOLLY D. SHEPARD, DIANE SEMINGSON, ASHLEY LUNKENHEIMER, KEVIN VON SELDENECK. SEATED: AMY KNIGHT. The Greater Delaware Valley Chapter of the National MS Society presented its highest honor, the 2012 Hope Award for philanthropic service and community leadership, to Judith M. von Seldeneck, during the MS Dinner of Champions on November 9 at the Philadelphia Marriott Downtown. Mrs. von Seldeneck is the Founder, Chairwoman and CEO of Diversified Search. FROM LEFT: FORMER PENNSYLVANIA GOVERNOR ED RENDELL, JUDITH M. VON SELDENECK, JUDGE MIDGE RENDELL AND LARRY KANE, VICE CHAIR OF THE CHAPTER’S BOARD OF TRUSTEES. 10 NATIONAL MS SOCIETY GRANT HELPS INGLIS HOUSE RESIDENTS MAKE THE MOST OF TECHNOLOGY Modern technologies continue to transform our lives, making it easier than ever to communicate with family and friends, learn about the world around us and complete everyday tasks. Yet some people living with MS find it difficult to use computers, tablets and smart phones because of issues with manual dexterity. While adaptive devices can make it easier, what really helps is having a trained guide to make them work for the individual. The Greater Delaware Valley Chapter recently awarded Inglis House a $20,000 grant to purchase new adaptive devices and bring in an intern with specialist knowledge to support residents who use the computers in the facilityâ€™s Adapted Technology Lab, as well as those who use their own computers and other technologies in their rooms. Inglis House was founded in Philadelphia in 1877 to serve people with physical disabilities. Today, under the parent corporation Inglis Foundation, the House supports 297 residents through nursing home services and many others through community services. They are one of the only organizations in the United States which specializes in serving people with MSCONNECTION: WINTER 2013 disabilities under the age of 65. Nearly half of its residents are living with MS. In recent months, staff had noticed an increasing interest in technology coupled with frustration from many residents who had given up hope that they could learn to use, or continue to use, technology because of symptoms associated with their MS. Staff did what they could to help, however they needed to expand the useful inventory of adaptive devices, and additional staff was needed for residents who owned their own computer configurations and electronic devices. The grant from the National MS Society has enabled Inglis House to purchase a host of new adaptive devices, including trackballs, joysticks, switches, keyguards, keyboard mounts and specialty keyboards. These devices are particularly helpful for people living with MS who have issues with manual dexterity. In combination with other funding, the grant has also made it possible for Inglis House to bring in an intern with expertise in adaptive devices to provide additional support. The intern provides training (on how to use the computer and adaptive device), set-up (to make sure that the individual is able to use the computer and adaptive device together), and on-going support (as an individualâ€™s needs change, which is especially important for people living with MS). While staff expected strong interest, they were surprised by the volume of requests that the intern has received. To date, the intern has responded to nearly 300 requests for help. NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG Inglis House is delighted with the positive impact that the grant has had on the lives of their residents. Not only are residents now able to use technology, they are also able to do so independently. One female resident had been adamant that she could not do anything for herself, not even use the remote control to change the channel on the television. She has very limited physical mobility and is unable to use her hands or turn her head. However, staff noticed that she is able to flick a switch with her chin. By teaching her how to use a switch, she now has full access to the computer through the help of a virtual keyboard. As a parent, she uses the computer to keep in touch with her children, and write letters and cards for her family. She is now also able to drive her wheelchair independently, which has been beneficial not only to herself but also her mother, who was once her full time caretaker. According to Dawn Waller, Director of the Adapted Technology Program, “Technology is about empowerment. It has completely changed this woman’s relationship with her mother and her children. She came to us a broken spirit, now she is beaming.” Another resident has remarked on how her newfound independence is improving her relationship with her husband. Although she has always been an avid writer, symptoms associated with her MS meant that she was unable to use a standard computer to type short stories, relying on her husband for this. Now, through the help of adaptive devices and the intern, she is able to write her short 11 stories independently. According to Dawn, “The newfound independence has saved her marriage. Her husband can now visit her at Inglis and be her husband, not her caretaker.” Through the grant, Inglis House has been able to provide residents with the adaptive technologies and support they need to make the most of technology. They are pleased with the positive impact that the grant has had on the lives of their residents, their level of independence and improved relationships with family members. Inglis is now able to provide full time support for their residents and through additional funding from the Pew Charitable Trust, support for individuals with similar needs in the local community. For more information about Inglis House, please contact Kate Farrell at Catherine. Farrell@inglis.org or call 215-581-0702. DRUG TRIAL RECRUITING IN PHILLY The ACCLAIM study is a clinical trial to test whether abatacept can stop or delay the progression of relapsing-remitting MS. The study is recruiting participants aged 18-65 to take part in the trial at the University of Pennsylvania. If you’re interested, contact Vanessa Zimmerman at 215-349-5162 or by email at firstname.lastname@example.org. To learn more about the study and eligibility requirements, visit acclaimstudy.org. 12 I RUN TO STOP MS CELEBRATES YEARROUND CAMPAIGN Six running seasons. Four countries and 15 states represented. More than $150,000 raised to fuel a cure for MS. That’s I Run. From first time runners trying out a 5K race to running enthusiasts who participate in ultra-marathons, from high school students to retirees, I Run to Stop MS is a collective of passionate individuals who want to help the National MS Society bring an end to MS now. ‘I Run to Stop MS’ is a different kind of fundraiser. For many, the appeal of the freedom to choose dates, locations and running distances is a major draw. This fundraiser allows you to sign-up for any race, walk or marathon and donate your proceeds to the National MS Society. For Paul Goldstone, who created this event, it fills an inherent need. Goldstone runs for his father, who has been living with progressive MS for many years. “His diagnosis has affected the entire family, which appears to be a negative,” said Goldstone, “but it also came with some positives. It helped bring the family closer together and helped inspire the launch of I Run to Stop MS in 2007.” MSCONNECTION: WINTER 2013 “As we wind down our 2012 campaign, I can’t help but feel a great sense of both pride and gratitude,” said Goldstone. “This year brought an especially interesting element to both the Philly marathon and our MS group as Hurricane Sandy recently forced the unfortunate cancellation of the New York marathon. I am a firm believer that there is always a silver lining. This brought us together with runners from Baltimore and New York, all running for a cure for MS.” As an avid athlete, Goldstone’s favorite events include the Ironman Lake Placid and the Philadelphia Marathon. “That’s what’s great about this event,” he said. “There’s no structure. You have complete freedom. You can do anything from walking a 5K to completing an ultra-marathon or Ironman, and everything in between.” Being a part of I Run is easy. Just find an existing event, register and start fundraising. We provide you with the tools to help you succeed. A suggested fundraising goal of $1,500 is encouraged, although not required. You can create your own team, or join Goldstone’s team, KarmaStriders. “We’ve had runners from Germany, Puerto Rico and Michigan,” Goldstone said. “We’re a good gang. We’re just trying to raise funds and awareness through endurance athletics.” Since its inception in 2007, ‘I Run to Stop MS’ has raised over $150,000. As an I Run fundraiser, you have the opportunity to make a difference. Plus, you get cool perks too. Raise $150 and receive a branded short-sleeved Tech shirt and visor; or challenge yourself to VIP status by raising $1,000 or more and receive the long sleeve Tech shirt. Goldstone encourages everyone to get involved by running or donating. “We don’t have to be there for others,” he said. “We get to be there for others. We’re the lucky ones.” For more information about I Run to Stop MS, visit nationalMSsociety.org/pae and click on Fundraising. NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG TEN YEARS. ONE MISSION. A WORLD FREE OF MS This fall, Challenge Walk MS celebrated its 10th anniversary. The two-day event took place on October 13-14. Walkers embarked on a 30-mile journey from beautiful Montgomery County to historic Philadelphia. Challenge Walk MS is the Societyâ€™s most mission-driven event, with most participants sharing an intimate knowledge of MS and how it affects peopleâ€™s lives. Many walkers are living with the daily challenges of MS themselves; others walk or volunteer for their parents, children, siblings and friends living with the disease. 13 14 MSCONNECTION: WINTER 2013 ANOTHER SUCCESSFUL BIKE MS: CITY TO SHORE RIDE More than 7,000 cyclists joined together with a common goal – to create a world free of multiple sclerosis. Cyclists from all over the country took part in the Chapter’s annual Bike MS: City to Shore Ride on September 29 and 30. The Philadelphia region’s largest cycling event, now in its 32nd year, raised $5.6 million to support medical research, programs and services for local families living with MS. NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG 15 FUNDRAISING BRIEFS THE RIGHT NOTES Passion Vines of Somers Point and Egg Harbor Township recently held “The Right Notes,” a fundraising event benefitting the National MS Society and the Somers Point Jazz Society. (FROM LEFT TO RIGHT) MICHAEL BRAY, OWNER OF PASSION VINES WINE & SPIRIT CO., JAYNE BRAY, LAUREN KALLINS, MARNI KALLINS AND RYAN BRAY. BRAY WITH NICHOLAS REGINE OF THE SOMERS POINT JAZZ SOCIETY (RIGHT). MEADOWLANDS COUNTRY CLUB The Meadowlands Country Club recently held a fundraising event in honor of employee John Brogan. The event raised $46,240. (FROM LEFT TO RIGHT) JOHN BROGAN III, KRISTIN MARNIE OF THE NATIONAL MS SOCIETY, CAROLE GREENBERG, MEADOWLANDS CLUB PRESIDENT ARNIE CAGAN, JILL TALASGROSSMAN AND IRA BERKOWITZ. The event, held on October 11 at Greate Bay Country Club, generated $37,000 for these noteworthy charities. 16 CONTINUED FROM PAGE 6 PGW also has a CARES program to help lowincome customers experiencing a temporary difficulty due to family or medical emergency, or other crisis. Anyone who is having, or anticipates having, a problem paying the gas bill is urged to contact PGW at 215-2351777 as soon as the situation arises, to discuss a payment plan and what assistance may be available. LOW-INCOME HOME ENERGY ASSISTANCE PROGRAM LIHEAP, administered by the state Department of Public Welfare, makes cash payments directly to the utility company to help low-income families pay for home heating fuel. This year, LIHEAP cash program will run from November 1, 2012 to March 29, 2013. Grants range from $100 to $1,000. Qualifying income for a household of two people is $22,695; four people, $34,575. MSCONNECTION: WINTER 2013 Philadelphia County Assistance Office 801 Market Street Phone: 215-560-3283 LIHEAP: 215-560-1583 Low Income Home Energy Assistance Program (LIHEAP) 1348 W. Sedgley Ave. LIHEAP phone: 215-560-1587 WATER BILL DISCOUNTS FOR SENIORS Philadelphiaâ€™s Water Revenue Bureau offers a 25% Senior Citizen Discount Rate on monthly water and sewer bills. To qualify, you must: be age 65 or older; live at the address on the bill; have the water and sewer bill in your name; meet a yearly income requirement. For details, call 215-686-6880; or write to: Water Revenue Bureau, P.O. Box 41496, Philadelphia, PA 19101-1496. MINOR REPAIRS CAN MAKE A BIG DIFFERENCE LIHEAP Crisis assistance is available in extreme circumstances, for instance, if the main heating source is broken, has been shut off, or the household is in danger of being without fuel (less than a 15-day supply) or of having utility service terminated (received a notice that service will be shut off within the next 60 days). These grants range from $25 to $400. Philadelphia Corporation for Agingâ€™s Senior Housing Assistance Repair Program (SHARP) provides minor repairs for low-income Philadelphians, age 60+. These can include repairing or installing new entry doors, locks, doorbells, smoke detectors, basement steps, railings and bathroom grab bars; all of which help improve the safety or security of the home. For more information call the PCA Helpline at 215-765-9040. You can apply in person, at the offices listed below or at one of the neighborhood locations (call 215-560-3283 for locations); or online at compass.state.pa.us. Through this website, you can also check on your eligibility for other benefits, including Medical Assistance, SNAP (food stamps), long-term care, and home- and community-based services. FOR HOMEOWNERS ONLY In addition to the Heater Hotline Program mentioned at the beginning of this article, PHDC has a Basic Systems Repair System for low-income individuals who own and live in a single-family home in Philadelphia. A home can qualify for repairs if it has: exposed CONTINUED ON PAGE 17 NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG 17 CONTINUED FROM PAGE 16 UNIVERSAL SERVICE FUND wires or other dangerous electrical condition; leaking or broken sewer or water service line; a violation notice from the Water Department; major interior damage, such as a collapsing ceiling due to a leaking roof. USF is a program created by the New Jersey Board of Public Utilities to help lowincome households pay for their electric and natural gas costs. To be eligible for USF, your household must be income eligible; and spend more than three percent of household income on gas and/or electricity; (or spend more than six percent of household income on electric heating). Apply any time of the year. USF is administered by the Department of Community Affairs. Current monthly income eligibility guidelines are: no more than $1,396 for one person; $1,891 for two people; $2,386 for three people; $2,881 for four people. Applications are only taken by telephone. When you call, you should have the following information ready: total monthly household income and all source(s) of that income; number of people in your household; and your Social Security number. Call: 215-4482160, Monday – Thursday, 8:30 a.m. to 4:30 p.m. Some programs have waiting lists, but seniors are encouraged to apply if they are eligible. NEW JERSEY ENERGY ASSISTANCE PROGRAMS LOW INCOME HOME ENERGY ASSISTANCE PROGRAM LIHEAP or HEA is a federally funded program that helps low-income households pay for heating costs (includes: electric, natural gas, oil and other deliverable fuels). Even if your heat is included in your rent, you may qualify. LIHEAP grants are also available for medically necessary cooling costs. Applications are accepted from October 1 through April 30. LIHEAP is administered by the Department of Community Affairs. For USF/LIHEAP applications, a list of county agencies that accept USF/LIHEAP applications and more information, go to energyassistance.nj.gov (Click on “energy assistance programs”) or call toll free 1-866-240-1347 (USF) or 1-800-510-3102 (LIHEAP). LIFELINE PROGRAM The Lifeline Utility Assistance Program is for eligible low-income senior citizens and the disabled. Lifeline benefits help eligible homeowners and renters with electric and natural gas costs. You may apply for Lifeline by filling out the Pharmaceutical Assistance for the Aged and Disabled (PAAD) application. Call 1-800-792-9745 for more information or go to the website: nj.gov/health and click on “Senior Benefits.” Lifeline is administered by the Department of Health and Senior Services. TEMPORARY RELIEF FOR UTILITY EXPENSES (TRUE) PROGRAM TRUE was designed to help low to moderate income households pay their natural gas and electric bills. TRUE provides benefits to income eligible households who have CONTINUED ON PAGE 18 18 CONTINUED FROM PAGE 17 not received USF or HEA in the past 12 months, have a notice of overdue payment for gas or electric service, and have a good payment history on utility bills. Apply online at ahanjtrue.com or call 732-982-8710. The TRUE program is funded by the Board of Public Utilities and is administered by the Affordable Housing Alliance. NEW JERSEY SHARES (NJ SHARES) NJ SHARES provides assistance to households in need of temporary help paying their energy bills due to a financial crisis. Applicants must have a history of good-faith payments with their energy company and not be eligible for LIHEAP, USF or TRUE. Call 866-657-4273 or go to njshares.org for more information. WINTER TERMINATION PROGRAM WTP protects residential customers from disconnection of natural gas and electric service from November 15 - March 15 if they participate in USF, LIHEAP, Lifeline Utility Assistance Program, Pharmaceutical Assistance to the Aged and Disabled (PAAD), Work First New Jersey/ Temporary Assistance to Needy Families, or Federal Supplemental Security Income (SSI). Also, persons unable to pay their utility bills because of circumstances beyond their control may request the protection of WTP. Customers should make every effort to pay as much of their bill as possible during the WTP period to avoid a large overdue balance at the end of the WTP. How do I enroll in WTP? You must call your utility company and request protection under the WTP and explain why you need this protection. For more information about the WTP, or if you have a complaint about your utility company, please call the Board of Public Utilities at 1-800624-0241. MSCONNECTION: WINTER 2013 HOW NJ CAN HELP: HAVE YOUR HOME WEATHERIZED FOR FREE! WHAT IS WEATHERIZATION? Weatherization is the installation of home energy efficiency measures to help reduce energy bills. Depending on the energy needs of the home, weatherization may include: insulation upgrades, heating/cooling equipment maintenance and appliance replacement. Eligible participants are provided with: • A free “home energy audit” to see how energy efficient a home is and how much money can be saved on energy bills through weatherization • Installation of recommended free energy efficiency measures There are two free weatherization programs in New Jersey: • Comfort Partners: Sponsored by the Board of Public Utilities’ Office of Clean Energy. Call 888-773-8326 for an application and eligibility requirements, or go to: njcleanenergy.com and click on “Residential” (electric and gas heat only). • Weatherization Assistance Program: Sponsored by the Department of Community Affairs. Households that apply for USF or LIHEAP can check the box on the application to request weatherization. Visit energyassistance.nj.gov (click on “energy assistance programs”) or call 800510-3102 for more information. 19 NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG MAKE YOUR MARK AGAINST MS! MARCH 11-17, 2013 IS MS AWARENESS WEEK • Encourage everyone to change their profile picture to the Society’s logo during that week; ask friends and family to do the same GET OUT IN YOUR COMMUNITY The goal of MS Awareness Week is to acknowledge people who are a part • Paint the town orange! Ask of the movement, invite new people your religious group, club, or to join the movement, and encourage organization to post literature everyone to get involved during MS and decorate in orange. Ask Awareness Week by taking at least businesses to use orange light one action to demonstrate their bulbs during the month of commitment to a world free of MS. March • Write notes on MS stationary or What will you do? note cards to doctors, legislators, Get inspired by some of businesses and clubs who have these successful examples: supported MS-related efforts. Tell them you appreciate their WEAR ORANGE! support • Wear Walk MS or Bike MS • Connect with restaurants, coffee t-shirts, jerseys, buttons, pins and shops and other retail businesses. bandannas or just wear orange If the business serves food or and show your support! drinks, ask them to use NMSS orange napkins during the week. USE SOCIAL MEDIA Ask if they will serve a drink or food item that is orange and AND EMAIL perhaps donate a portion of • Send videos about MS. Browse proceeds back to the Chapter the Society’s YouTube channel and send a new video to friends • Get permission to put flyers in local business windows to inform each day people about MS Awareness • Use Facebook to share facts Week and events you have about MS and invite people to planned. Print on bright orange participate in Walk MS or Bike paper! MS events • Add an MS Awareness Week e-mail signature to your emails CONTACT YOUR • Send email blasts to coLEGISLATORS AND workers, friends and family. Let LOCAL OFFICIALS them know that you are their connection to MS, give some facts • Visit your state legislators. During the legislative session, about MS, and ask them to pass your representatives are often it on in their district offices in your community on Fridays. Call ahead and make an appointment • Arrange for your city council to present a proclamation declaring the week of March 11-17, MS Awareness Week in your town. Call your council person or the Mayor’s office to arrange this. Be sure to let your community newspaper know! SHARE YOUR STORY • Arrange for a support group to invite friends, relatives and others to a meeting. Hold the meeting during MS Awareness Week. You can tell a story about how MS affects you and one about how people can get involved. Let them know how helping, volunteering and donating to the cause can make a difference in people’s lives • Use the media...Contact your local newspaper, radio and TV station. See if they will cover one of your events or write a story about you • A letter to the editor is an easy way to share your story with the public and call for action. See samples on our website, nationalMSsociety.org/pae Don’t forget to let us know what you did for MS Awareness Week by emailing us at email@example.com. We may feature it in our next issue of MSConnection. GO ORANGE! 20 JOIN US FOR THE 2013 EMPLOYMENT TELECONFERENCE SERIES: CAREER DECISIONS AND MS The National MS Society is pleased to present a series of six teleconferences on a variety of topics related to employment and MS. Teleconferences will take place from 7 to 8 p.m. EST on alternate Wednesdays until and March 27, 2013. ABOUT THE SERIES A teleconference is an opportunity to learn new information by calling into a designated toll-free number to hear an interactive presentation. You can ask questions or just listen to the information. Best of all, you can do so from the comfort of your own home. Participate in all six teleconferences or just the ones that interest you. Please note that you will need to register for each teleconference individually. Should I Work From Home or Start My Own Business? Wednesday, January 16 from 7 to 8 p.m. Trying to decide if working from home or starting your own business is for you? Experts in both of these areas will talk about what it takes to be a successful home-based employee or entrepreneur. The deadline to register for this call is January 9. Is it Time? Deciding to Change Careers or Stop Working Wednesday, January 30 from 7 to 8 p.m. Working with MS is possible, but can be challenging at times. Is working or working in your field no longer an option? How do you know when itâ€™s time to stop or make a change? Learn from a counseling professional what to consider when having to make this important decision. The deadline to register for this call is January 23. MSCONNECTION: WINTER 2013 Deciding How to Plan Your Job Search. Employers Share How They Find Employees Wednesday, February 13 from 7 to 8 p.m. Hear from a panel of employers on what they really look for in a job candidate, where they find candidates and how they fill openings. The deadline to register is February 6. Should I Work? Work from Home Options for People on Social Security Disability Wednesday, February 27 from 7 to 8 p.m. Are you on Social Security and want to work? Do you need to or prefer to work from home? Learn how working might impact your disability benefits and hear about work from home opportunities for people on Social Security. The deadline to register is February 20. The Impact of Health Insurance on Career Decisions Wednesday, March 13 from 7 to 8 p.m. Health insurance considerations can impact your decision to change jobs or leave the workforce. Learn about legal protections and questions to ask to ensure you have the coverage you need. The deadline to register is March 6. How to Talk about MS to Your Employer Wednesday, March 27 from 7 to 8 p.m. Once you decide to disclose there are still many unanswered questions. Hear from employers and disability advocates on how to talk with your employer about your MS. The deadline to register is March 20. HOW TO REGISTER To register for one or more of the teleconferences in this series, call 1-800-344-4867 at least one week prior to the teleconference(s) in which you would like to participate. You will receive call-in instructions and an information packet via email approximately one week prior to each call for which you are registered. 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I thought I’d then tell him my usual spiel about multiple sclerosis just so he’d know what he was getting himself into. “you know I have this thing,” I began. “It’s not a big deal, but sometimes I feel too fatigued to do anything. I take an injection, and oh, it’s called ms,” I finished in a hurry. I expected Tim to say something like, “never mind about you — I want someone to go surfing with me, MSCONNECTION: WINTER 2013 run marathons and do adventure biking.” but I never thought in a million years he would smile and say, “Huh, small world. I have ms, too.” “YOu kNOW I hAvE thIS thING ... It’S NOt A bIG DEAL, but SOMEtIMES I fEEL tO0 fAtIGuED tO DO ANYthING. I tAkE AN INjEctION, AND Oh, It’S cALLED MS.” I remember sitting in stunned silence that the same someone I was interested in was also someone who understood what life was like with ms. Tim knew about the injections, the doctor’s appointments, the fatigue and everything else I experienced daily. I didn’t start dating him because he had ms; I dated him because he was everything I had been looking for. He was intelligent, confident, athletic, a record-setting college runner and kind. after just a few months, we realized that we wanted to spend our lives together. When we said our wedding vows a year later, the phrase “in sickness and in health” had a deeper meaning because sickness could strike at any time due to the unpredictability of ms. and soon after we got married, it did. Within the year, our son, Will, was born. I remember wondering if I could handle the fatigue, the stress of childbirth and coping with a new little baby who could do nothing for himself. I was scared, but my husband said something to me that I’ll never forget. He said, “you’ll always have me at your side.” SuSANNA’S AND tIM’S WEDDING 23 NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG after a few months, I saw that friends who had had children around the same time were starting to bounce back, training for half marathons and triathlons, and going back to work. On my side, I was having an ms relapse, on top of the strain of giving birth and being a new mom. “I WOrrIED thAt MY SON WOuLD MISS Out ON thINGS bEcAuSE I cOuLDN’t DO thEM, AND I WAS upSEt thAt I hAD YEt ANOthEr rELApSE.” I felt isolated in my daily struggles. I worried that Will would miss out on things because I couldn’t do them, and I was upset that I had yet another relapse. Through it all I had my husband at my side, and still do. I also had a team of doctors who cared about me and helped me to recover. since my last relapse, there are some things I can’t do anymore, but I can look at my son and find joy through the way he experiences life. and I also came up with the idea of Café moms during my recent relapse. It’s a support group where mothers who have ms and who have children of any age can go to express their concerns, listen to new research and find support in a nurturing environment with people who know what it’s like to walk in your shoes. most of all, at Café moms, mothers find they’re not alone. n susanna redmer is a freelance reporter and the author of the young adult historical fiction novel, The Time the Earth Shook. DON’t GO It ALONE If you’re feeling isolated, reach out. Call an ms navigator at 1-800-344-4867 to find a support group near you, or call msFriends at 1-866-673-7436 to talk to a peer with ms. you can learn more about msFriends and other ways to connect with others like you at nationalMS society.org/connectionprograms. moms with ms can join the “moms with ms” group at MSConnection.org and find resources for families at nationalMSsociety.org/FamilyMatters. thE rEDMEr fAMILY 24 NEWLY DIAGNOSED ChECk up ON YOur hEALth When I think of my health, multiple sclerosis dominates my thoughts. I run through my inventory of symptoms that are acting up and medications that are causing side effects. Usually, it’s only when I have something like a cold or a stomach virus that it occurs to me that there is more to my physical health than my MS. Unfair as it might seem, people with MS are subject to the same health problems as people who are not living with the disease. We have the same lifestyle and aging issues. We have to consider preventive care for things like heart disease, high blood pressure and cholesterol as we age. Women need to get mammograms and pap smears on a regular basis. We need to keep up with immunizations, as well as visits to dentists and eye doctors. (Visit nationalMSsociety.org/ preventivecare for preventive care recommendations.) There are also special risks that we have that are directly or indirectly related to our MS, such as: MSCONNECTION: WINTER 2013 • Osteoporosis: People with MS are more likely to have osteoporosis (loss of bone density). This is due to a number of factors, including limited mobility, low levels of vitamin D (which is essential for calcium absorption) and excessive use of corticosteroids (for instance, many Solu-Medrol courses over a short period of time). Your doctor can order a bone scan to test for osteoporosis. • Depression: Depression can be a primary symptom of MS. It can also be indirectly caused by the losses and unpredictability of MS. Your neurologist or general practitioner should be able to refer you to a psychologist or psychiatrist to treat your depression, preferably one with experience treating patients with MS. • Vitamin deficiencies: People with MS tend to have low levels or deficiencies of vitamin D and vitamin B12. Ask your general practitioner about tests and a treatment plan if needed. Make an appointment to see your regular doctor and get the rest of yourself checked out. The last thing that any of us needs is additional health problems that could have been caught early or prevented by taking action. Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and ms.about.com. 25 NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG BE INSPIRED. GET CONNECTED. WALK MS. Greater Delaware Valley Chapter Walk 2013 REGISTER TODAY walk4MS.org 1-800-883-WALK Dorree, diagnosed in 1984 Walk MS connects people living with MS and those who care about them. It is an experience unlike any other — a day to come together, to celebrate the progress we’ve made, and to show the power of our connections. A WORLD FREE OF MS Early and ongoing treatment with FDA-approved 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 1-800-883-WALK. WALK MS: LOCATIONS 04.21.13 05.05.13 Elmwood Park Zoo Norristown, Pa. Coca-Cola Park Allentown, Pa. East Goshen Township Park West Chester, Pa. Devon Horse Show & Country Fair Devon, Pa. Gring’s Mill Reading, Pa. Lenape Park Sellersville, Pa. Ridley Creek State Park Media, Pa. Tyler State Park Newtown, Pa. 05.04.13 WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS Philadelphia Museum of Art Philadelphia, Pa. Medford Lakes Medford Lakes, N.J. North Penn High School Lansdale, Pa. Ocean City Boardwalk Ocean City, N.J. Pocono Raceway Long Pond, Pa. Washington Lake Park Washington Twp., N.J. 26 FACE OF MS: MARIE KANE Yardley, Pa. resident Marie Kane is the 2006 Bucks County, Pa. Poet Laureate whose work is widely published. In 2012, her book, Survivors in the Garden, centering on her life with multiple sclerosis, was published by Big Table Publishing. For more information about Marie and her poetry book, visit mariekanepoetry.com. I was diagnosed with relapsing-remitting multiple sclerosis in 1991 at the age of 39. I was angry, scared, and worried. At first, I coped with the symptoms, but the disease worsened, MSCONNECTION: WINTER 2013 and I was diagnosed with Secondary Progressive MS in 2005 and two years later, had to retire from teaching high school English—a job I loved. I reacted with horror whenever fellow writers and friends suggested that I write about my disability. Why would I want to hang that shingle on my literary house? Display my failing, flailing body to the world? Admit that I was, in fact, disabled? Better to ‘disembody’ my writing, to mask the lagging leg and its brace, my double vision, spasticity, numbing fatigue, cloudy mind, increased dependency on my husband—to hide MS by never mentioning it. If I didn’t write about it, then it was not important to the poet—or person—I was. I’m 61 now, and often write of MS. Why did I write Survivors in the Garden? Because I forgave myself, forgave this disease. I knew that while poetry could not, would not, bring back my other, ‘whole’ self, this new self—with leg brace, quad cane, walker, scooter—could enable me to write about what all of that means. Writing was touted as a way to deal with this diagnosis so that maybe I could conquer it, learn to live with it. But that is not accurate. I’ve learned that writing poetry about MS and its impact on my life is to face the demands of this disease, to refute or accept those demands, and to bow under or defy their effects. My poetry often concerns the unpredictability of living with MS, how it inhabits my life, and alters my life. If you have been recently diagnosed with MS, read, read, read about it, ask questions, find a neurologist you trust, share with loved ones. You are not the same person you were before this diagnosis; my best advice is to find out who you are with it. NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG PA INTRODUCES NEW GOVERNMENT RELATIONS COMMITTEE We are pleased to announce the members of the new PA Government Relations Committee (GRC). This committee is charged with identifying the legislative priorities that activists will work on in the coming year. Committee members will also work to develop relationships with key legislators and bring awareness about multiple sclerosis to our elected officials. John Platt, Moon Township GRC Chair John has been a longtime volunteer advocate. Diagnosed with MS in 2005, he has worked to pass the Congressionally Directed Medical Research Program, provided testimony to the state’s insurance committee on the proposed UPMC/Allegheny General Hospital merger, and attended the National MS Society’s Public Policy Conference where he met with federal representatives. John worked with state staff to build and launch the new GRC. Frank Austin, Pittsburgh Diagnosed 29 years ago, Frank began his volunteer work in California. Frank was an active self-help group leader, and a member of the California 27 State Citizen Corp Council. Since moving to Pa., Frank has engaged in advocacy work around expanding transportation options for people with disabilities in the Pittsburgh area. Frank is also volunteering on numerous advocacy projects. Sarah Gibbons, Ridley Park Diagnosed with MS in 2008, Sarah currently serves as the Community Relations Manager at The Children’s Hospital of Philadelphia. Sarah holds a Master of Social Service in Policy Practice and Advocacy and a Master of Law and Social Policy from Bryn Mawr College’s Graduate School of Social Work and Social Research. Sarah attended the 2011 Public Policy Conference and has volunteered on multiple advocacy projects. Angela Gorzelsky, Johnstown Angela has been living with MS since 2003; she currently works at the Johnstown Credit Bureau. Angela was instrumental in the passage of the Congressionally Directed Medical Research Program, capitalizing on her strong relationship with now deceased Congressman John Murtha. Angela has strong relationships with numerous legislators and has been a speaker at the Society’s Public Policy Conference. 28 MSCONNECTION: WINTER 2013 Terri Greenberg, Mt. Lebanon Terri was diagnosed with MS in 1985. Terri is president of HALCO, a family-owned wholesale costume business, specializing in Santa Claus suits and Christmas accessories. Terri currently serves on the National Board of Directors for the Costumer’s Association and is also involved in local school advocacy work. Terri plans on using her business connections to help the GRC build key relationships with state and local officials. Timothy Holwick, Philadelphia An attorney, Timothy works as a Regulatory Affairs Associate. He became involved with the MS Society when his girlfriend was diagnosed with MS in May of 2012. Prior to his current role, Timothy’s previous experience included doing policy analysis. He has also developed a blog and Twitter account to track and monitor Philadelphia City Council. Timothy is currently volunteering on another advocacy project, helping to map our PA representatives. Erika Jeanette, Harrisburg As a legislative assistant for Triad Strategies, Erika splits her time between the Harrisburg and Philadelphia offices. A former intern for the House Democratic Caucus, she developed a strong understanding of the legislative process and knowledge of a variety of public policy issues. Erika assists in the implementation of a variety of client services at the local, state and federal levels including research and bill tracking, grant writing and relationship building within the political community. She graduated with honors from The Pennsylvania State University. She has been a volunteer with the Central PA Chapter and has attended the National MS Society’s Public Policy Conference. Mary Ellen Keller, Feasterville Mary Ellen Keller is the Director of Training and Resident Life for The Philadelphia Protestant Home, a continuing care retirement community in northeast Philadelphia. She has served as a consultant and educator in the long term care arena for the last 20 years, has spoken at numerous state conferences, and serves on the board of directors for the Pennsylvania Assisted Living Association. Newly diagnosed, Mary Ellen is looking forward to the challenge of serving on the GRC to help advance the Society’s goals. Yun “Rose” Li, Philadelphia Born in Beijing, China, Rose came to the U.S. at the age of 9. Rose graduated summa cum laude from Duke University and is now an 29 NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG Karen McNear, Gilbertsville Karen is a passionate advocate for military issues and has worked with legislators to address military related concerns for several years. Diagnosed in 2010, Karen plans on using her experience to help the GRC move its advocacy agenda forward. Karen currently works as a paramedic. In addition to her advocacy volunteering, Karen has also volunteered with the Greater Delaware Valley Chapter helping with Bike MS: City to Shore Ride. Kristin Thies, King of Prussia Kristin has been a caregiver and advocate for her father who has lived with MS for numerous years. A member of the Inglis Consumer Advisory Committee at Inglis Foundation, Kristin brings a unique understanding of the long-term care system, as well as relationships with state officials. As a CPA, Kristin uses her connections through her professional associations to help advocate for change in the long-term care setting. For more information about the GRC or to learn how to get involved, please contact Karen Mariner at 1-800-548-4611 or email Karen.Mariner@nmss.org. JOHN MARMAROU JOINS NJ GRC John Marmarou, DPT, president and director of physical therapy at Total Rehab & Fitness in Cherry Hill, recently joined the NJ Government Relations Committee. He joins Sue Barber of Richland, Mickey Bassman of Voorhees, Sondra M. DeAntiono, M.D., of Mount Laurel, Dennis Dougherty and Donald Elsas of Cherry Hill, Pamela Trosino of Tabernacle, and Patricia Zimmermann of Lawnside. CONNECT WITH US: MD/PhD student at the University of Pennsylvania. During her first-year medical school course in longitudinal patient care, Rose met and cared for a patient with multiple sclerosis, an experience that inspired her to take an active role in championing the cause of MS and neurodegenerative disease through research and advocacy. Rose is currently assisting the advocacy staff by helping to analyze the results of a statewide survey that attempts to identify the key issues impacting people living with MS in Pa. PA: f facebook.com/MSPACAN twitter.com/MSCANPA NJ: f facebook.com/MSNJCAN twitter.com/NMSSNJCAN 30 EMERGENCY PREPAREDNESS The recent hurricane demonstrated the importance of preparing in case of an emergency. Most states recommend that people with disabilities register with the Special Needs Registry to help emergency responders locate and safely evacuate people who could find it especially difficult in the event of a major disaster. By signing up for the Registry you will let emergency responders know who you are and what type of need you have. The information you provide will be used in the planning process, as well as in post-disaster response. If a disaster occurs in your area, this registry will be used to enhance the efficiency of response agencies to serve those with specific needs. Residents of New Jersey should visit the NJ Register Ready website at registerready.nj.gov or call New Jersey’s toll-free 2-1-1 line. Residents of Pennsylvania should visit specialneedspa.org or call your local county’s office or Pennsylvania’s toll-free 2-1-1 line. These registration websites allow residents with special needs and their families, friends and associates an opportunity to provide information to emergency response agencies, so emergency responders can better plan to serve them in a disaster or other emergency. The information collected is confidential and will not be available to the public. The information will be held securely and only used for emergency response and planning. MSCONNECTION: WINTER 2013 GADGET CORNER: ONE HANDED SCISSORS Some household items can be difficult or impossible to use if you have a disability. Scissors, for instance. If you have dexterity problems, tremors or spasms, or your grip is weak, they can be just out of the question. Here’s the solution! One-handed scissors let you cut whatever you need to without having to get help from someone else. You work one handed scissors by pushing down on the top lever, so there is no need to hold them. They reopen automatically once released, so whatever you’re cutting doesn’t get trapped. One-handed scissors have to be used on a level surface, but they’re very lightweight and easy to carry to where you need them. Still, with something this useful, why not keep one pair in the kitchen and one in the living room? Whether it’s for wrapping, crafting, or cooking, you’ll find these essential. They come with a blade guard for safety. Some models have a built-in base for further safety and stability. Prices range between $20-$30 and are available through Amazon.com and similar retailers. NATIONALMSSOCIETY.ORG/PAE | PAE@NMSS.ORG WHAT A DIFFERENCE A DAY MAKES! MS SERVICE DAY TOOK PLACE ON SATURDAY, OCTOBER 27, 2012 IN CHESTER COUNTY, PA. We would like to thank the 30 volunteers who donated their time and energy to help 10 local people living with MS with yard work, deck painting, power washing and other household tasks that are made difficult because of their symptoms. We could not have done it without you! 31 National Multiple Sclerosis Society Greater Delaware Valley Chapter FREE MATTER FOR THE BLIND OR HANDICAPPED 30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED 1-800-548-4611 n nationalMSsociety.org/pae CONNECT WITH US ONLINE: f Like us: facebook.com/greaterdelMS Follow us: twitter.com/greaterdelMS You Tube Watch us: youtube.com/nmsspae Pin us: pinterest.com/greaterdelvalMS MANY THANKS TO ALL OF OUR VOLUNTEERS Each year, the Greater Delaware Valley Chapter depends on the generosity of thousands of volunteers who devote their time and energy to making our events successful. You helped organize 18 amazing Walk MS events, rose before dawn to serve 7,000 cyclists at Bike MS: City to Shore Ride and journeyed 30 miles with our Challenge Walkers. Your dedication is critical to creating a world free of MS for the 14,000 local families living with the realities of multiple sclerosis. Thank you to all of our volunteers for being so giving of your time and so committed to our cause. If you or your group would like to volunteer in 2013, please contact Joy McManus at 1-800-548-4611 or email firstname.lastname@example.org.