MSCONNECTION NEWSLETTERPENNSYLVANIA & SOUTH JERSEY€¦ · losing her health insurance, which means she can afford her daily medication. A man in Pike Creek, DE clicks “share”

WINTER 2015 DELAWARE, SOUTHEASTERN

PENNSYLVANIA & SOUTH JERSEY

MSCONNECTION NEWSLETTER

INSIDE THIS ISSUE

12MANAGING MONEY WITH MS

14TIPS FOR A SUCCESSFUL INTERVIEW

20ANNUAL MEETING HONOREES

28MEDICAID EXPANSION

30FACE OF MS: KATHLEEN MCSHERRY

It stops a woman in Stroudsburg, PA from

losing her health insurance, which means she can

afford her daily medication.

A man in Pike Creek, DE clicks “share” on an article about how to keep health

insurance coverage.MS AWARENESS WEEKGet your orange on! March 2-8 is your time to show the world that we are > MS.

Find out more and tell us how you’re connected on page 16. n

02 MS CONNECTION: WINTER 2015

©2015 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 prescriptions. 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 they 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 [email protected] or one of the addresses above. Include your name and a phone number or email address where we can reach you, if necessary.

NOTE: We may edit your letter for length and content.

CHAPTERS JOIN FORCES As of January 1, 2015, the Delaware and Greater Delaware Valley Chapters have joined forces to better serve people affected by MS throughout the area. This realignment is part of a national effort to ensure that every donor dollar is used as efficiently and effectively as possible to help people living with MS live their best lives as we work to stop MS in its tracks, restore what has been lost and end MS forever. The unified chapter, which is poised to become one of the country’s most successful in terms of fundraising and addressing the needs of people affected by MS, will retain offices in Philadelphia and Wilmington. For more on this announcement, please see the President’s Message at right.

WILMINGTON OFFICENational Multiple Sclerosis Society 2 Mill Road, Suite 106 Wilmington, DE 19806 302-655-5610

PHILADELPHIA OFFICENational Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611

03NATIONALMSSOCIETY.ORG | 1-800-FIGHT-MS

PRESIDENT’S MESSAGE

BEGINNING A NEW CHAPTER

I am pleased to report that the Trustees of the Greater Delaware Valley Chapter and Delaware Chapter have voted unanimously to join forces. The new chapter,

which will serve Delaware, South Jersey and southeastern Pennsylvania, will begin unified operations immediately.

We are excited about the opportunities that lie ahead and believe that combining our collective strengths will increase our ability to meet our mission goals. Furthermore, consolidating administrative functions will allow us to streamline operations and increase fundraising effectiveness while expanding programs, services and advocacy for the more than 15,000 people affected by MS in our area.

Getting to this point has taken a tremendous amount of time and effort. Leadership volunteers and staff members from both chapters have dedicated countless hours as we worked through the due diligence process.

This newly united chapter belongs to its members and is led by a Board of Trustees that includes committed volunteers from all three states in our chapter territory. The Board and staff are committed to increasing the MS Society’s presence and impact throughout the area and we want connect with as many of you as possible at programs and events in as many locations as possible during 2015.

Moving forward, everything we do as a chapter will focus on ensuring that:

n Each person with MS has the opportunity to live their best life with more connections to information, resources and others with shared experiences

n More research is funded to change lives and end MS

n The voices of people living with MS drive change where necessary

n Everyone who wants to do something about MS can fuel progress

If you have any questions about the chapter realignment or the direction of the National MS Society, I encourage you to reach out to me at 215-271-1500 or email me at [email protected]. I thank you for your support and hope your new year is off to a great start.

TAMI CAESAR, PRESIDENT

Sincerely,

Tami Caesar, President


LETTER TO THE EDITORI have MS and have been registered with the Philadelphia chapter of the MS Society since 2007 when I was first diagnosed at the age of 49.

Your article, “Does Diet Affect MS,” on page 5 of [the Fall 2014] issue of your newsletter is very disheartening to me and prompted me to write.

With all due respect to Dr. Rotstein from Brigham and Women’s Hospital in Boston, her statements regarding the “lack of evidence that overall dietary quality is associated with the risks of multiple sclerosis” is misleading. It is the frequent publishing of such statements by so-called knowledgeable medical professionals that has so many afflicted with this horribly debilitating disease not seeking out nutritional solutions.

The facts are, that hundreds if not thousands of us with MS (and other auto-immune conditions) are being helped every year by nutritional-based remedies. These incredible stories of healing and recovery are documented in books, blogs, and in the media on a regular basis, yet we continue to see articles like the one referenced above, instead of allowing your newsletter to publish true accounts that would offer alternatives and hope to so many.

I have personally been on a life-changing – if not life-saving – journey over the last three years that involved a customized, nutritional program and elimination diet that has completely restored my mobility,

stamina and overall health. This experience has been so powerful that I am soon to complete my certification in holistic nutrition so that I can help get this message out to others.

It is sad that an organization like the National MS Society, considered a trusted resource to the hundreds of thousands suffering with this condition, would allow this information to be buried beneath self-serving “research and facts.”

The NMSS is a wonderful, influential source of information and support for the community you serve, and there are many, many areas in which you serve it well. However, if your goal is to truly help people who have multiple sclerosis, I strongly urge you to consider broadening the scope of what you are publishing on a more regular basis so your membership receives the message of hope that they so desperately need.

Best regards,

Barbara Rodgers Philadelphia, PA


DEAR MS. RODGERS,We appreciate your feedback about the “Does diet affect MS” news brief in our most recent issue of MSConnection. It is important to note that Dr. Rotstein’s statement about not finding any evidence of a connection between diet and developing MS was referring to the results of her study; that may have not been clear due our choice of headline and the way the article was edited. Please accept our apologies.

Thank you for your feedback regarding your wish that we broaden the scope of what we publish. We strive to explore and report on all studies that could be useful or informative to the public. Our stance on complementary and alternative therapy (CAM) is as follows:

Unlike conventional medical treatments that are thoroughly tested and carefully regulated by the U.S. Food and Drug Administration (FDA), most CAM therapies have

undergone very little — if any — scientific study to evaluate their safety and effectiveness. So some forms of CAM may be completely safe for a person with MS while others may actually pose significant risks — by producing significant side effects, over-stimulating the person’s immune system or interacting negatively with other medications a person is taking. Some may provide some benefit for a person with MS while others offer no benefit at all.

Carefully-designed clinical trials are the best way to determine the safety and effectiveness of a particular treatment. Here’s why:

n Because the course of MS is variable, and each person’s symptoms tend to come and go in an unpredictable way, the only way to determine the effectiveness of a treatment is to test it on a large number of people.

n Because most people — regardless of the disease they have — will have a positive response to any new treatment they receive

(even if it’s an inactive substance or placebo). The effectiveness of a new treatment can only be proven by comparing it to a placebo or to another treatment that has already been shown to be effective.

n Because every treatment carries with it the risk of anticipated and unanticipated side effects, the only way to evaluate a treatment’s safety is to evaluate it in a large number of people over a sufficient period of time.

If you decide to explore alternative therapies, we recommend that you keep your physician informed about everything you are taking, don’t abandon conventional therapy, and keep a detailed log of what you take or what is done and any changes you experience. Thank you again for your feedback. We will continue to explore all options in our path as we move towards a world free of MS. n


NEWS BRIEFSEXERCISE, DIET AND SLEEP CAN IMPROVE MS SYMPTOMSNew studies have shown that exercise, sleep and a low-salt diet may be part of the solution for people living with MS. Previously, people with MS were advised against exercise because it seemed to worsen symptoms like fatigue. Researchers now think that the negative effects of exercise are temporary and are outweighed by the benefits such as counteracting depression and improving cognition.Dean Wingerchuk, a neurologist at the Mayo Clinic in Phoenix, explains, “While quitting smoking, getting more sleep and reducing excess salt are general health strategies that are good for us anyway, they are actually making a difference with respect to the behavior of the disease.”

Some researchers are suggesting that salsa dancing, with its multi-directional movements, may be especially helpful for people living with MS. The National MS Society is looking further into this by funding a study being conducted at Brown University.

FDA APPROVES LEMTRADA™ (ALEMTUZUMAB) FOR RELAPSING MSThe U.S. Food and Drug Administration has approved Lemtrada™ (alemtuzumab, Genzyme, a Sanofi Company) as a disease-modifying therapy for people with relapsing forms of MS. Lemtrada is given as intravenous infusions – for 5 consecutive days initially and for 3 consecutive days one year later. Because of its safety profile, the prescribing information indicates that use of Lemtrada should generally be reserved for people who have had an inadequate response to two or more MS therapies.“The FDA approval of

Lemtrada is a significant milestone for people living with relapsing MS in the United States,” said Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer at the National MS Society. “We are pleased that that the voices of the MS community have been recognized and that people with relapsing MS will now have access to a new, needed treatment option.”

DISAPPOINTING RESULTS ANNOUNCED FROM TRIAL OF GILENYA FOR PRIMARY-PROGRESSIVE MSPreliminary results from a large, Phase III clinical trial of Gilenya® (fingolimod, Novartis), an oral therapy approved for treating relapsing forms of MS, suggest that the trial did not slow MS worsening over three years in people with primary-progressive MS. The trial involved 970 people across 18 countries who took either fingolimod or an inactive placebo. According to a Novartis press release,


the study did not show a significant difference between the groups on a combination of disability measures. Further analysis, which is ongoing, may shed light on future trials involving people with primary-progressive MS, for which there are no approved disease-modifying medications.“These preliminary results are disappointing,” commented Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer for the National MS Society. “Hopefully a thorough analysis of the full data from this study will offer insights both for new approaches to treating progressive MS and for improving future trial designs,” he added.Additional large-scale trials in people with progressive MS are ongoing. The National MS Society is pursuing all promising research paths and collaborating worldwide to drive progress in research in progressive MS, and is a collaborative leader in the International Progressive MS Alliance.

NATIONAL MS SOCIETY RESEARCHER WINS STEM CELL PRIZEMarius Wernig, MD, of Stanford University, was awarded the New York Stem Cell Foundation-Robertson Stem Cell Prize for his breakthrough showing that human skin cells can be directly converted to brain cells. He recently received a grant from the National MS Society to further test the feasibility of using converted skin cells as transplantable cells to repair the nervous system.In MS, the immune system attacks and destroys myelin, the fatty substance that surrounds and protects nerve fibers. Promoting myelin repair is a major strategy in MS treatment research. One idea to promote myelin repair is to transplant cells that make myelin, called oligodendrocytes, to provide more replacement cells to the brain. With the grant from the Society, Dr. Wernig will devise ways to generate sufficient numbers of oligodendrocytes that can be

transplanted into the brain to repair myelin. Results from this study could ultimately lead to a way to restore myelin and thus function in people with MS.

CAN A VIDEO GAME HELP RESTORE MOBILITY TO PEOPLE WITH PROGRESSIVE MS?A research trial will test whether virtual kayaking with a weaker arm can improve upper arm function for people with progressive forms of MS. This trial is being funded by a National MS Society pilot research grant, a program to foster innovation and testing of high-risk ideas, to rehabilitation researcher Lynne Gauthier, PhD, at Ohio State University. n

Visit us online at nationalMSsociety.org/research to stay on top of the latest in MS research.


DO-IT-YOURSELF FUNDRAISING EVENTSDo It Yourself Fundraising is an opportunity for people in our area who are committed to the MS movement to raise awareness and critical funds in new and creative ways. There are endless ways to get involved. Host a fundraising event, start a grassroots

fundraising campaign with email or take on a personal challenge of your choice. Every dollar counts in our mission to create a world free of MS. Your dollars will help fund cutting-edge research, drive change through advocacy, facilitate professional education, and provide programs and services to help people with MS move their lives forward.

If you are interested in starting your own event, please contact Maria Oberst, Special Events Coordinator, at 215-271-1500 or [email protected].

Check out pics from some of your recent successful D-I-Y events! n

1. OCTOBEARD ($5,000)

2. UPPER TOWNSHIP BAY ROW ($4,158)

3. GOLF EVENTS: MDMS ($25,000) MANUFACTURERS’ GOLF & COUNTRY CLUB WOMEN’S EVENT ($10,610) MAKE A DIFFERENCE DAY ($3,338)

4. FLIP CUP TOURNAMENT ($1,957)

5. ONE BITE AT A TIME ($900)

3.

1.

2.

4. 5.


Join us for a Walk MS Pep Rally on March 7 at the PPL Center in Allentown, PA or March 8 at the Adventure Aquarium in Camden, NJ. Call 1-800-883-WALK to RSVP.

Plus, get discounted tickets to the Phantoms hockey game on March 7 and enjoy free admission to the Aquarium on March 8.

walkMS.org or 1.800.883.WALK

APRIL 11Wilmington, DE Wilmington Riverfront

APRIL 18Dover, DE Tatnall Building

APRIL 26Cherry Hill, NJ Cooper River Park

Devon, PA Devon Horse Show & Country Fair

Lansdale, PA North Penn High School

Media, PA Ridley Creek State Park

Norristown, PA Elmwood Park Zoo

Sellersville, PA Lenape Park

MAY 2Philadelphia, PA Philadelphia Museum of Art

MAY 3Allentown, PA Memorial Rose Garden

Burlington County, NJ Smithville Park

Long Pond, PA Pocono Raceway

Newark, DE Buffalo Wild Wings

Newtown, PA Tyler State Park

Ocean City, NJ Ocean City Boardwalk

Sewell, NJ Washington Lake Park

West Chester, PA East Goshen Township Park

Wyomissing, PA Gring’s Mill Recreation Area

MAY 29Bridgeville, DE Twilight at Heritage Shores

Long Neck, DE Twilight at Baywood Greens


FOR WALK MS EVENTS IN PA OR NJ: Fax registration forms to 215-271-6122

Philadelphia Office 30 South 17th Street, Suite 800

Philadelphia, PA 19103

FOR WALK MS EVENTS IN DE: Fax registration forms to 302-655-0993

Wilmington Office Two Mill Road, Suite 106 Wilmington, DE 19806

WALK MS: REGISTRATION FORM

Name:

Address:

City: State: Zip:

Phone:

Email address:

Is this an address or name change? Yes No

Date-of-Birth: / /

Employer/School Name:

City: State: Zip:

Work Phone: ( )

T-shirt Size S M L XL XXL XXXL

Connection to MS:

My fundraising goal is $

Team name: Team captain:

Walk site:

Donation Amount: $

I will pay my pledge via: please choose one form of payment

Cash Personal Check | Make checks payable to National MS Society

Credit Card | Choose One: Visa MasterCard Discover AMEX

Account Number:

Exp. Date: / / Signature:

NOTE: In order for your registration to be processed, a waiver needs to be signed. Your local Walk MS coordinator will follow up with you upon receipt of this form.


NEED A RIDE?Friends, family, and caregivers can be great resources for rides to appointments, but in a pinch, there are some new services that you can use – and they are just an app download away.

UBER

Uber is an on-demand car service that allows you to request a private driver through their mobile app. With the tap of the screen, Uber uses GPS to connect you with the nearest driver. With Uber, you will never need to pay cash or swipe your credit card – when you arrive at your destination, the app will automatically charge your credit card (this includes tip). Uber currently operates in Philadelphia and parts of South Jersey. They are always expanding and have announced plans to come to Wilmington, Delaware. Check the app to see if cars are available in your area.

THE UBER APP HAS MULTIPLE OPTIONS FOR GETTING YOU WHERE YOU NEED TO GO:

BLACK CARBlack Car is Uber’s original service. This option sends a high-end sedan to pick you up.

WAVWheelchair-accessible vehicles (WAV) are now operating in Philadelphia. WAV connects riders with licensed paratransit drivers and curb-to-curb service in vehicles that are equipped with ramps or lifts.

UBER XUberX is Uber’s controversial ride-sharing option. This option will request an everyday car to your location. It is controversial because while uberX has been approved in Pennsylvania, it has not been in Philadelphia, where taxis are regulated by the Philadelphia Parking Authority (PPA). The PPA are impounding drivers’ cars and imposing $1,000 fines. Despite that, the service continues to operate in the city.

LYFT Lyft is another ride-sharing option that is nearly identical to uberX. They announced their plans to begin operating in Philadelphia in February, also in defiance of the PPA. There are a few key differences between Lyft and uberX though. With Lyft, riders are encouraged to sit in the front seat, while uberX operates similarly to taxi. Lyft is slightly cheaper than uberX, but riders are asked to tip through the app. Lyft is also known for adorning their cars with a giant pink mustache. However, they say they are abandoning that practice. n

*The National MS Society does not endorse Uber or Lyft’s services.

DON’T FORGET: New Uber users can enter the code NMSS2015 for a free ride (up to $25). Visit uber.com or download the app to sign up for an account.


MANAGING MONEY WITH MSThe New Year is here, and there’s no better time than now to get your finances in order. We asked Clarifi, a non-profit that provides financial counseling to people in the Delaware Valley, a few questions about how people living with MS can manage their money.

WHAT ARE SOME COMMON CHALLENGES THAT CLIENTS WITH MS FACE? Some clients with MS have limited m o b i l i t y , which can lead to d i f f i c u l t y c omple t i n g everyday tasks. Clients may not be able to make an appointment, go grocery shopping, or work a full time job. Limited mobility can increase the cost of everyday expenses, leading to financial stress. For example, having to pay someone to deliver your groceries or picking up a few things from the corner store can lead to paying more for these normal expenses. Adding financial stress to existing health concerns can lead to clients feeling frustrated, overwhelmed, or isolated. An appointment with a financial counselor at Clarifi can help clients alleviate some of that stress by facing the financial issues head on and creating a plan.

WHAT ARE SOME TIPS FOR MANAGING MONEY WITH MS? Clarifi recommends that all clients take a close look at their budget and save for emergencies. This is especially important for clients with MS who might be dealing with unplanned medical expenses. Start by tracking expenses and then build a realistic budget that allows room to save for future goals and unexpected expenses. Having a “rainy day fund” can relieve stress during those emergency situations. Communication is also important: with family members or other loved ones who are involved in day-to-day activities, and also with any creditors or financial institutions that may need to know about any change in circumstances.

WHY IS FINANCIAL COUNSELING IMPORTANT FOR PEOPLE LIVING WITH MS? Aside from budgeting to live within their means and saving for emergencies, financial counseling is also important for people living with MS to help ensure that their credit and debt have positioned them for financial security down the road. For example, financial counseling can help clients ensure their credit score is such that they can obtain appropriate housing or a loan in the future if necessary, or help them confirm that they are on track to be able to pay off their existing debts. Dealing with any health issue comes with added expenses. Addressing financial challenges may help you make sure that you align your values and goals with your spending habits to help you achieve financial stability.

If you’re interested in financial counseling, please call Clarifi at 1-855-FIN-PHIL. n


ASK THE EMPLOYMENT EXPERT

I’M PUTTING MY RESUME TOGETHER BUT I HAVE A GAP OF

15 YEARS FROM THE WORKFORCE. WHAT’S THE BEST WAY TO EXPLAIN THIS TO A POTENTIAL EMPLOYER?

To address a gap in work history on a resume during an interview, it is important to plan ahead. During this time: Have you done some volunteer work that might be

added to your resume to help cover a gap? Have you taken some classes or attended professional education opportunities which would make you more marketable in today’s labor market? During an interview, you can talk about your accomplishments – volunteering, managing your home, raising children, taking courses – without having to disclose that you haven’t been working due to your MS.

If you can’t talk about any of those sorts of activities, some people I have worked with have used general language like, “I had to take some time off to handle some personal matters, but those are settled now so I am ready and able to return to work.” It really depends on your own comfort level in terms of using that type of explanation. As much as possible, the takeaway is to try filling that gap in your resume with any relevant experience, even if unpaid. n

CHRISTINA L. FORSTER, MA, CRC EMPLOYMENT SERVICES MANAGER, PA AND DE


TIPS FOR A SUCCESSFUL INTERVIEWBY CHRISTINA L. FORSTER, MA, CRC EMPLOYMENT SERVICES MANAGER, PA AND DE

So, you’re in the market for a new position and have sent your resume to dozens of companies, when you finally get the call for an interview! Whether it is a phone or face-to-face interview, you need to maximize your efforts at making this a stepping stone towards your next position. Finding work can be stressful for job seekers with disabilities, who may encounter prejudice during their search. Preparation is the key to utilizing an interview as a way to demonstrate your abilities, not your disability.

HERE ARE A FEW TIPS TO HELP YOU PREPARE: DO YOUR RESEARCH! Nothing will set you apart from the competition more than showing that you have taken the time to learn about the organization at which you are interviewing. A good starting point is to research the company’s website and prepare questions for the employers during your interview. Show that you are interested in the position and the company.

DRESS FOR SUCCESS. First impressions matter. Dress professionally when interviewing in person and do not overdo it with cologne or perfume.

BE ON TIME! Nothing is worse than leaving a bad first impression when showing up late for your interview. Leave yourself extra time for the commute and do not arrive more than 15 minutes early. Bring a book or newspaper to read in your car or the lobby if you do arrive extra early.

BRING YOUR RESUME. Have your resume on hand to provide to interviewers. Sometimes they will ask for it as a test, while other times they really need it. Also, have a list of references and their contact information prepared on a separate sheet of paper.

PRACTICE. Compile a list of your strengths and weaknesses so you are organized and prepared when asked questions. Also, look up popular behavioral questions ahead of time and prepare examples from previous work experiences to answer any thought-provoking questions the interviewer may pose to you. You may also want to have a friend or family member help you practice with a mock interview.


PREPARE QUESTIONS! As important as it is to have well-prepared answers for the interviewer’s questions, it is equally important to compile a list of questions to ask the interviewer. The questions you ask show how interested you are in the position, company and field.

LISTEN. When asked a question by the interviewer, really listen to what he or she is saying. If you’re not sure, it’s OK to ask the interviewer to repeat the question.

TO DISCLOSE OR NOT. Many individuals ask if they should disclose their disability during a job interview. The decision is ultimately yours. As a matter of law, you have no obligation to disclose anything about your disability status or underlying diagnosis during a job interview. However, there may be certain circumstances when you may need to mention your diagnosis during the interview process, such as if you need an accommodation. If you decide to disclose, plan for it accordingly by thinking about the consequences of sharing this intimate information with a prospective employer. Remember, if you choose to disclose during an interview, it is important to talk about your abilities, not your disability. This is your time to shine- sell employers on what you can do!

KNOW YOUR RIGHTS. Knowing your rights protects you from answering questions that are illegal or discriminatory. The Americans with Disabilities Act of 1990 bars employers from asking questions that might reveal a disability or mental health issue. You do not have to reveal a disability until you need an accommodation for it. Individuals

with MS may feel nervous about being asked disability-related questions during an interview. Here is a brief rundown of legal and illegal interview questions.

QUESTIONS AN INTERVIEWER CANNOT ASK: n Do you have a disability? n Do you have any pre-existing health conditions?

n How many sick days did you take with your previous employer?

n What medications are you taking, or have taken?

n Are you on any medication?

QUESTIONS AN INTERVIEWER CAN ASK: n Can you perform the essential functions of the particular position for which you are applying?

n How will you perform the job function (if they know you have a disability)?

n What reasonable accommodation will you need (if you have an obvious disability or disclose)?

Overall, these tips, along with a well-crafted resume and an appropriate experience level, should assist you in getting to the next step of the interview process. Remember to follow up with a thank you after the interview, preferably with a hand-written note or by email. Happy job hunting! n


SMILE AND CONNECT1. Tear out this poster along the perforated line.

2. Write in the blank space with black marker and in large print why you connect to the National MS Society and our mission – maybe you connect because it helps you deal with your MS symptoms, or maybe you connect because a loved one has MS and you are committed to helping find a cure. Whatever the reason, here is your chance to share.

3. Take a picture with your poster.

4. Upload it to facebook.com/greaterdelMS or your personal Twitter and Instagram accounts. Don’t forget to tag your post with #iconnectMS

5. If you aren’t on social media, feel free to email a picture of yourself holding the poster to [email protected] and we’ll upload it for you.

2. 4.

1.

3.

5. 7.6.


HELP SPREAD AWARENESSMarch 2 – 8, 2015 is National MS Awareness Week which means it’s time once more to get your orange on! We plan to be in your community again this year with open houses and hope to see a lot of orange during the week. Start a conversation - tie an orange ribbon on a tree, your mailbox, your fence, etc. to show your support and help increase awareness. When someone asks you about the orange ribbons, it is your opportunity to tell them about MS - what it is and how they can help support people and their families living with the challenges of MS. Stay tuned for more information about Awareness Week activities - but for now, get your orange ready! Check out www.MSconnection.org to join others as they connect all across the country.

WHY CONNECT? n Many people still do not know what MS is or what challenges people living with the disease face

n By sharing your “I Connect” image on social media, you can show your friends, family and community how you overcome your MS symptoms, or how you support a loved one with MS

n You also increase awareness of the disease, which allows us to better fulfill our mission to ensure people living with MS can live their best lives while we stop MS in its tracks, restore what has been lost and end MS forever

1. Mollie Burns, MS Navigator2. Jeff Meyers, Bike MS: City to Shore Planning

Team Chair and cyclist3. Louise Savarese, Mass Market Event Coordinator4. Tami Caesar, Chapter President 5. Sasha Aziz, Volunteer Coordinator6. Alison Perch, Digital Marketing Coordinator7. Pat Thieringer, Community Outreach Manager8. Caitlin Smith, Development Coordinator9. Mary H. Thomas, MS Society Volunteer10. Joe Selgrade, Logistics Coordinator, Bike MS

9. 10.

8.


UPCOMING PROGRAMSCall 1-800-FIGHT-MS or visit calendarMS.org for more information or to register for any of these upcoming programs for people living with MS.

MANAGING YOUR MSLiving well with MS requires you to be the driving force in your health and wellness – and we’re here to help. Please join us for Managing Your MS: An update from the National MS Society. This program will be held at four locations (listed below) in the Greater Delaware Valley to make it more convenient for you to attend. To help you find your optimal disease-modifying therapy, leading neurologists will provide an overview of the available therapies and address the benefits and risks involved in making these treatment and lifestyle decisions. Tami Caesar will also discuss the many resources the Society makes available to individuals living with MS and their families. Seating is limited. Be sure to register early.

MARCH 3 • 6:00 - 8:30 P.M.PHILADELPHIA, PAFEATURING DR. JOSEPH R. BERGER

MARCH 7 • 9:30 A.M. - 1:00 P.M.WYOMISSING, PAFEATURING DR. D. GARY KOLVA, DR. CLIFFORD REED AND DR. KELLEY CROZIER

EARLY SPRING • TIME TBDSOUTH JERSEYFEATURING DR. DONALD BARONE

EARLY SPRING • TIME TBDMAIN LINE

MANAGING COGNITIVE SYMPTOMS AND FATIGUE IN THE WORKPLACE FEBRUARY 26 • 8:00 - 9:15 P.M.EMPLOYMENT TELELEARNING CALLCognitive dysfunction and fatigue are two of the most common symptoms impacting people with MS in the workplace, and can pose significant challenges to maintaining employment. Neuropsychologist Dr. Cynthia Sullivan and occupational therapist Tracy Carrasco will discuss how these symptoms may present themselves and share practical ways to manage them on the job. Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot.

SUPPORTS TO HELP YOU FIND EMPLOYMENT MARCH 12 • 8:00 - 9:15 P.M.EMPLOYMENT TELELEARNING CALLEmployment resources vary depending how your MS impacts your ability to work. Samantha Mankin with the Division of Vocational Rehabilitation, Russell Bowe of the Speer Adult Workforce Center, and Adam Streets from Getting Hired Inc. will discuss how to use their resources to find employment opportunities appropriate to your needs. Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot.


GUIDE TO FLEXIBLE AND HOME-BASED JOBS MARCH 26 • 8:00 - 9:15 P.M.EMPLOYMENT TELELEARNING CALLWhat are the latest trends in the work-from-home and flexible job markets? Brie Reynolds from Flexjobs.com will walk through the trends, top career fields and most common jobs available, as well as who’s hiring and how to find these flexible opportunities. Learn how to avoid common job scams and tips for successful job applications. Visit www.nationalMSsociety.org/telelearning or call 1-800-344-4867 to reserve your spot.

EASTER SEALS CAMP FAIRLEE RETREATMAY 1 - 3 • CHESTERTOWN, MDEaster Seals Camp Fairlee is available to all members of the National MS Society again this spring. The weekend of May 1 - 3 has been set aside for us. For additional information or to register, please contact the chapter at 302-655-5610 or 1-800-Fight-MS.

DATE NIGHTMAY 8 (TENTATIVE) • DOVER, DEA dinner and a movie date night is being planned for early May. The location will be the Schwartz Theater in Dover, Del. and the specifics will be worked out in the first quarter of 2015. For now, save the date of May 8th and look for more information on our website in the coming months. n

A FRIEND TO HELP YOU ON YOUR MS JOURNEYConfronting the challenges surrounding a recent MS diagnosis can be extraordinarily difficult. Since many people greatly benefit from strong support systems, our chapter has recently enhanced our newly diagnosed clients’ support networks by introducing a peer mentoring program.

The Peer Mentoring P r o g r a m p r o v i d e s f a c e - t o -face peer s u p p o r t , specifically

tailored to each person. One-on-one connections with carefully recruited and trained volunteers, who have lived with MS for more than three years, will help newly diagnosed individuals find answers to their own questions and concerns. Our goal is to match peers with peer mentors who live in the same geographic area, share common symptoms and have similar life experiences. As someone who is learning how to live with MS, you may find the one-on-one peer connection very helpful as you navigate your unique MS journey.

If you are interested in being partnered with an MS peer mentor to help you navigate this MS journey, please contact the chapter at 215-271-1500. n


ANNUAL MEETING HONOREESCORPORATIONS OF THE YEARNFI INDUSTRIES

NFI is a top sponsor for the Bike MS: City to Shore Ride - but this company from Cherry Hill doesn’t just write a check. They do much

more by providing logistics expertise to ride organizers, helping us move 7,500 people and their belongings along the route. In addition to donating their time and professional know-how, members of the company’s cycling team have raised $380,000 over the past 15 years.

DISCOVER BANK Discover Bank was one of this year’s presenting sponsors for Bike MS: Bike to the Bay. They have been a top Bike MS team for several years, having raised over $75,000 since its

inception in 2010 and they have a large volunteer base that provides tremendous help with the Bike MS registration process. They also provided $20,000 to fund our chapter’s financial assistance program.

FRIEND OF THE MS SOCIETY AWARDThis award honors i n d i v i d u a l s , organizations and corporations that have supported the MS Society’s mission to

create a world free of MS. They are, from left to right: PHILOMENA DOUGHERTY who provides much needed office support; Sallie Price of EASTER SEALS CAMP FAIRLEE, which has generously provided a free semi-annual respite camp; Walt Chiquoine of SAXBYS COFFEE, which has been a rest-stop sponsor for multiple Walk MS events; Stephanie Bailey and Evan Friedkin of the NEWARK JAYCEES, which holds a third party fundraiser entitled “The Shamrock and Roll 5k for MS” and have also volunteered for other events. Not pictured is CNMRI, a large neurology practice located in Dover and Milford which has generously hosted open houses during MS Awareness Week, and THE KENNY FAMILY FOUNDATION/SHOPRITES OF DELAWARE, which provided financial and in-kind support for many of our events.

MARKETING & COMMUNICATIONS AWARD93.7 WSTW, DELMARVA BROADCASTING93.7 WSTW, Delmarva Broadcasting has been a sponsor for many of our events in the last several years including Bike MS: Bike to the Bay, Walk MS, Thanksgiving Day Run/Walk

AN NFI CYCLIST

MS SOCIETY’S LINDA RISK WITH REESE BOGLE OF DISCOVER


and the MSQuerade. They have promoted our events on radio shows, through public service announcements and on their website. WSTW DJs have also attended the MSQuerade, where they have done an excellent job emceeing the evening’s festivities.

NORMAN COHN HOPE AWARDJANINE HARLAM

For more than 20 years, Janine Harlam has led the PNC Bank Thanksgiving Day Run/Walk event. Under her leadership, the event has grown from 1,000 to 3,000

participants and now raises more than $100,000. Janine is the force that drives the success of this event – managing sponsorships, committee members, logistics and community partners. We truly could not do it without her!

THACHER LONGSTRETH AWARDNICK MAIALE

For over 20 years, the Honorable Nicholas J. Maiale, Esq. has been a leading board member with the chapter, both as a finance committee chair and a key

connector between the chapter and the local business community.

DISTINGUISHED VOLUNTEER AWARDSALLISON COIA

Allison Coia is a longtime supporter of the National MS Society, having attended, volunteered, or fundraised for nearly every event we have.

She is also a powerful advocate for those living with the disease and has attended several public policy conferences.

MICHELLE WALLMichelle Wall took on the position of MSQuerade event chair and led the event to great success. Michelle is also a Walk MS Team Captain. Her team, These Four Walls,

raises over $1,500 for the chapter annually at Walk MS: Wilmington Riverfront. n

DELAWARE BOARD CHAIR MARIA MCCABE WITH JANINE HARLAM

NICK MAIALE

ALLISON COIA

MS SOCIETY’S HELEN SERBU WITH MICHELLE WALL


LOCAL VOLUNTEER INDUCTED INTO THE SOCIETY’S HALL OF FAMEDENISE SAVARESEOver 20 years ago, Denise was diagnosed with MS. Her mom had the disease, and when she started feeling nerve pain in her legs, she had an idea what the cause was. Since her diagnosis, Denise has dedicated her time, network, poise and caring attitude to the National MS Society. She has made her mark by leading or co-leading several self-help groups, organizing advocacy projects, mentoring newly-diagnosed individuals, hosting MS service days, rallying volunteers, organizing health fairs and captaining Walk MS teams. n

NATIONAL BOARD CHAIR ELI RUBENSTEIN, DENISE SAVARESE, MS SOCIETY PRESIDENT CYNDI ZAGIEBOYLO

The National Multiple Sclerosis Society depends on the commitment of volunteers at every level of the organization. As one of the nation’s best volunteer-led health agencies, the Society embraces, values and recognizes the work of our volunteers. We can’t fulfill the promise of our mission without you.

Women, men and children of all ages and backgrounds are welcome to participate in our events or lend their professional talents to special projects in our office. The chapter welcomes the diversity that volunteers bring to our vision of creating a world free of MS.

Sign up to volunteer now at volunteerforMS.org


SOCIETY AWARDS COMMUNITY IMPACT GRANTS FOR INCREASED ACCESS TO MS CARE IN UNDERSERVED POPULATIONSThe Greater Delaware Valley Chapter of the National MS Society has awarded a total of $250,000 in grants to the following five organizations:

n St. Luke’s MS Center, to support a social work position at its location in Allentown. This professional serves those living with MS through education, emotional support, access to resources and other vital services.

n Total Rehab and Fitness, located in Cherry Hill, to make physical therapy services available to underserved people living with MS, giving them the chance to take control of their health and wellness.

n UESF, located in Philadelphia, to fund a Housing Stabilization Program, which provides back utility, back and ongoing rent, back and ongoing mortgage, fuel oil and security deposit assistance to eligible persons.

n Good Shepherd, located in Allentown, for its MS Wellness program. This innovative initiative promotes the health and well-being of people living with MS through a variety of activities including education, exercise, and art therapy.

n Magee Rehabilitation Hospital, located in Philadelphia, to fund the MS Healthy Living Program, which promotes wellness in those individuals who are living with MS and who aspire to a healthier lifestyle.

Grant applications are currently available online: main.nationalMSsociety.org/CommunityImpactGrants. Please contact Melissa Bruno with any questions at 215-271-1500 or [email protected]. n


ADVOCACY

LOCAL UPDATESSTATEDELAWARE

n Senate incumbent, Chris Coons, won reelection to the Senate in 2014. Senator Coons is serving his second term.

n The Government Relations Committee resumed monthly meetings in January with an eye on several key issues including accessible parking, transit redesign and strengthening constituent relations.

n The Delaware State Legislature reconvened on Tuesday, January 13.

NEW JERSEY n In November, CARE Act was signed into law. This act requires hospitals to recognize caregivers upon admission to the hospital and to train them on how to care for the patient after discharge. The law goes into effect in May.

n The Christie Administration made changes to Medicaid to help individuals that earn too much for Medicaid but not enough to cover the complete cost of their care. New changes will place any income an elderly or disabled person receives above the monthly Medicaid limit into an irrevocable trust for qualified living expenses and care. Any additional care that the applicant cannot afford will be paid for by the state.

n The newly formed New Jersey Government Relations Committee (GRC) held its first meeting on December 16.

PENNSYLVANIA n On November 4, Tom Wolf was elected to become the 47th Governor of Pennsylvania. Wolf will be inaugurated on January 20 with Mike Stack serving as Lieutenant Governor.

n Members of the State Senate and State House of Representatives elected on November 4 were sworn in on January 6. MS Activists are looking forward to working members of the General Assembly in 2015.

n Following the passage of House Bill 993, the Department of Public Welfare has changed their name to the Department of Human Services. The new name better reflects the range of services that the department provides.

FEDERALPUBLIC POLICY CONFERENCE

n The Public Policy Conference will take place March 9 - 11 in Washington, D.C. An experienced delegation will meet with Federal legislators and their staff to talk about important issues such as MS research funding to expedite the process of bringing MS drugs to market. We will also be discussing access to high quality MS healthcare principles. n

www.nationalMSsociety.org/Chapters/PAE/Advocate-for-Change


GADGET CORNER

VITALITY’S GLOWCAP®

Vitality’s GlowCap® can help you manage your medication through reminders, social feedback, financial incentives and automatic refills. Inside the cap, a chip monitors when the pill bottle is opened and wirelessly relays alerts, through the AT&T Mobile Broadband Network, to you or your caregiver. A push button at the base of the lid makes refills easier than ever.

Find out more at www.vitality.net/products.html

ADVOCATE TO LIMIT OUT-OF-POCKET COSTS FOR SPECIALTY TIER DRUGSIs the cost for your MS disease-modifying drug a barrier to your treatment? Have you stopped taking a prescription drug due to out-of-pocket expenses, even though you have health insurance? Has your disease-modifying drug been placed on a “specialty tier” by your insurance company? Does your health

insurance company require co-insurance on your disease-modifying drug?

If so, and you live in Pennsylvania, you and your story can be part of the solution to lower costs. Pennsylvania MS Activists and the National MS Society are working together to pass legislation that would limit out-of-pocket costs for drugs on specialty tiers for some individuals. We are looking for stories from individuals who have experienced these obstacles to share with policy makers. If you are willing to share your story, please contact Senior Advocacy Manager, Mara Brough at [email protected] or (215) 271-1500 ext. 24104.

Together, we will achieve a world free of MS. Advocacy helps drive research and enhances quality of life, until a cure is discovered. Thank you for joining your voice with ours. n


BECOME A DISTRICT ACTIVIST LEADERHave you met with your elected official and shared how MS affects you? Are you interested in growing this relationship to keep people with MS in mind as legislation is considered? Lead the way in your community by becoming a volunteer District Activist Leader.

As a District Activist Leader, you will build and foster critical relationships with elected officials in your legislative district. You will serve as a liaison between these officials and the Society, helping to develop a reliable grassroots movement across your state and the country.

KEY RESPONSIBILITIES n Take a leadership role in engaging with elected officials via multiple avenues to help foster a relationship between MS activists and elected officials

n Collaborate with your state’s Government Relations Committee

n Attend MS State Action Days and/or Public Policy Conference when possible

n Receive elected officials’ email/mail communications

n Monitor and track the elected official’s district activities and public events

n Attend town hall meetings and other public forums to engage on issues that impact people affected by MS

n Help build the MS movement’s profile of elected officials by providing key biographical data and information to Society government relations staff

n Conduct in-district legislative visits when needed

n Complete ongoing training n Raise awareness of MS policy issues by utilizing multiple media strategies

QUALIFICATIONS n Responsible and reliable n Able to communicate respectfully and use good judgment

n Able to represent MS movement’s position on local, state and federal issues

n Comfortable with public speaking n Strong interpersonal skills n Strong leadership and organizational skills n Good note-taking and ability to follow up n Basic computer skills (Microsoft Word and Excel, internet)

n Interest in growing social media skills to connect with elected officials

n Able to travel to and from district meetings/events


TIME COMMITMENTThis is an ongoing position requiring a time commitment of approximately 10-15 hours per month (some months more and some months less depending on legislative cycles) for a minimum of two years. Regular calls and meetings with Society government relations staff will be required to discuss progress and strategize next steps (in-person or by phone).

EDUCATION AND SUPPORTTraining and support will be provided by Society staff as well as other volunteer leaders.

To volunteer in New Jersey or Pennsylvania, please contact Mara Brough, Senior Manager of Advocacy, PA and NJ at (215) 271-1500 ext. 24104 or [email protected]. To volunteer in Delaware, please contact Debra Veenema, Director of Programs, Services and Advocacy at (302) 655-5610 or by email at [email protected]. n

The Greater Delaware Valley Chapter of the National MS Society is seeking outstanding candidates to join our 2015 MS Leaders Circle, and we need your help. MS Leaders Circle nominees are upwardly mobile professionals in the greater Philadelphia region who want to make a difference in their communities by raising funds to create a world free of MS. Benefits of the program can include: networking, excellent personal visibility, hands on volunteer leadership and so much more.

Visit nationalMSsociety.org/MSLeadersCircle for more information.

leader [lee • der] – noun A person who leads or guides, one who sets precedence, forerunner, luminary, notable, pioneer, principal

PAT CROCE (RIGHT) WITH 2014 LEADERS CIRCLE TOP FUNDRAISER, ALEX PETRAS


MEDICAID EXPANSION The Affordable Care Act, signed into law on March 23, 2010, sought to simplify Medicaid eligibility and provide coverage to all persons under 65 with income below 133% of the federal poverty level (FPL). That means any individual under 65 earning less than $15,521.10 would be eligible for Medicaid. In 2012, the U.S. Supreme Court decision rendered the Medicaid expansion a state option. The MS Society fully supports and has actively advocated for all states to implement Medicaid expansion.

IT IS ESTIMATED THAT 17,000 UNINSURED ADULTS IN DELAWARE AND 297,000 UNINSURED ADULTS IN NEW JERSEY WERE MADE ELIGIBLE FOR COVERAGE DUE TO THE EXPANSION OF THE MEDICAID PROGRAM.

Both Governor Markell (DE) and Governor Christie (NJ) chose to immediately implement Medicaid expansion with coverage starting in January 2014. In Delaware, the Medicaid program is called the DE Medical Assistance Program and is administered through the Department of Health and Social Services. In New Jersey, the Medicaid program is administered through the Department of Human Services, Division of Medical Assistance and Health Services. It is estimated that 17,000 uninsured adults in Delaware and 297,000 uninsured adults in New Jersey were

made eligible for coverage due to the expansion of the Medicaid program. In addition to the income guidelines, all applicants must be a resident of the state in which they are applying for coverage and a U.S. national, citizen or permanent resident. Governor Corbett (PA) chose not to expand Pennsylvania’s Medicaid program but instead put forth his own plan, Healthy Pennsylvania. Healthy PA was approved by the Federal Government and coverage started for eligible individuals on January 1, 2015. Healthy PA differs slightly from traditional Medicaid expansion and requires a premium for individuals with income over 100% of the FPL. Governor-elect Wolf has publically stated that he disapproves of Healthy PA and is in favor of traditional Medicaid expansion. It is still unknown when, or if, any changes to Healthy PA will be made in 2015. Eligible individuals can apply for coverage directly through their states. Contact information for each state can be found below.

DELAWARE: 1-800-372-2022NEW JERSEY: 1-800-356-1561PENNSYLVANIA: 1-800-692-7462 n


REGISTER TODAY!

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OR 215-271-1500

PHILADELPHIA MUSEUM OF ARTSUNDAY, MAY 3, 2015

ZUMBATHON® FOR MS

DANCE YOUR WAY TO A WORLD FREE OF MS


FACE OF MS: KATHLEEN MCSHERRY

AFTER BEING DIAGNOSED WITH RELAPSING-REMITTING MS IN 2002, KATHLEEN MCSHERRY WAS IN

SHOCK. BUT SINCE THEN, SHE HAS MANAGED TO FIND THE HIDDEN BLESSING IN THE DIAGNOSIS, GETTING HER PRIORITIES IN ORDER AND LAUNCHING HER CAREER AS AN ARTIST.

HOW WERE YOU DIAGNOSED WITH MS?I was a creative director at a small agency, and all of the sudden I noticed I was limping. It lasted for two to three days, so I called my family physician to make an appointment. Sure enough, by the time I got into the doctor’s office, it had gone away. But she said she had seen a couple cases of MS recently,

and she sent me over to the hospital to get an MRI. They took the MRI, and then they never gave me the results.

I also had an eye doctor appointment the following week. I had some ongoing eye problems so he gave me an exam and asked about the MRI results. He called my doctor, gave him hell for not getting back to me with the results, and came back and said, “You have MS.”

WHAT WAS YOUR REACTION? I was in absolute shock. I didn’t believe it. I mean I believed it but I was in shock that I had it. I thought it was an awful sentence. I had just bought a new car with a stick shift, and I said, oh my god I’m going to have to get rid of the car - by the way, I still have the car. And everything I imagined I’d have to give up, I didn’t. The only thing I have to stay away from is the triangle that will cause symptoms – and that’s over-tired, over-heated, and over-stressed. But really, it’s the stress that will trigger the symptoms more than anything. I worked at a job that was continuing to give me more and more stress. I landed in the hospital once with an episode about six years ago. And since then, I’m not at the job any longer and I feel great. I thought I can either get through this or fold up, and give up, so I decided to get through this.


WHAT DID YOU KNOW ABOUT MS BEFORE YOU WERE DIAGNOSED? Nothing, I knew nothing about MS. I had a lot of misconceptions about it. But the minute I was diagnosed with it I went home and went on the internet and started looking around. And started to understand what it is. I talked to the nurses and my doctor about it. I really respect my doctor, so what she says is what I do.

HOW DO YOU DEAL WITH YOUR SYMPTOMS? I do assemblage s c u l p t u r e . You can take a look at my website, www.mcsherr ya r t .com. I did, what I called the “Art of Acceptance” work, about dealing with the fact that I had MS and how it felt. And that really helped me psychologically. Although I have MS, it’s not top of mind for me. I just get through my life, and I deal with it. Creating those art pieces, which I don’t do anymore, got me through a hard time.

When I first started creating my art, I thought “there’s nothing I can do about it.”

The diagnosis is what the diagnosis is. So why not turn it into something positive. That’s the only choice I have. If I could say, the choice was not to have it, I would have picked that, but that was not on the table of choices. My grandmother used to say, “If you can’t do one thing, do the next best thing.” So the next best thing was for me to follow my doctor’s orders, create art, and make something good out of it.

WHAT IS YOUR ADVICE TO SOMEONE WHO IS NEWLY DIAGNOSED? Early on I would think that my MS would turn into progressive. And I had to stop myself because that hadn’t happened yet. Deal with what happens when it happens. Don’t go down that road. If I had gone down that road, I would have wasted 12 years of worry, for nothing. You might as well live life as good as it is. In some ways, it was a blessing. It helped steer me back to my art, which I’m doing full time now. If you can get into something that you’re passionate about, you can avoid wasting time on negative thoughts that are not going to be helpful to anybody, especially you. n

Free Matter for the

Blind or Handicapped

30 South 17th Street, Suite 800 Philadelphia, PA 19103

ADDRESS SERVICE REQUESTED

1-800-FIGHT-MS n nationalMSsociety.org

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MSCONNECTION NEWSLETTERPENNSYLVANIA & SOUTH JERSEY€¦ · losing her health insurance, which means she can afford her daily medication. A man in Pike Creek, DE clicks “share”