PA Keystone MS Connection, Spring/Summer 2015 by Jennifer Staab

SPRING/SUMMER 2015 PENNSYLVANIA KEYSTONE CHAPTER

MS CONNECTION NEWSLETTER SPOTLIGHT ON SAFETY RATE YOUR MATE, PAGES 10-11

INSIDE 04-05 07 THIS ISSUE

LIVING WITH MS: LIVING WITH MS: YES YOU CAN STORIES OF A DANCE! FATHER

12-13 14-15 RESEARCH: THE LATEST ON PREGNANCY AND MS

ADVOCACY: PUBLIC POLICY CONFERENCE

2 NATIONAL MULTIPLE SCLEROSIS SOCIETY

MS CONNECTION: SPRING/SUMMER 2015

FROM THE BOARD PRESIDENT, WILLIAM SHRADER

Visit BikeMS.org and use the code “REALRIDER” for $10 off any of the four PA Keystone Rides’ registration fees!

As I write this, our MS Walks are wrapping up, and I am thankful for the awesome weather we had for those events. I didn’t make it to all of them, so if by chance your weather wasn’t so good, I’m sorry. Overall, it appears our participation is up and fundraising is on par with last year.

Pennsylvania Keystone Chapter 1-800-344-4867 Pittsburgh Office 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233

And now, we turn our attention to Bike MS. With 4 rides taking place over the next four months, there is little time for us to catch our breath. Up first is our Escape to the Lake, Presented by FedEx Ground on June 13th, then we follow that up with the Keystone Country Ride on July 18th. There are big changes in store for riders participating in the Mason-Dixon Challenge, presented by Capital BlueCross on August 22nd, and I can’t wait to hear the feedback. From what I have heard so far, the riders are just going to love this event. Finally, we finish off the Bike MS season with the Cook Forest River Ride, presented by Seneca Resources on September 19th. What a busy season for the staff and volunteers who will put in hours upon hours of effort to ensure these are all first class events for our participants, my hats off to them in advance.

Escape to the Lake 2015

Chairman: William Shrader Chapter President: Anne Mageras Editor: Debbie Garrison Design: Jennifer Skinner

June 13-14, 2015

Are you a bike rider? We are offering something new this year as we celebrate milestone anniversaries for three of our rides. If you ride in Escape to the Lake or the Keystone Country Ride and you raise $1,000 in either ride, we will waive the minimym pledge amoutn for the Mason-Dixon Challenge or Cook Forest River Ride. Personally, I am looking to see who will step up and decide to participate in all four rides. I am challenging the PA Keystone Chapter staff to find a way to recognize such an accomplishment. Of course, my hope is those accepting the challenge will also be great ambassadors of the Chapter and the Society and will stand tall when it comes to fundraising as well.

© 2015 National Multiple Sclerosis Society, Pennsylvania Keystone 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.

PLUS ONE ATTITUDE, DO YOU HAVE ONE? WE DO!

BECOME A REAL RIDER OF

Harrisburg Office 2000 Linglestown Rd, Ste 201 Harrisburg, PA 17110

NATIONALMSSOCIETY.ORG | 1-800-344-4867

» 4 AWESOME RIDES » REGISTER NOW AT BIKEMS.ORG Bike MS: Keystone Country Ride July 18 – 19, 2015 2 day, 150 mile ride Start/Finish: Hollidaysburg, PA Overnight: State College, PA Ad_MS_FP_May2015.indd 1

Bike MS: MasonDixon Challenge August 22-23, 2015 2 day, 150 mile ride Start/Finish: Liberty Mountain Resort & Conference Center

Bike MS: Cook Forest River Ride September 19, 2015 1 day ride 35 or 60 miles Location: Cook Forest State Park, Cooksburg, PA

4/10/15 4:05 PM

At our board meeting in April, I challenged the Board as well as the Chapter Staff, to approach everything they do for MS with a Plus One attitude. It is very simple really: can you raise one more dollar, volunteer at one more event, help one more person with MS before you leave for the weekend, etc. I am sure you get the idea. Now, my challenge to you, no matter your connection to MS: can you approach what you do for or with the Society with a Plus One attitude? But what if you have MS? Yes, you can participate too. Say one more Thank You to a care giver, squeeze in one more minute of exercise, or spend just one more minute focused on your own well-being. That leads me to the Society’s Wellness Initiative. People living with MS identify wellness as a high priority in their lives. They want to know what they can do today – particularly related to diet, exercise and emotional wellness – to feel and function at their best. In addition, they want the support of knowledgeable healthcare professionals who are armed with accurate information about wellness interventions, as they pursue their wellness goals. At a recent meeting convened by the National MS Society, people with MS, healthcare professionals, researchers and Society staff summarized continued on page 4

MS CONNECTION: SPRING/SUMMER 2015

continued from page 3 what is currently known about diet, exercise and emotional issues in MS; identified key questions to be answered in each of these areas, along with the research gaps and challenges to be addressed in order to arrive at the answers; made specific programmatic recommendations to ensure that people living with MS are getting the personalized support and information they need to achieve wellness; and outlined next steps to move this important priority forward. Look for future updates about this exciting initiative. As we move into the second half of our first year as the PA Keystone Chapter, we have accomplished much, but still have more to do. Our events season is in full swing, and it won’t be long until the budget season is upon us for FY16. I hope that we are meeting the needs of each and every person affected by MS, as we continue to search for a way to STOP the effects of MS, RESTORE the damage done by MS, & END this disease once and for all. We are making progress, and I am sure it won’t be long now. Until then, we (the Society, Chapter, and me personally) will be there to help. n National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898

BE AN MS ACTIVIST! We are people who want to do something about MS NOW. Become an MS Activist today! For more information on how you can become an MS Activist contact: Mara Brough, Senior Manager of Advocacy, PA & NJ at mara.brough@nmss.org or visit our website at MSPAKeystone.org

UNIQUE WELLNESS OPPORTUNITY FROM THE CHAPTER PRESIDENT, ANNE MAGERAS

The Pennsylvania Keystone Chapter has been at the forefront of the wellness initiative by offering aquatics, yoga and fitness classes throughout the Chapter area. The Chapter also supports memberships at YMCA facilities and health & wellness clubs. The Chapter was pleased to offer a unique Wellness opportunity in partnership with Yes You Can Dance! for the first time this past Spring. Please read further for exciting information on Yes You Can Dance! n

DANCE CLASS FOR MULTIPLE SCLEROSIS

YES YOU CAN DANCE!

Yes, You Can Dance! is a non-profit organization located in Pittsburgh, whose mission is to enhance the physical and emotional well-being of individuals and communities through social dance experiences. Our goal is to facilitate access to dance particularly to those with intellectual and physical disabilities. For the past 4 years, we have provided very successful programs for both the aging population and for young adults with special needs and have witnessed the tremendous benefits in quality of life for these individuals. Because dance has been shown to positively impact so many facets of life including physical functioning, we now want to expand our reach to working with populations with physical

NATIONALMSSOCIETY.ORG | 1-800-344-4867 disabilities caused by chronic degenerative diseases, such as those experienced by people with multiple sclerosis. A study published in the New England Journal of Medicine in 2003 (J Verghese) reports that dance is associated with a reduced risk of dementia—the only physical activity out of those studied to do so. While physical activity is important for everyone, particularly for those with chronic disease, not everyone can run a marathon. It is imperative, however, that people find a physical activity in which they can participate and enjoy doing…”enjoy” being the key. Dance not only provides a form of physical exercise, but also a fun, social experience, and we believe, is a stimulus for positive neuroplastic changes, capable of improving both physical and cognitive functioning, while at the same time improving quality of life. To extend our reach into populations with physical impairments, Yes You Can Dance! launched a pilot ballroom dance class for people with MS. This class ran for 6 weeks, one class per week, each class lasting one hour. The classes were held in an accessible facility in the Physical Therapy Department of the University of Pittsburgh. The class was run by a professional dance instructor with experience in working with individuals with physical disabilities and assisted by 6-8 volunteer dance mentors who have undergone a comprehensive mentor training program. Participants were then paired with these competent mentors, who provided individual

5 attention and support to their partner for the duration of the class. Participants learned ballroom dance, which involved dancing with a partner and they were able to practice new and challenging moves in a safe environment, as their mentor/partner was there to provide physical support. The participants met the following critieria: (1) must have a diagnosis of relapsing remitting MS, and (2) are, in most circumstances, able to ambulate on even ground without an assistive device, but may require a cane on uneven surfaces. Our hope was to document improvements in both physical functioning and quality of life in response to participation in this 6 week class in ballroom dance. Ultimately, we hope that participants will continue to practice ballroom dance by continuing to take lessons, and/or attending social dance events in the Pittsburgh community. We plan to offer this type of wellness class again for a 12 week session later this year, Saturday mornings from 11:00 am – Noon, in the same location to accommodate more participants. Class size will be limited to 12 participants. The cost for the class will be $12.00 per session, if a participant preregisters, or $15.00 per class if participants pays per class. The Chapter will contribute to half the cost of the session. If you have an interest in participating in the class, please go to www.yesyoucandance.org and click on the link for the MS Dance Class or call 412-341-1286 for more information. n

MS CONNECTION: SPRING/SUMMER 2015

LIVING WITH MS: UPCOMING TELECONFERENCE MS SEMINARS, BLOOMSBURG Presented by: Dr. Douglas Nathanson, Neurologist, Geisinger Wyoming Valley Register today at MSPAKeystone.org for June 18, 2015: Epidemiology July 9, 2015: Stem Cell Research TBA: New Directions in Research & Medication The Links at Hemlock Creek, 55 Williamsburg Boulevard, Bloomsburg For questions or to register, please contact Susan Guinter at 1 800-344-4867 or Susan.Guinter@nmss.org Thank you to Biogen Idec for their support of this program.

2015 Telelearning Program Join our free telelearning series for information and guidance on current matters essential to living one’s best life with MS. Featuring different topics with expert(s) presentation by phone and online including open Q&A: GENDER DIFFERENCE IN MS: • Tuesday, July 21, 2015: 7 pm • Thursday, July 23, 2015: 10 pm PREPARING FOR MS DOCTOR VISITS: • Tuesday, September 15, 2015: 7 pm • Thursday, September 17, 2015: 10 pm Visit www.nationalMSsociety.org/telelearning or call 1 800-344-4867 to reserve your spot. n

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. To register call 1 800-344-4867, or visit nationalMSsociety.org/knowledge.

KEEP S’MYELIN Keep S’Myelin is published quarterly by the National MS Society for children 5-10 years old with a relative who has MS. The newsletter contains games, fun, and information. Call the Chapter at 1 800-344-4867 or email keepsmyelin@nmss.org.

NATIONALMSSOCIETY.ORG | 1-800-344-4867

LIVING WITH MS

STORIES OF A FATHER BY THERESA MOORE

Fraser Robinson III never let multiple sclerosis get in the way of living a full and meaningful life. That attitude is part of the legacy he left to his two children, ESPN broadcaster Craig Robinson and First Lady Michelle Obama. “People ask me all the time, ‘What did your parents do?’ and they look at my sister Michelle, and they look at me. I tell them our parents never held us back. They never let MS hold us back.” Robinson told this story to 700 guests at a fundraising luncheon for the National MS Society that raised $350,000 for research, programs and services for people affected by MS. The elder Robinson was diagnosed with MS when Craig and Michelle were very young. Although their father walked with a pronounced limp that progressed over the years, they never thought of him as being anything less than fully able to work, play and enjoy life. Regaling the crowd with anecdotes of growing up with Michelle - “a health nut, even back then” - Robinson recalled that his dad never missed more than a few days working the

CRAIG AND MICHELLE WITH THEIR PARENTS, FRASER AND MARIAN swing shift at the Chicago Water Department and was always there as a steady presence in his family’s lives. “I do not know where I would be if I hadn’t seen my dad battle this disease with such courage and with such grace. I don’t know who I would be,” he said. “In a funny way, MS has had a profoundly positive effect on my life.” n Theresa Moore is a regular volunteer for the Society. Originally published in Greater Northwest’s MS Connection newsletter. The National MS Society’s Family Matters group at www.MSconnection.org is an online community for everyone - children, brothers, sisters, parents or other relatives of people with MS - who are affected by life with the disease. Visit www.nationalMSsociety.org and search for “Family Matters,” or call 1-800-344-4867, to access videos, care partners guides, and a range of materials for children and teenagers affected by MS.

8 LIVING WITH MS

GOING SOMEPLACE NEW

MS CONNECTION: SPRING/SUMMER 2015 next—or about resting to recuperate from the fatigue that multiple sclerosis causes. So I cheerfully talked Colin and Daisy into the car and trekked 50 minutes north to the Ledges, as people here in Des Moines, Iowa, call them, because I hadn’t been there before. To me, that qualifies as travel. And I have what you might call a travel addiction.

BY KENDRA L. WILLIAMS

I’m about a half-mile down the wooded Lost Lake Trail when I start to question what I’m doing here at Ledges State Park. Prudence, my shiny purple walker, rumbles over the gravel and through the woods on this supposedly “accessible” trail while my tired 8-year-old son Colin whines for a snack. Our fishing pole flops in my walker basket, and my rambunctious black lab, Daisy, tugs on her leash. Remind me again why I thought this was a good idea?

KENDRA EXPLORES AN “ACCESSIBLE” TRAIL Because it’s Saturday. It’s not terribly hot or rainy (yet). And life is about more than spending weekends volleying from one big box store to the

FINDING A BETTER WAY When the Mayo Clinic announced that I had primary-progressive multiple sclerosis earlier this year, my disease was in free fall and my job as a senior travel editor for a monthly magazine ended. I was losing my ability to walk and to write, and my memory was slowly turning to mush. But traveling? Traveling would still be a part of my life, even if I had to do it differently. So that’s how I ended up at the Ledges, where soaring sandstone bluffs stand in stark comparison to Iowa’s rolling hills of corn. Able-bodied visitors climb wooden steps to lookout points and wade in shallow streams that snake through the park. For those of us who need four wheels, it’s a little trickier. The accessible trail winds through pretty woodlands—but leads to a lake surrounded by tall reeds and no beach. A bit of a letdown, when I think of the physical energy I spent to get there. Surely there is a better way to enjoy this park. I guide the car down the road that leads through the canyon. The speedometer reads about 20 mph as I gaze up at the cliffs and glance at the streams that run across the road after a good rain. A handful of kids line the pavement, hoping cars will speed up and splash them. I oblige and wave as a sheet of water douses them. I pull my car over and get out. Families wade through the

NATIONALMSSOCIETY.ORG | 1-800-344-4867 streams, stopping to pick up rocks, look at frogs, or watch schools of minnows swirl through the water in perfect unison. Without my husband’s steady hand, I don’t attempt wading far down the stream. But Colin takes Daisy, both of them happy to get wet and muddy while I watch and snap pictures. And that was it, really. A few hours. A few photos. A few memories. It cost me nothing but gas, and Colin and I got to see someplace new. Breathe in the fresh air. Feel the cool water on our feet. Connect with kids who otherwise would be home begging to play video games. Let go of the week’s stressors and center our minds. Travel does all of that, and more, and it doesn’t have to be an expensive trip or an itinerary that would make the D-Day invasion look slapdash. It happens every time you leave your home and go to another place. n Kendra L. Williams is a longtime writer and editor and the founder of www.MStravels.org, a blog about the ups and downs of accessible travel. She lives in West Des Moines, Iowa. Originally published at www.MSconnection. org/blog. Visit www.nationalMSsociety. org/travel for tips and ideas for planning your next trip.

LIVING WITH MS: AQUATICS, YOGA, PILATES, TAI CHI, FITNESS PROGRAMS Physical activity is something people with multiple sclerosis (MS) can do to improve their overall health and well-being. Studies show that moderate aerobic exercise can improve cardiac health, stamina, and mood, and may help manage symptoms like fatigue, weakness, and bladder and bowel difficulties. Stretching exercises can relieve stiffness and may improve flexibility and mobility. To learn more about these programs in your area, please call Colleen Spiegler at the Pennsylvania Keystone Chapter at 1 800-344-4867 ext 63211 or email her at colleen.spiegler@nmss.org. n

LIVING WITH MS: FINANCIAL WELLNESS PROGRAM This eight-week program is designed to help individuals find financial stability, by helping you understand ways to better manage your expenses and spending, and by helping you familiarize yourself with better budgeting methods. Additionally, this program will expose individuals to various community organizations, which are accessible for additional help and resources. Through this program, individuals will make a step toward financial independence in a more tangible and effective manner. To learn more about this free and voluntary program, please call Katie at 1 800-344-4867 ext 63223 or email her at katie.serwa@nmss.org. n

10 LIVING WITH MS

MS CONNECTION: SPRING/SUMMER 2015 The following questionnaire is a guide to help you think about safety in your relationship. If you are involved in an abusive relationship or want more information, call the Chapter at 1 800-344-4867 ext 63202.

16.

Have you threatened to kill yourself if your mate leaves you?

17.

Have you become secretive, ashamed or hostile toward your parents or friends because of your relationship with your mate?

18.

Do you call your mate derogatory names or put her/him down?

19.

Does your mate prevent or try to prevent you from going to medical appointments, therapy, work or school?

20.

Do you accuse your mate of cheating?

21.

Do you avoid seeing friends or family because of your mate’s reaction?

22.

Do you demand to know how your mate spends the day or where he/she goes when you aren’t together?

SPOTLIGHT ON SAFETY

RATE YOUR MATE - Check all that apply

BY SHERIE LAMMERS

Are you frightened of your mate’s temper?

Are you jealous and possessive?

re you afraid to disagree with your mate A because of his/her reaction?

o you have a “bad” temper? Is your mate D often the target of your temper?

o you make excuses or apologize for your D mate’s behavior?

Do you make degrading remarks about your mate or about his/her disability?

Have you been frightened by your mate’s temper or violence?

23.

Do you become violent when you drink and/or use drugs?

Has your mate hit, kicked or shoved you or thrown things at you?

24.

Have you been accused of flirting or having sex with others?

Have you thrown or broken things that are important to your mate?

25.

10.

Have you hit, pushed, kicked or otherwise injured your mate?

Has your mate ever threatened to use your MS against you – with your employer, child custody, etc?

26.

Have you ever threatened to use your mate’s MS against her/him?

27.

Has your mate been supportive of you if you’ve needed assistance, accommodations, paid help at home?

WHAT IS ABUSE? Abuse occurs in one out of four relationships. Some studies suggest the occurrence of abuse greatly increases in a relationship if one partner is living with a disability. There are many types of abuse, but some examples include name-calling, isolation from family or friends, inadequate or lack of access to medical or attendant care, withholding medications, overmedicating, threats to harm or to place in a nursing home, hitting, pushing, punching, and painful or forced sex. Abuse begins with subtle acts of control that increase in frequency and severity during the course of the relationship. In fact, two words define abuse – power and control. Although anyone may be at risk of abuse, people who have physical, developmental and/or cognitive disabilities may be at even greater risk. According to a 1994 study conducted by Dr. Richard Sobsey, women with physical disabilities are more likely than other women to be victims of domestic violence (Sobsey, 1994). Though the majority of victims of violence are women, men can be victimized, too. More recent studies suggest that men who live with a disability experience abuse at a greater rate, similar to that of women who live with a disability.

11. 12.

13.

Have you been forced or pressured to have sex? Have you ever threatened to institutionalize your mate or to send your mate to a nursing home? Are you asked to justify everything you do, every place you go, or how you spend your day while your mate is away or at work?

14.

Have you forced your mate to have sex?

15.

Have you been afraid to say no to sex?

NATIONALMSSOCIETY.ORG | 1-800-344-4867

28.

Have you prevented, denied or dissuaded your mate when he/she has sought assistance, accommodations or has desired additional help in the home?

Number of Odd____

Number of Even____

If you circled three or more odd numbers, you should: • • • • •

Recognize that you are at risk Plan to increase your safety Talk to family/friends Call the police or other authorities Talk to a counselor, call the National Domestic Violence Hotline at 1-800-799SAFE for help nearest you • Find out about safety options and other Chapter services by calling the 1 800-3444867 ext 63202 If you circled three or more even numbers, you should: • Recognize that you are putting your mate at risk • Talk to a healthcare professional, family member or friend for options to contributing to and living in a healthy relationship • Find out about counseling and other options by calling the Chapter office at 1 800-3444867 ext 63202 • Respect your mate, respect yourself – CHOOSE NOT TO ABUSE n ADVERTISEMENT T he L if t P rofessional

AU T H O R IZED D I S T R I B U TO R C H EN E Y S TA I R & W H EEL C H A I R L I F T S

B ar r ie r Fre e St air lif t s 275 Cur r y H ollow Road Pit t sb urgh , PA 1523 6

412- 653 - 6 45 0 1 - 8 0 0 -28 8 - 5 6 2 5 FA X 412- 653 - 6 415

MS CONNECTION: SPRING/SUMMER 2015

LIVING WITH MS: COPING WITH STRESS PROGRAM This program, which was created by UPMC Psychiatrist Dr. Bruce S. Rabin, will teach you how stress affects your mental and physical health and the course of multiple sclerosis. As you know, individuals who have this disease experience the same stresses that other people do; however, there are additional stresses that are unique to MS patients that are related to having a chronic disease. To help you achieve better quality of mental and physical health and potentially reduce your MS symptoms, you will take a journey where you will learn about stress, the use of behaviors that will improve your ability to cope with stress, and stress management techniques. To learn more about this free and voluntary program, please call Katie at the Pennsylvania Keystone Chapter at 1 800-344-4867 ext 63223 or email her at katie.serwa@nmss.org. n

EXERCISE Studies of people living with multiple sclerosis have shown that exercise can help with fatigue and depression, improve strength and result in increased participation in social activities. The PA Keystone Chapter may have an exercise/wellness program that’s right for you! Visit MSPAKeystone.org to find your program!

RESEARCH

THE LATEST ON PREGNANCY AND MS BY JULIE STACHOWIAK, PHD

I was thrilled to attend the teaching course on pregnancy and multiple sclerosis during the 2014 Joint meeting of the Americas and European Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS-ECTRIMS). When I conceived my twins nine years ago, there were fewer therapies available and some doctors were still recommending that women with MS not have children. While today there are still no concrete guidelines on how a woman with MS should be guided through pregnancy, enough data has been gathered that the following recommendations were presented:

BEFORE TRYING TO CONCEIVE:

• It is important to discuss with your doctor and your family the impact that MS will have on your ability to parent and the support system that you can call on. In addition, many people are very anxious that they may pass MS along to their children. To clarify this risk: If just one parent has MS, the risk is still very low (about 1-2 percent) that the child will develop MS. • If you are on a disease-modifying therapy, ask your doctor what the recommended “wash out” period (a period of time without active treatment) is for your medication. Based on data, many doctors are recommending a very short amount of time

NATIONALMSSOCIETY.ORG | 1-800-344-4867 before trying to get pregnant. Importantly, it is recommended that men on mitoxantrone and teriflunomide also stop these meds before trying to father a child. NOTE: Please talk to your doctor about when to stop your meds, as different medications carry different recommendations. • If you are having relapses, it is recommended to try to stabilize them for 6 to 12 months before trying to conceive. Your doc may want to put you on Tysabri for that time (although this may increase your risk that you will have a relapse when you stop). Other approaches are pulse steroid therapy, where a woman is given Solu-medrol when she is menstruating (knowing she won’t conceive during this time), then trying to conceive during the following month.

WHILE PREGNANT:

• If you get pregnant while taking diseasemodifying therapy, DO NOT PANIC! Data shows that most of disease-modifying therapies do NOT increase the risk of miscarriage or birth defects. If you become pregnant while on one of the MS medications, immediately contact your doctor to find out what he or she recommends. • If you have a relapse during pregnancy, you can be treated with Solu-medrol or IVIG, as these do not appear to present any danger to the baby.

AFTER DELIVERY/WHILE BREASTFEEDING:

• Be aware that women with MS are at a higher risk for postpartum depression. If you feel sad or have little interest in your newborn, seek professional help.

• There is no evidence that MS impairs fertility. However, some women or their partners with MS can experience sexual dysfunction, which can limit frequency of sex. While it is common sense, remember that you need to have sex to conceive a baby (unless you are undergoing some form of assisted reproduction technology treatment). If you are doing it the “old-fashioned way,” and struggling with sexual dysfunction, consider finding a therapist who can help.

• If a woman has not had a relapse in the year before getting pregnant (or during pregnancy), she can breastfeed. A recent meta-analysis showed that women who breastfed had slightly fewer relapses.

WHEN TRYING TO CONCEIVE:

Bottom line: Things have become much clearer and less scary since I was pregnant. Your neurologist should be a partner when you are considering trying to start or expand your family, with the goal of making sure that you have the safest pregnancy possible for you and your child.n

• It is very important that you get pregnant as soon as possible after you stop your disease-modifying therapy. One recommendation is that women practice methods for predicting ovulation (taking basal temperature, monitoring cervical mucus, etc.) before stopping meds, so they know when their optimal times for trying to conceive are. If you do not get pregnant within 3 to 6 months, your doctor may recommend that you seek fertility treatment (as opposed to waiting the usual 12 months).

• If a woman had high disease activity before getting pregnant or during pregnancy, it is recommended that she begin taking MS medication within 10 days of delivery.

Julie Stachowiak, PhD, is an epidemiologist, author of The Multiple Sclerosis Manifesto, and a person living with MS. Originally published at www.MSconnection.org/ blog.

14 ADVOCACY

MS CONNECTION: SPRING/SUMMER 2015

for diseases like MS by identifying factors related to environment, medical practices, and lifestyle variances to name a few. They also asked members to cosponsor and pass the Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act (H.R BY MARA BOUGH 1516/ S1013). This bill creates a separate benefit category under Every year hundreds of MS Activists Medicare for CRT, protecting and and Society staff from across the MS Activist, John Platt and MS Specialist, improving access to these customized country travel to Washington, DC Brian Sibenac from the 2015 PPC products so that people can remain to attend the Society’s annual independent and be active members Public Policy Conference (PPC). The conference of their communities. It also removes the “intook place over three days in March with two home” restriction so that products used outside days of educational programing and one day on the walls of one’s home will be covered. Capitol Hill. This year the Pennsylvania Keystone Chapter had six dedicated volunteer activists join In addition for asking support on these two pieces numerous staff members at PPC. Activists heard of legislation, MS activists were also asking for from experts on how to tell their stories to win additional funding for MS research. We asked the hearts, minds and votes of lawmakers and Congress to fund the National Institutes of Health they also learned about the political climate in (NIH) at least $32 billion in fiscal year (FY) 2016. Washington. Four federal advocacy priorities were The NIH led to advancements in MS detection discussed and activists took to Capitol Hill on and treatment but MS funding in particular has March 11th to spread our message. Activists held seen significant decline in NIH funding over the nearly 400 meetings with members of Congress last four years. We asked Congress to fund the and their staff, including 19 with Pennsylvania MS Congressionally Directed Medical Research representatives. Programs (CDRMP) at $10 million in FY 2016. The CDMRP funds studies that increase Activists asked members to cosponsor and pass the Advancing Research for Neurological ADVERTISEMENT Diseases Act of 2015 (H.R 292/ S849). The bill will mandate that the Centers for Disease Control and Prevention track the incidence and prevalence of neurological diseases, including With a strong local focus, we aim to be the most multiple sclerosis. By capturing and compiling responsive and innovative complex wheelchair this data, we will be able to identify pockets of company to do business with. prevalence, demographic data and target funding 120 Purity Road  Penn Hills, PA 15235 412.749.4600 phone to these areas for further research and analysis. 800.600.5933 toll free This new data system could one day lead to a cure

PUBLIC POLICY CONFERENCE

NATIONALMSSOCIETY.ORG | 1-800-344-4867 knowledge about the cause of MS, improve assessment of the disease and will lead to expanded treatment options. These dedicated streams of federal funding for biomedical research provides resources to attract new scientists to the field and moves both science and research forward at a faster pace. We made great impact on the Hill! We gained dozens of cosponsors on the Advancing Research for Neurological Disease Act of 2015 and secured lead sponsors of the Senate version of the bill – including Senator Casey from Pennsylvania. In addition, we gained numerous supporters for the Ensuring Access to Quality Complex Rehabilitation Technology Act and signatures on the NIH Dear Colleague funding request letter. We had a record high number of members of Congress show their support for the MS CDRMP letter by signing the Dear Colleague letter and submitting programmatic funding requests. Overall, the 2015 Public Policy Conference was an amazing experience for all involved but there is still work that needs to be done! We are continuing to advocate for policies and programs that benefit people with MS and their families. If you interested in learning more about our legislative priorities or becoming a MS Activist please contact 215-271-1500 or takeaction@ nmss.org. n

MS Awareness Night with the State College Spikes Sunday June 21st 2015 $10.00 per ticket 6:05 p.m. is game time Gates open at 5:00 p.m. Sit and relax on the third base line bullpen and enjoy America’s favorite pastime as the State College Spikes take on the Williamsport Crosscutters! Cheer for your favorite team and meet new friends at our MS Awareness Night at the stadium. Accessible seating is available. Ticket price includes a food voucher good for one hamburger or hot dog, chips and a soda. Registration deadline: Monday June 15, 2015. For tickets please call: 1 800-344-4867 or visit MSPAKeystone.org ADVERTISEMENT

DID YOU KNOW? National MS Society programs are available to anyone affected by MS. To learn about programs available to you, visit MSPAKeystone.org and select “Resources & Support”

16 WAYS TO GIVE

THE POWER TO CHANGE The Lombardi Party began in 2006, when Kevin Lombardi walked 50 miles in Challenge Walk MS on Cape Cod to support family members who had been diagnosed with multiple sclerosis. Today, the Lombardi Party has become a family tradition, with a network of supporters coming together each year. Kevin Lombardi agreed to talk with the National MS Society about his commitment to the MS movement.

Q: HOW HAS MS AFFECTED YOUR FAMILY?

A: My family has the unenviable distinction of three generations of MS diagnoses. My mother, Carmella, fought a very silent battle with the disease and passed away three years ago as a result of complications from MS. My older brother Carl was diagnosed about 13 years ago at the age of 49 and his daughter and my niece, Melissa, was diagnosed almost three years ago. I also have two first cousins–Debbie and Roseann– who live with MS. When I first learned of my mother’s MS, it took a while to resonate with me. I was just an average person with zero ability to change anything–or so I thought.

Q: HOW DID YOU FEEL WHEN YOUR BROTHER AND NIECE WERE DIAGNOSED?

A: I am angered by this attack on my family. I am fearful it won’t stop at my niece so I am committed until we end MS. That is one of the

MS CONNECTION: SPRING/SUMMER 2015 many lessons I have learned through my connection with the Society. We are a community of people who find strength and, subsequently, the resources to endure. We may be down for a day or two (sometimes a month) but we always get up and move on no matter what the circumstance.

Q: WHAT DRIVES YOU TO RAISE MONEY TO SUPPORT THE MS MOVEMENT?

A: Fear! I am tired of hearing that someone I know knows someone with MS–enough already! I mentioned previously that I did not think I could make a difference. That changed when I did my first Challenge Walk MS in 2006. That was a life-changing experience–not only because of the amazing support and donations I received from my friends, but because of the people I met. On the second day, about 30 miles in, a man approached me wearing a plastic soldier’s helmet. He said: “Kevin, one day soon we are going to beat this disease and when that day comes we will find another cause. Thank you for doing this for my bride.” That day I committed to utilizing my skills to do something outstanding.

Q: WHAT WAS YOUR FIRST FUNDRAISING EXPERIENCE?

A: Our first event for the Lombardi Party Challenge Walk MS team was our Comedy Night fundraiser. To date, we have raised over $50,000 as a result of this event alone. And it has become the annual kick-off event for our fundraising. We now have 7 to 10 events per year, including the Lombardi Cocktail Party, Rock the Walk Concert, and more. I have no problem asking for donations. This is critical in fundraising. I

NATIONALMSSOCIETY.ORG | 1-800-344-4867 am in sales and believe nothing in this country moves unless something is sold. I was awestruck by how many friends were willing to support us, but more importantly by how many have been personally impacted by this disease.

Q: HOW HAS YOUR FUNDRAISING GROWN?

A: When the Lombardi Party started eight years ago, we had no goals. Today, we set goals and not all are revenue related. Our ultimate objective is to recruit new people to our cause. We have recruited walkers, cyclists (Lombardi Party Bike Team), MuckFest MS participants (Lombardi’s Muckers), stair climbers (Chili Head Climb Team) and volunteers. If you have the time and desire, there’s a place for you in the Lombardi Party. That first year I raised more than $3,000; last year, we raised well over $100,000. I am most proud of the community of individuals and teams who make up the Lombardi Party.

Q: WHAT MESSAGE WOULD YOU LIKE TO SEND TO THOSE WITH LOVED ONES WITH MS?

A: Join us and get involved! Align with a volunteer or a team (Bike, Walk, etc.) and learn how you can contribute and achieve great things. n Originally published in the Greater New England MS Connection newsletter.

JOIN THE MOVEMENT

There are many ways you can give and help end MS forever. From supporting a Bike MS team to attending a Do It Yourself fundraiser, you can make your gift personal and meaningful. You can also ask your employer if they participate in a matching gift program. For more information, please visit www.nationalMSsociety.org/Donate or call 1-800-344-4867. Visit www.DIYMS.org to find out how to support the MS movement your own way. n

THANK YOU VOLUNTEERS We rely on volunteers every day. Volunteers are crucial to the MS Movement, so we say “thank you” for your part in moving us closer to a world free of MS. To learn how you can volunteer call 1 800-344-4867.

TRIBUTES AND MEMORIALS If you want to honor someone living with MS or memorialize a loved one who passed away, please consider naming the Pennsylvania Keystone Chapter of the National MS Society as the charity of your choice for donations. All contributions help to support local programs and services and fund MS-related research efforts. All tributes and memorial gifts are appreciated.

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MS CONNECTION: SPRING/SUMMER 2015

Concidering Returning to Work?

ASK THE EMPLOYMENT SPECIALIST

NATIONALMSSOCIETY.ORG | 1-800-344-4867

FUNDRAISING IN 2015:

DO YOU HAVE AN EMPLOYMENT QUESTION YOU WOULD LIKE ANSWERED? Curious about workplace disclosure? Need a reasonable accommodation? Wondering about disability benefits? Considering returning to work?

and Harrisburg JoinCalling us for Altoona a telephone question and Areafrom Residents! answer session 12 to 1 p.m. on Register Today, Call 1 800-344-3867! Wednesday, November 12, 2014. Altoona: Harrisburg: National MS Society employment specialists Christina Date: Tuesday, June 16, 2015 Date: Thursday, JuneForster, 18, 2015 Time: 11:00 AMCRC, - 7:00 PM MA, Employment Services Manager, Steve MS, Time:and 11:00 AMNissen, - 7:00 PM Location: 506 Third Avenue, Location: 2000 Linglestown Rd, will Ste 201 CRC, Senior Director of Employment Programs and Services, be Duncansville, PA 16635 Harrisburg, PA 17110concerns available to address your questions regarding employment

for people living with MS. Schedule an in-person or phone consultation with the National MS Societyâ&#x20AC;&#x2122;s employment services manager, Christina L. Forster, MA, CRC by calling 1 800-344-4867. Register early, space is limited. Registration is required.

Purchase tickets today by visiting www.MuSicForMS.org!

MS CONNECTION: SPRING/SUMMER 2015

FUNDRAISING OPPORTUNITIES

WALK MS 2015 WALK MS IS A SIMPLE, BUT INCREDIBLY POWERFUL WAY FOR YOU TO SHARE IN THE HOPE FOR THE FUTURE. The 2015 Walk MS campaign got community members moving and left them moved! A special thank you goes out to everyone who came to one of the 23 Walk MS events throughout 56 counties across Pennsylvania. By joining the Walk MS movement, you joined our fight to stop MS. You shared a remarkable achievement with nearly 15,000 other walkers. Most importantly, you made a difference by helping to raise nearly $1.6 million for research and services for people with MS across Pennsylvania!

NATIONALMSSOCIETY.ORG | 1-800-344-4867

SPONSOR HIGHLIGHTS

Western PA Walk MS presenting sponsor, TeleTracking Technologies, does it again!

A huge thank you goes out to all of our friends at TeleTracking Technologies, who were once again our generous Western PA Walk MS Presenting Sponsor. A WORD FROM OUR PRESENTING SPONSOR, TELETRACKING TECHNOLOGIES INC. “Why we support the PA Keystone Chapter of the National MS Society: At the age of 37, one of TeleTracking’s colleagues was diagnosed with MS. Kathy Unger, Accounts Receivable Clerk, will never forget the day she got the news. “MS can happen to anyone. Overnight. It blindsides you. Unfortunately, this disease is not predictable, it is hard to diagnose and all cases are different,” says Unger. “While MS can be a daily struggle, I am very blessed to still work and I desire to keep living life to the fullest. I support the MS Society because we need to find a cure. I walk for others who cannot.”

We unite as a community during Walk MS to make a powerful statement – to keep us moving toward a cure for multiple sclerosis. Whether you walked, volunteered, donated or fundraised, we thank you for getting involved. You are an important part of the Walk MS movement. Remember, each step you take brings us closer to a world free of MS. We look forward to working with all of you for a great 2016 Walk MS season, and please stay tuned for walk dates, locations and more. n

WE COULDN’T DO IT WITHOUT OUR PARTNERS! Corporate partners move our cause forward, and we would like to take a moment to thank a few of the many corporate partners that enable us to create such wonderful events! Thank you to our local sponsors: Teletracking (Western PA presenting sponsor), GIANT Foods (Central PA presenting Sponsor) KDKA TV, KDKA Radio, Lamar Outdoor Advertising, SAM’s Club, BAYADA Home Health Care, Genzyme, Acorda, Biogen, TEVA, Mallinckrodt, Integrity Bank, Mylan, Peoples Natural Gas, Sarris Candies, Care Unlimited, The Plastek Group, PPM Realty, EMD Serono, UPMC, Chartwell, Allergan, Texas Roadhouse, Toshiba, Excela, Nemacolin, 5 Generation Bakers, Snyder of Berlin, Giant Eagle, Eat n’ Park, Edible Arrangements, NuGo, Rita’s, Pepsi, Betsy Ann Chocolates, Rivers Casino, Spokane Ortho, Café Kolache, Northwest Savings Bank, Logistics+, Greenleaf, LECOM, Ainsworth, South Erie Turners, Jet 24, Fox66, Utz, Little Caesars, Cool 101, S&T Bank, Conemaugh Health System, Fairmans Contracting Inc., Marianna’s Fundraisers, Treasure Lake, Imlers, Bestway Pizza, Subway, Pizza Hut, Roaring Spring, WTAJ, Froggy 98, 96Key, Sunny 106, Westshore Shower & Bath, Jack Giambalvo, Kinsley Construction, Canteen, Allied Services, WGAL, The Citizens’ Voice, WHAG, Oldiez 93, ($ OneKX, Y106, ESPN 92.3, B98, Majic 99, WRSC, myTV WHVL, PASN and more!! n

TeleTracking has donated to the MS Society for over 10 years in support of Kathy. At first, only a small number of people joined her at the walks. Most donated on her behalf, but then realized they wanted to be there in person to support her and others struggling with MS. A team was formed with matching t-shirts to show our unity. About TeleTracking TeleTracking (http://www.teletracking.com) created the automated patient flow category and now offers Real-Time Capacity Management™ solutions and services to nearly 900 clients, including most of America’s “Top Hospitals,” which account for 350,000 of the nation’s 800,000 hospital beds. Its automated operations management platform helps optimize daily hospital functions by tracking patients, staff and assets, in real time. Thank you for your continued support, TeleTracking, we look forward to working with you next year! n

MS CONNECTION: SPRING/SUMMER 2015

NATIONALMSSOCIETY.ORG | 1-800-344-4867

SPONSOR HIGHLIGHTS

A huge thank you goes out to all of our friends at GIANT Food Stores and MARTIN’S Food Markets, who were once again our generous Central PA Walk MS Presenting Sponsor. Each year the associates at GIANT Food Stores and MARTIN’S Food Markets lace up their sneakers and walk to support local MS Societies within the communities where they live and work. In 2015, GIANT/MARTIN’S was once again the #1 MS Walk team in the country. Associates from Pennsylvania, Maryland, Virginia and West Virginia walk to help those living with MS. GIANT/MARTIN’S has supported the MS Society for nearly 15 years and during that time has raised millions to help fund education, advocacy, research and local programs that enhance the quality of life for those with multiple sclerosis. The National MS Society recognized GIANT/MARTIN’S for its ongoing commitment and support with its Circle of Distinction Recognition Award in 2011 and the Corporate Star Award in 2013. About GIANT/MARTIN’S Founded in 1923 in Carlisle, Pennsylvania, GIANT/MARTIN’S operates nearly 200 grocery stores in Pennsylvania, Maryland, Virginia and West Virginia, under the names of GIANT Food Stores and MARTIN’S Food Markets. GIANT/MARTIN’S employs more than 33,000 associates and is a division of Ahold USA. In addition to working with hundreds of local and regional organizations annually, GIANT/MARTIN’S has a long-standing focus on efforts to eradicate hunger and improve the quality of life for children. GIANT/MARTIN’S is one of the top ten fund-raisers in the country for local Children’s Miracle Network hospitals. The company was also recognized as 2015 Chain Retailer of the Year by Grocery Headquarters. For more information visit GIANT or MARTIN’S websites. Find GIANT and MARTIN’S on Facebook and on Twitter @GiantFoodStores or @MartinsFoodMkts. n

YOU’RE INVITED TO THE

HARRISBURG OFFICE’S OPEN HOUSE! Thursday, June 25th 3 pm until 7 pm Harrisburg Office 2000 Linglestown Rd, Ste 201 Harrisburg, PA 17110 RSVP encouraged: Call Mary Koontz at 1 800-344-4867, option 2, ext 62132

PLEASE JOIN US AS WE CELEBRATE OUR NEW LOCATION! Come meet the Pennyslvania Keystone Chapter President Anne Mageras, have your MSrelated questions answered by our newly formed Services and Advocacy Department and learn about fundraising from the Development Team!

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047

1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867

The official registration and financial information of the National Multiple Sclerosis Society, Pennsylvania Keystone Chapter, may be obtained from the Pennsylvania Department of State by calling, toll free within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.

Golf Outing

Save the Dates

To learn more about these events or other MS Golf events visit: MSPAKeystone.org

Erie Golf Outing Monday, August 3, 2015 Lakeshore Country Club Erie Anne E. Barnes Memorial Tournament Thursday, September 3, 2015 Iron Masters Country Club Roaring Springs

Annual MS Golf Tournament, Colleen McGuire Memorial Tuesday, September 15, 2015 Laurel Valley Golf Club Ligonier Great courses. Great cause. Great reason to take the day off.