MS Connection, February 2015 issue

WINTER 2015 PENNSYLVANIA KEYSTONE CHAPTER

INSIDE THIS ISSUE

04-05LIVING WITH MS: HAPPY MS ANNIVERSARY TO ME

06-09LIVING WITH MS: UPCOMING PROGRAMS & TELECONFERENCES

12EMPLOYMENT: TIPS FOR A SUCCESSFUL INTERVIEW

15RESEARCH:THE ROLE OF MICROGLIA

MS CONNECTION NEWSLETTERBE INSPIRED. GET CONNECTED. WALK MS.

2 MS CONNECTION: WINTER 2015

NATIONAL MULTIPLESCLEROSIS SOCIETYPennsylvania Keystone Chapter1-800-344-4867

Pittsburgh Office 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233

Harrisburg Office2000 Linglestown Rd, Ste 104Harrisburg, PA 17110

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

© 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.

WALK TO CREATE A WORLD FREE OF MS.FROM THE BOARD PRESIDENT, WILLIAM SHRADER

Like many of you, I have a family member who lives with the daily challenges of multiple sclerosis.

When my cousin, Marcy, was diagnosed with MS over 25 years ago, neither of us knew much about the disease or what it meant for her life. Since the diagnosis, we have both learned a tremendous amount of information thanks to the National MS Society. But, only Marcy and her family have had to live with the actual damage caused by this life-changing disease.

Today, she lives in Ohio and I live in Pennsylvania. So when she was suddenly coping with new symptoms that may make it unable for her to walk one day, it was difficult to be so far away from her and not be able to help.

Walk MS is the ultimate chance for me, and for you, to help Marcy and those like her dealing with the daily effects of MS. I have been doing the Walk with my family since 2005. We walk because Marcy can’t, and many others are in the same situation. No matter the state or chapter, all of us walk together to create a world free of MS.

Walk season is a wonderful time of year to give hope. The 2015 Walk MS Campaign takes place throughout April and May in 23 local communities across Western, Eastern and Northern Pennsylvania. Join me, so together we support cutting-edge MS research and life-changing programs and services for people living with MS. Walk MS, is an opportunity for people living with MS, and those who care about them, to connect and join together, to be inspired, and to raise critical funds for the National Multiple Sclerosis Society.

continued on page 3

3NATIONALMSSOCIETY.ORG | 1-800-344-4867

For Marcy and others like her, I dream of a cure for multiple sclerosis. That is why I walk. Every little step that we take is a step closer to the cure. Look for the registration information in this newsletter or register online at www.walkMS.org and support my cousin and your loved ones through your fundraising efforts.

1. Take the first step and register for Walk MS 2015, www.walkMS.org 2. Start your fundraising efforts by personally donating to the cause. Your donors will see that you

are vested in the cause and will be more likely to donate to you. Make a self-donation of $35 or more and become a “Mission Movers.”

3. Personalize your Walk MS page through your Participant Center. Research shows that personalizing this page can double your donations and number of donors.

4. Use the Walk MS Facebook fundraising application to ask for donations from your online friends. This broadens your donor base.

As the Board Chair for the Pennsylvania Keystone Chapter of the National MS Society, will you accept my challenge? Can you increase your fundraising by 5% or can you make a personal contribution of $5.00 more than you have in the past? Imagine the difference we can make.

I hope I can count on you for your support. I sincerely appreciate your efforts as we strive for a cure together. If you have any questions or need anything at all, the folks at the National MS Society will be glad to help you. Just email us at [email protected] or call us at 1 800-334-4867. Thanks again for your efforts. I’ll see you at Walk MS! n

continued from page 2

MAKE A DIFFERENCE. BECOME A PART OF WALK MS TODAY!FROM THE CHAPTER PRESIDENT, ANNE MAGERAS

You’ll move. You’ll be moved. As Bill mentioned, the 2015 Walk MS Campaign takes place throughout April and May in 23 local communities across Pennsyl-vania. We hope you’ll be one of the nearly 15,000 walkers expected to join us this spring! When you participate in Walk MS, the funds you raise give hope to the more than 14,000 people living with MS, and their families, throughout our 56-county Chapter region.

Register today at walkMS.org or 1 800-344-4867. If you have questions or need help registering, please contact the chapter’s Development Manager Susan Cook at 1 800-344-4867 or e-mail [email protected].

I hope to see you in the spring at a Walk MS event! n


LIVING WITH MS

HAPPY MS ANNIVERSARY TO MEBY DOUG ANKERMAN, MS AMBASSADOR

Fall holds a special place in my heart. It’s my anniversary—my MS anniversary.

Yep, multiple sclerosis and I have been together 18 years now. We began with a short courtship. A few twinges of weakness here and there. Some numbness. But just enough to raise my family doctor’s suspicions. An MRI later confirmed a diagnosis of MS.

It was September of 1996 when we finally exchanged our vows.

I, Doug, take you MS, to be my chronic disease.To have and to hold

(Are they referring to the MS Hug?)From this day forward.For better or for worse

(I’m hoping for the better.)For richer or for poorer.

In sickness and in health, until death do us part.

We didn’t have much of a honeymoon because soon after our ceremony I was hooked up to a steroid

IV. (I guess that was part of the “in sickness and in health!”) Like most relationships, through the years we have had our share of ups and downs, highs and lows, stumbles and falls (mostly by me).

Since separation or divorce wasn’t an option, we did the counseling and support group thing, only to realize we really didn’t like each other. I wasn’t fond of MS and likewise, MS didn’t think much of me.

It took several years before we came to a mutual compromise. MS would do its thing and I would do mine. When MS would zig, I would zag. When MS threatened my ability to drive, I got hand controls for the car. When it challenged my balance, I would use grab bars, canes and a rollator. And when MS swipes my powers to walk, I use a wheelchair.

My point being, whatever your MS throws at you, you can return the favor with something bigger and better. You can exercise to improve your symptoms of fatigue. You can stretch to lessen the spasms of

DOUG ANKERMAN


National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898

spasticity. And you can take part in activities you enjoy to combat the negative doldrums of MS.Personally, I enjoy writing about MS. I make fun of it, to its face, on my MS humor-inspired blog, My Odd Sock. Writing about MS helps me cope with the everyday challenges and frustrations that people with MS face. Making light of MS makes me feel that I am bigger than the disease.

I hope the readers of My Odd Sock feel the same way. As a person with MS who is way wiser than I once commented, “It is better to live and laugh than cry and die.” Well stated. Living by that standard could be the reason why MS and I have been able to put up with one another for 18 years.

As I “celebrate” the anniversary of my illness with much sarcasm, my true feelings are filled with hope and positive energy for a long future with MS. May you who live with MS feel much the same. n

Find Doug Ankerman’s blog at www.myoddsock.com or follow him on Twitter @myoddsock.

Originally published in the Ohio Buckeye MS Connection newsletter.

Reach out to the National MS Society to explore resources and information on symptoms such as falling, fatigue, mobility issues, cognitive changes and more. Call 1-800-344-4867 or visit www.nationalMSsociety.org. To connect to other people whose experiences of living with MS may be similar to yours, visit www.MSconnection.org.

INTRODUCING TWO NEW

CONNECTIONS GROUPIN-PERSON MEETINGS

BUTLER COUNTY: Mars, PA3rd Thursday, 6:00 p.m.

Malek, Herring, Krause Psychological Practice, 195 Crowe Ave

Contact Elizabeth Krause with question at 724-772-4949

CAMBRIA COUNTY: Laurel Highlands/Johnstown, PA2nd Monday, 6:00 p.m.

John P. Murtha Neuro Center, 1450 Scalp AveContact Cindy Slaventa with question at 814-535-6249

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 Ad-vocacy, PA & NJ at [email protected] or visit our website at MSPAKeystone.org

www.MSconnection.org


LIVING WITH MS: UPCOMING TELECONFERENCE

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:

MS AND EMPLOYMENT

Thursday, February 26, 8 pm Managing Cognitive Symptoms and Fatigue in the Workplace

Thursday, March 12, 8 pm Supports to Help You Find Employment

Thursday, March 26, 8pmGuide to Flexible and Home-Based Jobs

MANAGING MS BOWEL AND BLADDER SYMPTOMS:

• Tuesday, March 17, 2015: 7 pm• Thursday, March 19, 2015: 10 pm

SEX ED FOR GROWNUPS - INTIMACY IN MS:• Tuesday, May 19, 2015: 7 pm• Thursday, May 21 2015: 10 pm

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, Septemeber 17, 2015: 10 pm

Visit www.nationalMSsociety.org/telelearning or call 1 800-344-4867 to reserve your spot. n

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LIVING WITH MS: MS SEMINARS, BLOOMSBURGPresented by: Dr. Douglas Nathanson,Neurologist, Geisinger Wyoming Valley

The Pennsylvania Keystone Chapter of the National MS Society is pleased to present a 5-part series on a variety of topics related to MS. Each event will take place from 5 to 7:30 p.m. at The Links at Hemlock Creek, Bloomsburg, PA.

Complementary meal will be provided; you may bring one guest due to limited seating.

Registration is REQUIRED for each night. You must register as least one week in advance.

March 12, 2015: MRI & ImagingApril 9, 2015: Beat the Heat & Fatigue

May 21, 2015: EpidemiologyJune 18, 2015: Stem Cell Research

July 9, 2015: New Directions in Research & Medication

Register today at MSPAKeystone.org or 1 800-344-4867

The Links at Hemlock Creek, 55 Williamsburg Boulevard,

Bloomsburg, PA 17815

For questions or to cancel, please contact Susan Guinter at 1 800-344-4867 or

[email protected]

Thank you to Biogen Idec for their support of this program.

LIVING WITH MS: MOVEMENT MATTERS FOR A HEALTHY LIFESTYLE EXERCISE PROGRAM

In addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms. Research also is increasing indicating that exercise can benefit the quality of life of people with MS. This program is designed to help develop an exercise plan that you can do independently at home between classes. The class is designed for anyone living with multiple sclerosis and a coach/helper if needed. The class will be adapted to your individual needs. Please wear loose, comfortable clothing. Please note, this class is a group exercise class and not an individual therapy or occupational therapy session. A waiver of release will be sent to registered participants one week in advance of class. Releases and physician’s approval must be returned to the Chapter office prior to the class.

Exercise Instructor: Lisa Young, PTALocation: HealthSouth Rehabilitation Hospital of York, PT Gymnasium, 1850 Normandie Dr., York, PA 17404Dates: 1st and 3rd Wednesday of March - June March 4 &18, April 1 & 15, May 6 & 20 June 3 & 17Time: 6:00 PM - 7:00 PM

There is no fee for the class. Donations are accepted to defray program costs.

Register Now call 1-800-344-4867, press option 2, Extension 63211 to reserve your spot


LIVING WITH MS: CAFÉ CON LECHE: EDUCACIÓN Y CONVERSACIÓN PARA PERSONAS VIVIENDO CON LA ESCLEROSIS MÚLTIPLE (EM)

La Sociedad Nacional de Esclerosis Múltiple ofrece una conferencia telefónica, totalmente gratis y en español.

En el mes de marzo habrá una llamada educativa especial durante la semana nacional de conocimiento para la EM. Invitamos a las personas hispanas/latinas con EM y sus seres queridos a participar por teléfono con nosotros, desde la comodidad de su hogar u oficina, Tome su taza de café, siéntese, escuche y comparta con nosotros las experiencias de vivir con EM.

Presentación: Estado de ánimo y Cognición en la Esclerosis Múltiple: Lo que puedes hacer Dra. Wendy Vargas, neuróloga especialista en EM Centro de Cuidado Clínico e Investigación de la EM delCentro Médico de la Universidad de Columbia, NY

martes, 3 de marzo del 2015Horario: 2 - 3:30 p.m. (Hora estándar del este)

Para inscribirse llame al 1-800-344-4867, opción 3.

Café con Leche: Conversation and Support for People Living with Multiple Sclerosis We invite Hispanics/Latinos with MS to participate with us from the comfort of their home or office phone. Grab your coffee cup, sit back, and listen to the experiences of other people living with MS.

Tuesday, March 3, 2015

Time: 2 – 3:30 p.m. (Eastern Standard Time)

For more information or to register call 1-800-344-4867,

option 3.

Presentation: Mood and Cognition in MS: What You Can DoDr. Wendy Vargas, neurologistMultiple Sclerosis Clinical Care and Research Centerat Columbia University Medical Center, NY


LIVING WITH MS: NEW MONTHLY CALL-IN CONNECTIONS GROUP FOR YOUNG ADULTS LIVING WITH MS

Join us in the convenience of your own home for a connections support group for young adults, their families and friends. Call in and learn from others about multiple sclerosis, available resources, and preparing for and overcoming potential challenges. You will have the opportunity to connect with other young adults, find support and share your experiences. The National MS Society, PA Keystone Chapter, is excited to offer a monthly phone group meeting! Our Connections group for young adults is led by Barb Keen. These phone meetings will be held the 2nd Wednesday from 6 PM to 7 PM each month. The first meeting is March 11th, 2015. n

Please call into 1 888-279-3775 and use conference ID # 6203

If you have any questions about this group, please contact Susan Guinter.

1 800-344-8467 choose option #2 or [email protected]

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 [email protected]. n

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. Contains games, fun, and information. Call the chapter or email [email protected].

TRIBUTES AND MEMORIALS

If you want to honor someone with MS or have lost a loved one, 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 tribute and memorials gifts are appreciated.

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LIVING WITH MS

NOVEMBER WAS NATIONAL

CAREGIVER APPRECIATION MONTH! We wrapped up our November Caregiver Appreciation and wanted to take a moment to send our “heart-felt” thank you to all those caregivers that humbly give their gift of compassion and support to our friends living with MS.

We are happy to report that we sent out over 250 “You Protect Me in All Kinds of Weather” umbrellas as an expression of our gratitude. The PA Keystone Chapter of the National MS Society thanks you for your extraordinary dedication and service. We truly value your commitment, your sensitivity, your grace, and your presence when the rain falls and when the sun shines.

Thank you to our friends living with MS for nominating your caregiver for the umbrella of appreciation. If you missed National Caregiver Appreciation month, be sure to thank your caregiver “anytime, any day, any month” for their extraordinary care given to you! n

LIVING WITH MS

CLASSIFIEDS: PERMOBIL POWER WHEELCHAIR Used Permobil Chairman 2K power wheelchair in excellent condition. Asking price is $2800.00. The chair has power seat elevator, power tilt, power

recline, and power leg/footrests. Also included is a 4 inch high Roho seat cushion, and a battery charger. This chair is used and is in excellent condition. Can deliver after purchase, within 50 miles. Call 717-501-5133 with questions or to make arrangements to see the chair.

INVACARE PATIENT LIFTInvacare Patient Lift Invacare Reliant 450 Patient Hoyer Lift, including patient sling. This lift is new, never used. Asking price is $500.00. Can deliver after purchase, within 50 miles. Call 717-501-5133 with questions or to make arrangements to see the lift. n

DID YOU KNOW?

Almost every National MS Society program is available

to anyone affected by MS. To learn about programs available to you, visit MSPAKeystone.org and select “Resources & Support” from the top navigation menu.

NATIONALMSSOCIETY.ORG | 1-800-344-4867 11SERVICE: AMERICORPS CONNECTIONS WITH THE NATIONAL MS SOCIETY

The Pittsburgh Health Corps is a program of the National Health Corps AmeriCorps program. Since 1994, the Pittsburgh Health Corps (PgHC) has been based at the Allegheny County Health Department, which fosters collaboration between members and agencies throughout the Pittsburgh area. The PgHC is committed to decreasing disparities in local healthcare delivery systems and promoting health. The PgHC collaborates with a broad range of sites to ensure members are exposed to diverse opportunities in public health. Sites typically include homeless clinics, schools, health centers, and inter-generational community programs.

This is the third year in a row the Chapter has been engaged in the AmeriCorps program. The current service member is Katie Serwa. She is from Massachusetts and is enjoying her time here in Pennsylvania. She’s the Chapter’s Internal Care Manager for persons with MS. A majority of her time is focused on helping folks get connected to community resources and making sure everyone gets access to health insurance benefits. She implements the Coping with Stress program created by Dr. Bruce Rabin and the Chapter created Financial Wellness Program. She attends two of the Pittsburgh based MS Clinics. She hosts Chapter vendor tables at local health fairs and plans to attend MS Connections groups.

If you have a question for Katie, feel free to reach her at 1 800-344-4867 x63223 or e-mail her at [email protected]. n

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 [email protected]. n

Exciting news for ladies in the Hershey and State College area!

You do not want to the miss2015 Women on the Move Luncheon!

For more information on this one of a kind event, watch your e-mails or our webiste at

MSPAKeystone.org!


EMPLOYMENT

TIPS FOR A SUCCESSFUL INTERVIEWBY CHRISTINA L. FORSTER, MA, CRC

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 you are interviewing with. 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 info prepared on a separate sheet of paper.

Practice. Compile a list of your strengths and weakness so you are organized and thoughtful 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 they are saying. If you’re not sure, it’s OK to ask them 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 American’s 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. Most individuals with MS can relate to the foreboding that accompanies them to a job interview when thoughts of the types of questions they will be asked concerning their disability come to mind. Here is a brief rundown of the legal and illegal questions an employer can and cannot ask.

Questions an interviewer cannot ask:• Do you have a disability?• Do you have any pre-existing health

conditions?• How many sick days did you take with your

previous employer?

• What medications are you taking, or have taken?

• Are you able to use your legs at all?• Are you on any medication?

Questions an interviewer can ask:• Can you perform the essential functions the

particular position you are applying for?• How will you perform the job function (if

they know you have a disability)?• 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, either by email, letter or a phone call. Happy job hunting! n

FAMILY FUN DAY AT KNOEBELS

Bring the family to Knoebels Grove Amusement Park on Sunday, May 31st for a day of fun, food and fantasy! There will a short presentation by Elisabeth Lucassen, MD from Penn State Milton S. Hershey Medical Center, MS Center. More information at MSPAKeystone.org.

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RESEARCH

FOCUSING ON PROGRESSIVE MSThe achievements of Dr. Barry G.W. Arnason, the 2014 recipient of the Dystel Prize for Multiple Sclerosis Research, are many, and include such significant contributions as laying the groundwork for the development of immune-directed therapies and understanding how the different components of the immune system work in MS. However, some of his discoveries hold particular significance for people with progressive forms of MS.

UNDERSTANDING PROGRESSIVE MS

Much MS research has focused on the role of T cells, which are a specific type of white blood cell that somehow become turn on the central nervous system and produce damaging inflammation. However, “I don’t think T cells have much to do with progressive MS,” said Dr. Arnason. “I think the problem is activation within the central nervous system of microglial cells, and that activation is the key to potential treatments of progressive MS.” Dr. Arnason made these comments in the opening lecture at the 2012 Annual Meeting of the Consortium of MS Centers in San Diego, while emphasizing that MS research focus more on progressive MS.

Dr. Arnason’s research into progressive MS has also helped to uncover evidence that damage to the spinal cord leads to the increased activity of certain docking sites on immune cells, suggesting

a vicious cycle of immune changes, damage and increased immune activation. Along the way, he also contributed to the better understanding of other disorders such as Guillain-Barré syndrome and myasthenia gravis.

TRAINING THE FUTURE

Dr. Arnason is also planting the seeds for high-quality MS care in the future. His institution, the University of Chicago Medical Center, at which he is the James Nelson & Anna Louise Raymond Professor of Neurology, recently received an Institutional Clinician Training Award from the Society. These awards provide five years of funding to support the establishment of a world-class training program, thereby attracting the best MS clinicians over multiple years.

The Dystel Prize is awarded awarded jointly by the National MS Society and the American Academy of Neurology. The award is made possible through a special fund established in 1994 by the late Society National Board member Oscar Dystel and his late wife Marion in honor of their son John Jay, an attorney whose promising career was cut short by progressive disability from MS. To learn more about Dr. Arnason and past Dystel recipients, visit www.nationalMSsociety.org/dystel. n


RESEARCH

THE ROLE OF MICROGLIAA type of immune cell called microglia, which is widely believed to exacerbate chronic adult brain diseases such as multiple sclerosis, might actually slow the progression of neurodegenerative diseases, according to new research. The research was led by Dr. Bruce Trapp, chair of the Department of Neurosciences at Cleveland Clinic’s Lerner Research Institute, and was published in Nature Communications in July 2014.

“Our findings suggest the immune system protects the brain after injury or during chronic disease, and this role should be further studied,” Dr. Trapp says. “We could potentially harness the protective role of microglia to improve prognosis for patients with traumatic brain injury and delay the progression of Alzheimer’s disease, MS and stroke. The methods we developed will help us further understand mechanisms of neuroprotection.”

HOW MICROGLIA WORKMicroglia are primary responders to the brain after injury or during illness. Dr. Trapp’s team used an advanced technique called 3D electron microscopy to visualize this activation of microglia and subsequent events in animal models.

They found that, when chemically activated, microglia migrate to inhibitory synapses, which are the connections between brain cells that slow the firing of impulses. Microglia then dislodge the synapse, thereby increasing neuronal firing and leading to a cascade of events that enhance survival of brain cells. Dr. Trapp’s past research has included investigating the causes of neurological disability in people with MS, the cellular mechanisms of brain repair in neurodegenerative diseases and the molecular biology of myelination in the central and peripheral nervous systems. In 2009, he received the National MS Society’s 2009 Stephen C. Reingold Award and, in 2013, he was inducted into the Society’s Volunteer Hall of Fame for Scientific Researchers. He also received the John Dystel Prize in 2003, awarded jointly by the Society and the American Association of Neurologists to recognize outstanding contributions to the field of MS research. n

Originally published in the Ohio Buckeye MS Connection newsletter.

DR. BRUCE TRAPP


ADVOCACY

LEADING TO MS AWARENESS BY SANDI MAHONEY

I decided to become a National Multiple Sclerosis Society self-help group leader one year ago, seven years after I was diagnosed with MS. It was one of the best decisions I have ever made. I cannot even describe how

rewarding it has been. I have met the most

amazing people. Some participants are newly diagnosed while others have traveled the MS journey for over 25 years. Each person has ideas, suggestions and experiences that benefit the entire group. Men and women alike attend our monthly meeting and new people join every month. We talk about everything and I mean everything. We had a lively discussion about medical marijuana that included a lot of laughs. We have also discussed medications, support networks, resources, caregiver support, drug trials and what the Society does to help. We have established a strong bond

and confidentiality is our first priority. This way, everyone feels safe to discuss whatever is on his or her mind.

Over the last couple of months, I have encouraged participants to raise awareness about MS. My co-leader set up a table at her workplace during MS Awareness Week last March, which led to coworkers donating to our Walk MS event. The more we spread the word about MS, the better educated people will be about our MS journey.

This year, several group members took part in their first Walk MS ever. What an inspirational day! We raised money, awareness and hope. We each have to be our own advocates in whatever way we feel comfortable. I do realize that I cannot save the world, but I am hoping that the people who need support and information continue to come to our meetings.

The Society provides thorough, interactive training to all support group leaders. Call 1 800-344-4867 to start or join a self-help group in your area. n

Sandi Mahoney lives in Chicopee, Massachusetts, and has worked as a special needs teacher, as well as in the insurance industry. She is currently the primary caregiver for her elderly mother and an MS activist.

Originally published in Greater New England’s MS Connection newsletter.

SANDI MAHONEY, SELF-HELP GROUP LEADER


WAYS TO GIVE

THE HALF-FULL GLASSBY LUKE MAINWARING

Some of my fondest memories involve the many tennis matches I played with my dad. I don’t remember the details of every match, but there is one I will never forget.

I was quite young, but old enough to be a formidable opponent. All of a sudden, in the middle of our match, my dad began playing horribly. I initially assumed he was just going easy on me, but he only got worse. He asked if we could take a break. On the bench, he told me he felt extremely dizzy and had no idea why.

A couple of years later, I remember finding some MRI images on the kitchen counter and having no idea what they were. Eventually, my dad told me he had MS. I was very worried, but he assured me everything would be fine. Nevertheless, the news changed me profoundly. I tried to learn as much as possible about MS, and along the way, I developed a strong interest in science, specifically neuroscience.

I took this passion to the next level when I worked as a research assistant in the Department of Medicinal Chemistry at Virginia Commonwealth University. Whenever I had free time, I researched MS, whether by perusing scientific journals or

discussing it over lunch with a neuroscience professor.

Recently, my girlfriend and I opened a café where we donate all of our profits to charity. We have already raised $1,200 for the National MS Society. I am amazed at how much support we have received from our community. Learning about science and operating my café have been, by far, my most rewarding high school activities. But I wouldn’t have experienced them if my dad had never been diagnosed with MS. Of course, he has faced many obstacles because of his disease and I have encountered hardships as well, but I like to look at the glass as half full. MS stays with me wherever I go, but it is a motivating force behind my endeavors, which will stick with me for the rest of my life. n

National MS Society 2014 Mike Dugan Scholar Luke Mainwaring is majoring in neuroscience at the University of Pennsylvania. To learn more about supporting or applying for Society scholarships, visit www.nationalMSsociety.org/scholarship, or call 1-800-344-4867.

NATIONAL MS SOCIETY 2014 MIKE DUGAN SCHOLAR,LUKE MAINWARING


If you are living with MS and need a helping hand, the PA Keystone Chapter of the National MS Society wants to help! Volunteers from our chapter will divide into teams and complete one day projects in your home or outside.

Other services may be provided according to client needs and volunteer skills. Applying for a project does not guarantee that your project will be completed as it depends upon volunteer availability in your area. Applications and back ground checks are required for clients and volunteers.

Please note: we are only accepting NEW inquiries. What a Difference a Day Makes! The deadline to inquire about a project is April 15, 2015. Projects will be completed between April - October 2015 depending upon volunteer availability and project tasks.

Learn more at MSPAKeystone.org or by calling Kimilie at 1 800-344-4867, option 2

Thank you to Donald B. and Dorothy L. Stabler Foundation for their support of this program that helps people affected by MS live their best lives, as we strive for a world free of MS.

MS Service Day

what a DIFFERENCE a day makes

People living with MS need a helping hand around the house. A sample of the projects volunteers can assist with include:

Yard work ~ Small household repairsDe-cluttering house or garage ~ Painting

Moving furniture ~ Heavy cleaningPacking/Storing items in garage or attic

Transporting donated items to thrift shopsHandyman chores

WHAT YOU CAN DO TO HELP!

• Donate your time and talents and become a “What a Difference a Day Makes” volunteer!

• Form a Service Team through your faith-group, business, institution, agency or organi-zation.

• Donate resources such as equipment, cleaning supplies, work gloves, shingles, power-washers, lawn mowers, rakes, tarps, wheel barrows, gift cards to area grocery or discount stores, etc.

• Donate money to expand the program to serve more people with MS and their families.

• To make a Difference today contact Robin

via e-mail at [email protected] or by calling 1-800-344-4867 ext. 62202

or learn more at MSPAKeystone.org.


Multiple Sclerosis Awareness WeekMarch 2-8, 2015

JOIN THE MOVEMENTAND CONNECT WITH US!

People all over the nation will be moving it during MS Awareness Week, catapulting our movement toward a world free of MS.

There are so many ways to move it toward a world free of MS:

Walk, Bike, Run, Volunteer, Advocate, Educate, Support, Donate and More!

Every action is a demonstration of your commitment to the MS movement. Learn more about the National MS Society PA Keystone Chapter and

how you can get involved by visiting our web site at www.nationalMSsociety.org/pax and Join the Movement Today!

We are the Pennsylvania Keystone Chapter of the National MS Society. We help address the challenges of more than 14,000 people living with MS, and their families, throughout 56 counties of PA. Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is

made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.


FUNDRAISING OPPORTUNITIES

JOIN THE MOVEMENT

Made Strong Relay Team, 2014

There is still time to Run for a Reason at the 2015 Dick’s Sporting Goods Pittsburgh Marathon!Thinking about running in the 2015 Pittsburgh Marathon?! GREAT! Do something good for yourself and for your community by Joining the MOVEMENT!

Join our Finish MS team, commit to help raise critical funds for those living with MS and enjoy FREE registration for the 2015 Dick’s Sporting Goods Pittsburgh Marathon on Sunday, May 3rd. Whether you are looking to run in the full marathon, half marathon, 5k or as part of a relay team – we want YOU to Run for a Reason!

As a member of the 2015 Finish MS Team, we are committed to helping you reach your mental and physical goals. We will provide you with all of the tools and support you need to meet and exceed your goals, while our seasoned fundraising and running coach, Dan, will host group training runs and is there to support any other training needs you may have.

Simply visit our website or contact Dan Siegert at [email protected] or 1 800-344-4867 to register or learn more! n

MS LEADERS CIRCLE OF 2015POWERFUL PEOPLE PROMOTING HIGH IDEALS

The MS Leaders Circle was established to honor professionals for their outstanding contributions to the business, civic, and cultural betterment in their communities. The members of the MS Leaders Circle have demonstrated the ability to make a difference in the quality of the lives of others. Because of their efforts, these leaders were invited to partner with the National Multiple Sclerosis Society in its movement to create a world free of MS. Through participation in the MS Leaders Circle, members have an opportunity to build a network with other business professionals who are also committed to a vision of a better community and a better world. This money raised funds vital research in multiple sclerosis and to provide important programs and services to people with MS and their families.

Each member of the Leaders Circle will:• Receive the prestigious MS Leaders Award• Receive a photograph taken at the reception• Gain recognition as an outstanding achiever

through press releases• Generate publicity for his or her business as

one that supports community involvement• Gain a feeling of satisfaction that comes from

helping in the quest to cure a devastating disease that affects young adults

If you would like to become a member of this year’s class or nominate someone to the class, please contact Karen at 1 800-344-8467 choose option #2 or [email protected] n

®


Whether you are a novice cyclist, looking to get back in the saddle, or a devoted yearly rider, this is an event that you don’t want to miss! Bike MS will take you further than you’ve ever gone before. It’s not the miles that matter — it’s the unforgettable journey. Join us for an event that’s more than a ride — it’s anticipation, camaraderie, personal accomplishment, and the knowledge that you’re changing lives… making every mile that much sweeter. Ride or volunteer for a weekend to remember!

Come join us on one of our extraordinary Bike MS rides this year. Bike MS is more than a ride, it’s the experience of a lifetime.

Come ride with us and support our vision of a world free of MS!Bike MS: Escape to the Lake June 13 - 14, 2015: 2 day, 150 mile rideStart: Moraine State Park, PAOvernight: Meadville, PA Finish: Conneaut, OH

Bike MS: Keystone Country RideJuly 18 – 19, 2015: 2 day, 150 mile ride Start/Finish: Hollidaysburg, PAOvernight: State College, PA

Bike MS: Mason-Dixon ChallengeAugust 22-23, 2015: 2 day, 150 mile ride Start/Finish: Liberty Mountain Resort & Conference Center

Bike MS: Cook Forest River Ride September 20, 2014: 1 day ride35 or 60 milesLocation: Cook Forest State Park, Cooksburg, PA

Register today at BikeMS.org or call 1 800-344-4867.


FUNDRAISING IN 2015:

STOMPING OUT MS ONE “DIVOT” AT A TIME

There are certain sporting endeavors here in America—polo being one—which many of us are aware of, yet know very little about. In August, curious midstaters will have a chance to experience the sport of kings firsthand.

The 10th annual George F. Hempt Memorial MS Polo Match will be held Saturday, August 1, 2015 at the Hempt Farm Polo Field, located across the Carlisle Pike from Cumberland Valley High School, Mechanicsburg, PA. In the feature event of the day, the West Shore team will be pitted in a match against the Maryland Polo Club. Gates to the grounds will open at noon, with the match beginning at 2 PM.

The annual exposition of “hockey on horseback” offers an uncommon opportunity for the public to experience and learn about a sport that is often kept out of the public eye. The game is divided into six seven-minute periods called “chukkas,” between which riders can rest and change mounts. Spectators are invited onto the field at halftime to participate in the traditional “stomping of the divots.”

Aside from the polo match itself, there will be a variety of events to entertain. A free children’s tent featuring games and crafts will open at noon, and a just-for-fun terrier race (other small dog breeds will be accepted) occurs at 1 pm. Although

fans are encouraged to bring their own food and drink, concessions will be available on the grounds. General admission is $50 per car for the match.

Event sponsorships are also available for this event. This includes a golf outing on Friday, July 31st followed by a “Denim and Diamond” gala under the stars along with VIP tickets for the match on Saturday.

Don’t miss the exceptional sight of this unique game and its skilled players. Not only will you learn about the game of Polo, you will experience an unforgettable day. This is a fun-filled event for all ages!

For additional information on the match and sponsorship, reach out to Debbie Garrison at 1 800-344-8467 choose option #2 or [email protected] n

GET INVOLVED: BECOME A MS VOLUNTEER!

Volunteers are key to any successful nonprofit organization. We are always in need of volunteers for events, such as Walk MS, Mille for MS, Bike MS, What a Difference a Day Makes and office help (ie: assisting with mailers, make phone calls, etc).

Interested volunteers can contact Susan Cook at 1 800-344-4867 or [email protected] for more information and to sign up! n


ADVERTISEMENT

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Pittsburgh, PAPermit # 3047

1501 Reedsdale St., Ste 105Pittsburgh, PA 152331-800-344-4867

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.

CAMPkids

The National Multiple Sclerosis Society, Pennsylvania Keystone Chapter is pleased to extend an invitation to children ages 7-15 of a parent or guardian living with multiple sclerosis for a weekend of fun and learning at camp.

Come join children from other chapters of the National MS Sclerosis Society for a weekend of swimming, hiking, crafts, and high adventures activities. This special weekend offers a great oppor-tunity for kids who have a parent or guardian with MS to connect with one another in a supportive environment.

For more information, to donate, volunteer or to register your child visit MSPAKeystone.org or call Pam at 1 800-344-4867.

INCREDIBLE LOCATION...TONS OF FUN…DON’T MISS IT!

JULY 24, 2015 - JULY 26, 2015

SKYCROFT

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.

Documents

MS Connection, February 2015 issue