FALL2012 WESTERNPENNSYLVANIACHAPTER
MS CONNECTION NEWSLETTER RESEARCH
THE LATITUDE EFFECT
CONNECTING THE DOTS: VITAMIN D AND MS
There’s a long-standing observation that population rates of MS increase the farther away one is from the equator and from the sun, exposure to which is our major source of vitamin D. Could the two be connected? Researchers have been exploring that very question.
BY DR. LINDA BUCHWALD Exciting new research is beginning to identify both genetic and environmental factors involving vitamin D that could increase one’s risk for developing MS and could influence disease progression. Research is also targeting vitamin D as a potential therapy, with clinical trials being planned or already underway to determine whether it can prevent or treat MS.
Studies of who gets MS have confirmed that higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of a first demyelinating event— often the first indicator of developing MS. In addition, there is evidence that high levels of vitamin D in utero and during adolescence and adulthood also have a positive effect on reducing the risk of developing MS. Other research suggests that vitamin D may have an effect on the inflammatory processes that occur during MS flares. In a small safety study at St. Michael’s hospital in Toronto, researchers found that immune T cells involved in MS attacks were suppressed in people who had higher blood levels of vitamin D.
GENES, VITAMIN D AND MS Studies done in families where multiple
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INSIDE THIS ISSUE
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CONTINUING CONNECTIONS
MS CAUCUS
WITH A LITTLE SUPPORT
THE 2012 BIKE MS SERIES
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MSCONNECTION: FALL 2012 MS CONNECTION: SUMMER
NATIONAL MULTIPLE SCLEROSIS SOCIETY
MS KILLS CONNECTION
Western Pennsylvania Chapter 1501 Reedsdale St., Ste. 105 Pittsburgh, PA 15233 1-800-344-4867 nationalMSsociety.org/PAX
By joining MS Connection, you’ll be able to make meaningful connections when, where and how you want with easy access to the best content and resources the MS community can bring you. You’ll learn about the topics that are most important to you, connect with people you want to connect with, and have expert MS information and opinions right at your fingertips.
Chairman: David Strassburger, Esq. Chapter President: Anne Mageras Contributed Writing: Chapter Staff Design: Danielle Wertz Editor: Hannah Spear © 2012 National Multiple Sclerosis Society, Western Pennsylvania Chapter
CONNECT WITH US ONLINE: Western Pennsylvania Chapter nationalMSsociety.org/pax pax@nmss.org Like us: /MSWesternPA Follow us: @MSWesternPA Watch us: user/NationalMSSociety
CONNECTION KILLS MS
Visit www.MSConnection.org and register today. n
MS CONNECTION COMMUNITY WHAT IF EVERYONE WHO CARES ABOUT MS COULD JOIN TOGETHER IN ONE PLACE?
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ADVOCACY
WE NEED YOU!!! • Are you a person with MS? • Do you have a connection to anyone living with MS? • Are you passionate about increasing awareness and understanding of this disease? • Do you have a connection to officials or people who are agents of change? • Are you interested in researching and recommending legislative strategies that would aid the needs of people with MS? • Do you want to bolster your professional skills in the areas of networking, strategic decision making and community leadership?
If you answered “YES” to any of these questions, the Government Relations Committee wants you! The PA Government Relations Committee is a group of people who wish to move forward the National MS Society’s Activism agenda. We need passionate, strategic and engaging people, who are interested in enhancing the quality of life for people affected by multiple sclerosis. These volunteers, along with fellow committee members, must be willing to forge or strengthen essential relationships with policymakers and local policy officials. GRC members will be trained and will receive support from policy staff and peers. if this appeals to you, We Need You to review the job description, coplete the GRC Interest form and send it back to Karen.Mariner@nmss.org. To read the job description and complete the interest form, follow this link: http://www.msactivepa.org/ n
04 ADVOCACY
CONTINUING CONNECTIONS
MSCONNECTION: FALL 2012 MS CONNECTION: SUMMER islators return to their districts. Are you unclear about the public policy priorities in our state? Contact us to learn more. To learn more about federal priorities, visit www.nationalMSsociety. org/advocacy. Remember to write a “thank you” note to officials for meeting with you and follow up on any unanswered questions or promises. Did you take a picture during your visit? Include it with your handwritten note. Or, upload your picture and post your status on Facebook, Twitter or your blog. Find and follow your lawmakers on Facebook and Twitter, too.
MS ACTIVISTS MEET SENATOR MARY LANDRIEU (AT RIGHT) This spring, MS activists helped raise awareness for MS issues at the Society’s Public Policy Conference and MS State Action Days. Activists travelled to Washington, D.C., or converged at more than 30 state capitals across the country to advance federal and state policies and programs that could impact the lives of people with MS. Hundreds kept in-person appointments with their elected officials and linked their experiences with MS to important policy and program priorities. So, what’s next? How do we remain on the frontline to drive change? We can continue to create connections — with lawmakers, the media, and each other. Make plans now. Schedule an appointment or attend an in-district listening session. Summer months are ideal for “meet ’n’ greets” when leg-
Tell your family, friends and neighbors why you’re an MS Activist. Connect. Follow www.MS Activist.blogspot.com and keep track of our nationwide MS activism progress on Twitter at: @MSActivist. Join an MS Community at www.MSconnection .org. Here, it is all about making meaningful connections, with easy access to the best content and resources the MS community can bring. Find information about the topics most important to you, share experiences, connect with people the way you want, and have expert MS information and opinions right at your fingertips. Learn more about current events, the economy and social and political priorities. Become an informed voter. And, cast your ballot in November! Renee Vandlik is the Society’s director of State and Local Government Relations. n
NATIONALMSSOCIETY.ORG | 1-800-344-4867 individuals have MS have resulted in new information that potentially links genetic factors related to vitamin D activation. In December, Canadian and British researchers published the results of a study that set out to look for rare genetic changes that could explain strong clusters of MS in some families. They studied DNA in 43 individuals selected from families with four or more members with MS. The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being of interest. The CYP27B1 gene plays an important role in converting Vitamin D to a biologically active form. The researchers then looked for the same rare gene variant in over 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this variant along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene.
THE ROAD FORWARD Further research now underway will determine if vitamin D may have preventative as well as disease-modifying effects. In EAE, the animal model of MS, vitamin D supplementation prevents and slows the progression of the disease, while vitamin D deficiency worsens the disease. We also know that high vitamin D levels in people with MS have been associated with decreased risk of exacerbations and less severe disability. To what extent vitamin D can influence the course of MS once someone’s been diagnosed is still unclear; however, research is being planned to clearly define the role of vitamin D in the pre-
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vention, progression and treatment of MS. For instance, researchers at Johns Hopkins University are leading a multicenter controlled clinical trial funded by the Society to determine whether high-dose vitamin D added to standard therapy with Copaxone further reduces disease activity in people with MS. (To learn more about this trial, which is still recruiting participants, visit www. clinicaltrials.gov/ct2/show/NCT01490502.) What is clear is that vitamin D deficiency is extremely common in many parts of the country. The optimal approaches for vitamin D supplementation in the general population and in those with MS have not been established, yet it is important that everyone take a minimum daily amount of vitamin D supplement. I recommend at least 2,000 IU and no more than 4,000 IU per day for my own patients with MS; however, official recommendations are lower (see www.ods. od.nih.gov/factsheets/VitaminD-QuickFacts), so ask your healthcare providers what they recommend for you. Due to the inherited risk of MS and the possible preventative effect of vitamin D supplementation, also discuss the possible implications of vitamin D deficiency and supplementation for your children. n Dr. Linda Buchwald is chief of Neurology at Mount Auburn Hospital in Cambridge, Mass., and the medical director of the Mount Auburn Hospital Multiple Sclerosis Care Center. She is a trustee of the Society’s Greater New England Chapter and Clinical Advisory Committee member. Article originally appeared in Greater New England Chapter’s Spring 2012 MS Connection.
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MS CAUCUS The Congressional MS Caucus are dedicated members of the U.S. Congress who raise awareness about MS on Capitol Hill and together, seek creative federal policy solutions to the challenges facing people living with MS and their family caregivers.
Our goal is 100% participation - you can help us get there! Current MS Caucus Members:
MSCONNECTION: FALL 2012 MS CONNECTION: SUMMER Steve Rothman (NJ-9) Jon Runyan (NJ-3)
IS YOUR REPRESENTATIVE A MEMBER OF THE MS CAUCUS?
Don’t see your representative on the list? Contact Karen Mariner to find out how you can encourage your representative to join the caucus. Email Karen.Mariner@nmss.org or call 215-271-1500. n
PA Senate: Senator Bob Casey NJ Senate: Senator Robert Melendez PA House: Jason Altmire (PA-4) Mike Critz (PA-12) Mike Doyle (PA-14) Tim Holden (PA-17) Tim Murphy (PA-18) Joe Pitts (PA-16) Todd Platts (PA-19) Allyson Schwartz (PA-13) NJ House: Rob Andrews (NJ-1) Scott Garrett (NJ-5 Rush Holt (NJ-12) Frank LoBiondo (NJ-2)
US CONGRESSMAN MIKE DOYLE MEETS WITH MS ACTIVISTS (NANCY WEILAND & JOHN PLATT) ON AUGUST 16, 2012.
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08 LIVING WITH MS
WITH A LITTLE SUPPORT BY VERONICA MCTIERNAN For several years after I was diagnosed with multiple sclerosis in 2004, I insisted that I did not need any assistive aids in order to continue living my life as I wanted. At first, my MS affected me minimally. I had some balance issues, and some weakness on my right side. I walked with a little hippity hop, but did not trip, was able to do stairs as long as there was a rail or a friend to lean on, and could walk a fairly good distance. These activities often wiped me out, but I could do them, and that is what I focused on. I routinely dismissed using a cane, saying I didn’t need it and was able to do just fine without it, but in reality it was pride that was playing with my head. I simply did not want others to see me using an assistive aid.
VERONICA WITH HER “GARDEN CANE.”
Then one day in 2006, I happened to find a cane in my closet that I had been storing for
MSCONNECTION: FALL 2012 MS CONNECTION: SUMMER 2012 someone else. I decided to use it to walk along my uneven yard to fill the bird feeders. Then I started using it while gardening to help me get up and down and in and out of flower beds. Yes, I was self-conscious about what the neighbors would think, but I felt the freedom of using the cane immediately, and I soon started calling it my “garden cane.” However, other challenges began cropping up. While my garden cane helped, it didn’t address my fatigue when digging with a regular shovel or garden fork. I needed both hands to manage these heavy tools, which left me no arm to use to lean on anything and no strength to dig while standing. My Internet searches for “adaptive gardening” only brought up suggestions of raised flower beds. This didn’t help me with my already-established perennial beds, so I would just get discouraged and think I had to settle for a half-hearted garden full of weeds. Then one day I thought to search for “adaptive gardening TOOLS.” I learned about ergonomic tools with extensions and cuffs for attaching to one’s forearm. Now I could successfully garden with one hand while standing (and leaning on my garden cane, of course!). The hand tools also gave me the leverage I needed, and the garden seat I ordered completed the package for me. The first day I got the tools I spent two hours in my garden, and I did so much work that I got a blister on my thumb. It was a badge of accomplishment for me: (continued on next page)
NATIONALMSSOCIETY.ORG | 1-800-344-4867 my first gardening blister in 10 years. I was delighted that what I felt when I finished was a very satisfied tiredness, and not the dreaded MS fatigue. My new mantra? “I cane so I CAN.” Now, without embarrassment, I can whip out my collapsible cane from my bike bag after completing a ride on my bicycle if I feel the need. Or I can use a PINK cane to match my dress for my niece’s wedding. I wish I didn’t have MS, and I dream of gaining back what I have lost, but in the meantime, I will continue to use my cane, adaptive gardening tools and whatever else I find I need. Where I used to see assistive aids as pointing out my weaknesses, I am now so aware of them being just the opposite. They allow me to be who I am, and to do what satisfies my soul. What else is there in life? n Veronica McTiernan works as a behavior therapist with people with developmental disabilities in Westchester County, N.Y. Besides gardening, she enjoys biking, adaptive skiing and being in the great outdoors with her friends and family. Consult a physical or occupational therapist about mobility devices that will work best for you, and how to use them safely. An OT will also be able to recommend both low- and high-tech assistive aids for various activities of daily living—call the Society at 1-800-344-4867 for referrals. For more information about the range of assistive aids available, search for “assistive devices” at www.nationalMSsociety.org or browse www.abledata.com.
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MSCONNECTION: FALL 2012 MS CONNECTION: SUMMER
SPECIAL EVENTS
WALK MS 2013: SAVE THE DATE As 2012 comes to a close, the Western PA Chapter is already hard at work planning for the 2013 Walk MS Season. Great things are happening in 2013, so mark your calendars now!
April 21, 2013 Bedford Dubois Hollidaysburg Indiana Pittsburgh April 27, 2013 Grove City Johnstown April 28, 2013 Beaver Greensburg Washington
May 5, 2013 Franklin May 18, 2013 Bradford May 19, 2013 Meadville Warren TBD Uniontown
May 4, 2013 Erie
SPECIAL EVENTS
GOLFING FOR MS The 3rd Annual Erie Golf MS was on Saturday, August 24, 2012 and what a beautiful day it was, from start to finish! The scramble format golf tournament was held at the scenic Riverside Golf Course in rustic Cambridge Springs PA. It was a full course with 116 golfers swinging their clubs for MS and a dozen volunteers selflessly giving up their day to lend a hand for our cause. Highmark Blue Cross Blue Shield was our presenting sponsor, along with several other area businesses donating sponsorship dollars. Every aspect of support was tremendous and participation was
fantastic, it was fun day all around! We were able to raise over $18,000 to help us in our mission, to create a world free of MS. n
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SPECIAL EVENTS
DIY FUNDRAISING A ‘PEAK’ PERFORMANCE Each year, hundreds of people come to the Society with creative ideas to fundraise that go far beyond the Society’s signature fundraising events. DIY Fundraising speaks to the communities and event participants who want to customize a fundraising event to match their lifestyle and passion. Western Pennsylvania is no different to the rest of the country’s growing trend to DO – IT – YOURSELF. Throughout the summer, people have created some fun and fantastic events with the help of DIY Fundraising. Mark Magalotti, of Mt. Lebanon, “Rode to the Rockies” for one of our DIY events in which Mark and two friends embarked on their longest crosscountry journey yet, to reach their ultimate destination of the Colorado Rockies. Mark wanted to do something special while simultaneously raising money for the Western Pennsylvania Chapter of the National Multiple Sclerosis Society. Mark conquered the Rockies and used our new DIY online program as a fundraising tool by creating a personal event page, sending out emails, explaining his fundraising activity and to secure donations. Mark’s wife, Roni, was diagnosed with multiple sclerosis 10 years ago and Mark wanted a creative way to raise money, so he hopped on his bike and took off for a trip of a lifetime.
(Pictured from left to right: Richard Wilt, Roni Magalotti, Mark Magalotti and Larry Souleret)
Some of the other events that emerged out of DIY Fundraising this summer include Chico’s Shop for Cause in July and Jessica Grey’s Kiss MS Goodbye Benefit for a Cure. The Society has all the tools to help anybody that would like to raise awareness and critical funds through a DIY event. The DIY platform allows participants to expand their fundraising efforts and also access online donation pages as well as marketing materials unique to their own event. If you are interested in planning your own event please contact Susan, DIY Coordinator at susan. cook@nmss.org or 412-261-6347 for more information and help getting started today! n
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THE 2012 BIKE MS SERIES Have you ever been part of something bigger than yourself? Have you ever stepped into a role that was challenging, ultimately scared you, but brought you joy and excitement? We are proudly able say a collective “YES!” We are happy to report on the 2012 Bike MS: Series, including Bike MS: Western PA Escape, the Keystone Country Ride and our upcoming Cook Forest River Ride. The great success of all three of our Bike MS rides enables us to create awareness and raise critical funds that move us closer to a world free of MS.
MSCONNECTION: FALL 2012 MS CONNECTION: SUMMER 2012 season is not over. We are gearing up for the last installment of the Bike MS: Series, the Cook Forest River Ride. By the time you read this article, more than 500 cyclists will have made their way to scenic Cook Forest State Park to enjoy a oneday ride on a gently rolling route along the Clarion River. We are forever thankful to all the people who played a part in making the 2012 Bike MS season a success. From cyclists and volunteers, to sponsors and supporters, we are proud to call these people a part of our Bike MS family. n
In June, over 1,400 cyclists accepted the 2-day 150 mile challenge of Bike MS: Western PA Escape. Despite hot weather cyclist’s spirits remained high and even grueling Western Pennsylvania terrain was unable to shake cyclist’s determination. A total of over $930,000 has been raised thanks to our dedicated Bike MS: Western PA participants and supporters. In July, nearly 550 cyclists came together to embark on a 2-day, 150 mile loop through the rolling hills of central Pennsylvania. State College provided and unbeatable place to celebrate the first day’s accomplishments while luxurious overnight accommodations geared cyclists up for another full day of riding. More than $420,000 has been raised thanks to our dedicated Bike MS: Key Stone Country Ride participants and supporters. Despite summer nearing its end, the Bike MS
*Special thank you to FedEx Ground, presenting sponsor of Bike MS: Western PA Escape*
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MS CONNECTION: SUMMER 2012 MSCONNECTION: FALL 2012
CHAPTER NEWS
KIDS CAMP 2012 The Western Pennsylvania Chapter would like to thank everyone who helped make the 2012 MS Kids Camp possible! (Pictured: the Western Pennsylvania Chapter attendees of the 2012 MS Kids Camp)
As the holiday season is upon us, it is time to begin thinking about our Annual Holiday Program! Each year the NMSS coordinates this program to provide fists to people with MS who reside in long term care facilities. Knowing that nursing homes and personal care homes can be lonely places, our goal is to put a smile on the face of these individuals and let them know that the Nation MS Society is thinking of them. Our goal is to match each person living with MS with a gift donor. Last year we provided gifts to over 200 individuals. This year, we hope to increase that number – so we are asking for your help.
Helping People Live Life Better!
Service...Knowledge...Commitment
Standard & Complex Rehab Mobility Equipment and Positioning Devices Equipment Repair Service Center Vast Inventory of Wound - Ostomy - Urological Supplies Oxygen - CPAP/BiPAP - Ventilators - Nebulizers & Neb Medications Accessibility Consultation & Equipment - Stair Lifts - Ramps - Vehicle Lifts Pharmacy Services - Consultations - Certified Immunization Pharmacists Contracted with Major Insurances ... PA, OH, NY, and WV Medicaid Direct Delivery and Shipping
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Get involved any of the following ways: “adopt” a person with MS in a facility, make a monetary donation so that we can purchase “wish list” gifts, donate items that can be used to fulfill wishes (we’ll even have a place you can drop off donated presents at our annual meeting!) and volunteer with us to deliver gifts to persons
We challenge you to make a commitment to this great program and to directly impact a person’s life this holiday season. Please contact Pam Dixion at pam.dixon@nmss.org or call at 412-2616347 for additional information. n
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ANNUAL HOLIDAY GIFT PROGRAM
with MS in area nursing homes.
Servi
CHAPTER NEWS
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Saturday, November 17, 2012
CHAPTER NEWS
ANNUAL MEETING AND HEALTH FAIR
Pittsburgh Marriot North 100 Cranberry Woods Drive Cranberry Township, PA 16066
9:30 am:
Registration
10:00 am 12:00 Noon:
Vendor Displays – Visit a variety of community booths, medical equipment companies and much more. Round Table Education Sessions and have an opportunity to learn about DIY Fundraising, Walk MS and Bike MS and other special events. “Ask the Health Care Provider Booth” you will have an opportunity to ask questions regarding symptom management, legal and employment issues, rehabilitation and therapy and much more!
12:00 Noon 2:00 pm:
Sit Down Luncheon with Keynote Speaker, Dr. Erica Grazioli. Research/Treatment Update, Board Election, Treasurers Report Persons with MS: Free /// Guests: $20.00
RSVP by November 8, 2012 Call: 800-344-4867 | Online Registration: nationalMSsociety.org/pax | Mail RSVP (below) First and Last Name: ___________________________________________________________ Number attending: ____________________________________________________________ Number of vegetarian dishes: _____________________________________________________ Number of additional guests ($20 each): ____________________________________________ Total enclosed: ________________________________________________________________
MAIL RSVP TO: National MS Society, Western PA Chapter, 1502 Reedsdale St, Ste 105, Pittsburgh, PA 15233
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047
Western PA Chapter 1501 Reedsdale St., Ste. 105 Pittsburgh, PA 15233
WESTERN PENNSYLVANIA CHAPTER OFFICES Central Office
1501 Reedsdale St, Ste 105 Pittsburgh, PA 15233 (412) 261-6347 or 1-800-344-4867 Fax: (412) 232-1461
Erie Branch Office 2115 W 8th Street Erie, PA 16505 (814)-464-2900 Fax: (814) 464-2804
Keystone Branch Office 506 Third Avenue Duncansville, PA 16635 (814) 696-1017 Fax: (814) 696-1069
Proudly serving the following counties: Allegheny, Armstrong, Beaver, Bedford, Blair, Butler, Cambria, Cameron, Clarion, Clearfield, Crawford, Elk, Erie, Fayette, Forest, Greene, Indiana, Jefferson, Lawrence, McKean, Mercer, Somerset, Venango, Warren, Washington, Westmoreland