Moving Toward A World Free of MS Fall 2010
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
KEEP THE
HOLIDAYS FROM
Stressing YOU OUT
Society Outlines Advocacy Priorities for 2011 Texas Legislative Session
Medical Meetings in San Antonio Focus on
Research Progress and Clinical Care Yoga Provides Calm in Busy World
If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
The official magazine of the National Multiple Sclerosis Society: Lone Star Austin • Dallas • Fort Worth • Houston • San Antonio
1-800-344-4867 Board of Trustees Chairman Brad Robbins Secretary Mark McLeland Treasurer Gerald Merfish Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2010 National Multiple Sclerosis Society: Lone Star
multiple sclerosis and about current research that may one day reveal a cure.
MS STOPS PEOPLE FROM MOVING
WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT
The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. 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. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
Fall 2010 Volume 4 • Issue 3
TABLE OF
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
CONTENTS
The Official Magazine of the National Multiple Sclerosis Society: Lone Star
20 ‘Tis The Season to Keep the Holidays from Stressing You Out
Letter from the Editor . . . . . . . . . . . . . . . . . . . . . . . . . 4 Self-Help Groups Offer Support. . . . . . . . . . . . . . . . 7 Help Bag MS with Your KrogerPlus Card. . . . . . . . 8 MS Activist Spotlight: Jennifer Ziegler . . . . . . . . . 13 2010 Advocacy Year-In-Review . . . . . . . . . . . . . . . 14
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Society Outlines Advocacy Priorities for 2011 Texas Legislative Session
Society Awards 2010 Scholarships to Lone Star and Louisiana Students . . . . . . . . . . . 16 Society Salutes Local 2010 Top Scholars . . . . . . . 18 Volunteerism Increases at Fastest Pace in Six Years . . . . . . . . . . . . . . . . . . . . . . 19 Make Your Mark Monthly . . . . . . . . . . . . . . . . . . . . 25 Monthly Teleconference Series . . . . . . . . . . . . . . . . 26
28
Yoga Provides Calm Moments of Well-Being in Busy World
Research: Possible Basis Found for Depression in Persons with MS. . . . . . . . . . . . . . . . 31 Research: Trainees Connect at Tykeson Fellows Conference. . . . . . . . . . . . . . . . 35 Research: Oral Drug Study at UTSW in Dallas. . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 Year-End Giving Helps Others All Year Long . . . . 37
32
Bike MS: Valero . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Medical Meetings Focus on Research Progress and Clinical Care
Houston Resident Has a Ball in Paralympic Competition . . . . . . . . . . . . . . . . . . 40
Fall Walk MS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Community Events are Cookin’. . . . . . . . . . . . . . . . 42 Closing Thoughts . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
Moving Toward A World Free of MS
3
F RO M T H E EDI T OR
Year In and Year Out, It’s About Time How can winding down get us so wound up? As we mark off the remaining pages on our 2010 calendars, the months of October, November and December often constitute the quickest quarter of the year. Time, of course, is entirely relative; as kids, anticipation for the holiday trifecta of Halloween, Thanksgiving and Christmas made time pass as slowly as a snail towing a turtle – uphill. For many adults, however, the ringing in of another holiday season spurs the annual question, “Where did the year go already?” In this edition of your MSConnection, we aim to put time on your side with tips on coping effectively with holiday havoc and seasonal stress. We also have a host of articles to guide you through the remainder of 2010 and into 2011, from becoming an MS advocate in the new legislative session and boosting your health with local wellness classes to cooking up community events and teaching a generation of scholars that they can realize their dreams of going to college. You’ll also read about a few of our friends at the National MS Society – such as Paralympic athlete James Sweatt, activist Jennifer Ziegler, volunteer Amber Kocian, Bike MS: Valero rider Fred Gibbons and Walk MS participant Jennifer McDaniel, among many others – who are making their timely marks on our world. It’s time to keep moving, so turn the page – literally – for a healthy and happy season.
James Black
MSConnection Editor james.black@nmss.org National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 4
MSConnection • FALL 2010
Registration Gets Rolling for New Season of Bike MS Registration opens this fall for two highly-anticipated 2011 Bike MS fundraising events: the Houston-toAustin BP MS 150 and the Friscoto-Fort Worth Bike MS: Sam’s Club rides. Combined, more than 16,000 registered cyclists and 4,000 volunteers take part in the annual spring treks through Texas. The BP MS 150 and the Bike MS: Sam’s Club events raise funds to propel MS research and vital services for men, women and children living with multiple sclerosis. The 2011 BP MS 150 is scheduled for April 16-17, while the 2011 Bike MS: Sam’s Club is set for April 30-May 1. Sign up, volunteer or donate by visiting bikeMStexas.org today.
Nominees for Board of Trustees Now Being Accepted Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with name, mailing address, e-mail address and phone number. Nominees will be notified of board member expectations, responsibilities,
fiduciary and time commitments. Final candidates will be interviewed by a member of the Governance Committee. Nominations for the Board of Trustees must be submitted by Nov. 15, 2010 to: Mark Neagli, National MS Society, 8111 N. Stadium Drive, Houston, Texas 77054. Moving Toward A World Free of MS
5
It’s a Date for Dallas and Houston On the Move Luncheons On the Move is a nationwide program created to raise funds and awareness for MS. Each year, On the Move luncheons help educate communities about multiple sclerosis and encourage people to give to support family members, friends and colleagues. In five years, this program has touched the lives of 1,500 Texas women and raised more than $350,000. National MS Society On the Move Luncheons Friday, Nov. 5, 2010 Ritz-Carlton • Dallas, Texas Speaker: Alexandra Wilkis Wilson, founder and chief marketing officer with Gilt Groupe Wednesday, March 2, 2011 Hotel ZaZa • Houston, Texas Speaker: Cami Walker, author of 29 Gifts: How a Month of Giving Can Change Your Life For details or to purchase tickets, contact Strategic Philanthropy Director Taylor Mallia at 713-394-2970 or taylor.mallia@nmss.org.
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MSConnection • FALL 2010
Take Steps This Fall to Move Closer to a Cure Step. Stroll. Scoot. Skip. Scamper. Skedaddle. However you move it, it’s time to lace up your sneakers for a Fall 2010 Walk MS near you. Join the movement this October and November to help Texas families affected by multiple sclerosis. This fall, the National MS Society is stepping up for Walk MS in the following Lone Star communities: Austin ~ October 24 Tyler ~ October 30 Kemah ~ November 6 Katy ~ November 13 Sugar Land ~ November 13 The Woodlands ~ November 13 Downtown Houston ~ November 14 Each Walk MS is held in an accessible location to ensure everyone can take part, regardless of any mobility issues. Participants and volunteers enjoy free refreshments and family-friendly entertainment. Many sites also welcome leashed canine companions. Registration is free. While there is no minimum pledge, registered participants have opportunities to receive fundraising prizes such as T-shirts, jackets, luggage and more. Visit walkMStexas.org for registration and details. Information on the Spring 2011 Walk MS series in Corpus Christi, Dallas, Fort Worth and San Antonio is also available at walkMStexas.org.
Self-Help Groups Offer Both In-Person and Phone Support by Susan La Combe
S
elf-Help Groups offer opportunities to make new friends and share with others how you experience life with MS. Meetings provide settings to share common concerns, give and receive emotional support, and receive MS-related information from peers
and guest speakers. Self-Help Groups are facilitated by trained volunteers with personal experiences with MS. To find a group that meets in-person near you, call the National MS Society at 1-800-344-4867.
The Society also offers several Self-Help Groups that meet by phone, giving you the opportunity to join in from the comfort of your own home Phone Group Name
Meeting Day/Time
Call-In Number
Home is Your Range
1 p.m. Central 1st Wednesday of month
1-888-346-3659 (enter code 1073)
MS and Cancer
3 p.m. Central 4th Wednesday of month
1-888-346-3659 (enter code 1073)
Stay at Home Support for those living with MS for five years or more
11 a.m. Central 3rd Wednesday of month
1-888-346-3659 (enter code 64552)
Susan La Combe is Programs and Services Manager in the Society’s Dallas office. She can be reached at susan.lacombe@nmss.org.
Moving Toward A World Free of MS
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Help Bag MS with Your KrogerPlus Card When you use your KrogerPlus shopping card, you can help the National MS Society raise money for research. Take the Customer Letter on the facing page with you the next time you shop at your neighborhood Kroger grocery store. The cashier will scan your KrogerPlus Card and the bar code on the letter. You only have to get the letter’s bar code scanned once.
That’s all there is to it. Note that you must do this even if you scanned the Customer Letter for your Kroger card last year. Use this new bar code so the Society can continue to receive contributions.
Clip the Customer Letter on the facing page and take it with you the next time you shop at your neighborhood Kroger grocery store. 8
MSConnection • FALL 2010
Customer Letter Step One:
Read through this letter to understand the advantage of being a part of the Kroger Neighbor to Neighbor Donation Program.
Step Two:
Take the letter with you to your neighborhood Kroger store the next time you go shopping.
Step Three:
Present the letter with your organization’s barcode to your cashier upon checkout. After they have scanned your KrogerPlus Card you will be enrolled for the current year of the Kroger Neighbor to Neighbor Donation Program. Every time you shop at Kroger and use your enrolled KrogerPlus Card, Kroger will contribute a percentage of your eligible purchases to the Kroger Neighbor to Neighbor Donation fund. Once a card is scanned with the barcode, it will be active for the remainder of the program year.
Q&A
How many Kroger Neighbor to Neighbor accounts can an organization have? One per organization.
Can a household “link” their KrogerPlus Card to more than one organization at a time? No, the system allows for one organization per household. To change organizations, you must present your KrogerPlus Card and the new organization’s barcode to the cashier.
Do I have to enroll each program year?
Yes, all organization’s and participants must re-enroll for each program year. Enrollment is June 1, 2010 through Dec 31, 2010 The Neighbor to Neighbor Program accumulation is July 1, 2010 through April 30, 2011.
How much can my organization earn?
The Kroger Neighbor to Neighbor Donation Program will donate $1 million annually. Each organization will earn a percentage of the $1 million equal to the percentage of total earned contributions attributable to that organization.
Kroger Cashier: 1. Scan customer’s KrogerPlus Card 2. Scan the attached Organization’s barcode. The customer’s KrogerPlus Card is now enrolled in the Kroger Neighbor to Neighbor Donation Program & contributing funds to their organization. When you scan the barcode, the description on the receipt will “Loyalty Div 0.00”. This means the barcode was properly scanned. The following Friday, the customer’s receipt will display a message at the bottom of the receipt saying “Your card is contributing
to Neighbor to Neighbor #12345”
NATIONAL MS SOCIETY LONE STAR
Please feel free to contact a Kroger Neighbor to Neighbor Donation Program Representative with any additional questions at 866-995-7643 or email to neighbortoneighbor@kroger.com. Additional information is also available at www.krogerneighbortoneighbor.com.
ADVO C A C Y
Society Outlines Advocacy Priorities for 2011 Texas Legislative Session by Linnea Nasman
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MSConnection • FALL 2010
As MS activists, the National Multiple Sclerosis Society and individuals nationwide relentlessly advocate every day to advance federal, state, and community policies and programs that could impact the lives of persons with MS.
I
n January 2011, the Texas Legislature will reconvene for its 82nd session. Texas activists will take action to advocate policy issues that benefit people with MS and their families.
The 2011 Texas Legislative Session Priorities are: Family Caregiver Support Last session, Texas legislators created a program to support family caregivers whose loved ones do not receive services through any other state program. Respite is one of the services most frequently requested by informal caregivers to help them continue to provide at-home care. It offers caregivers a much-needed, shortterm break from their responsibilities. This new program connects families to services they need, creates public awareness and provides vouchers to pay for respite services. In tight budgetary times, programs such as the Texas Lifespan Respite Care Program save the state money by supporting family caregivers so they are able to maintain their employment while caring for loved ones, delaying or preventing institutionalization that is so devastating to families and costly for the state. The Society is asking the Texas legislature to continue and expand
support for family caregiver respite programs. Banning Discretionary Clauses Discretionary clauses, or deceptive and unfair language that makes it easier for insurance companies to deny benefits to consumers, are found in most disability and health insurance policies. Society staff and activists, including an individual who was denied benefits because of a discretionary clause, have spoken at public hearings in support of a ban on these clauses. This past spring, the Texas Commissioner of Insurance proposed a new rule that protects Texans and would make our state one of 22 others to disallow these clauses. We expect a decision on the proposed rule in late 2010 and will continue to monitor the rule in 2011. Continuity of Prescription Drug Coverage Prescription drugs are one of the fastest growing health care costs in the United States. Many health care consumers – including those with good insurance – are subject to health insurance rules that allow plans and policies to change the co-payment requirements for prescription drugs at any time during the course of Moving Toward A World Free of MS
11
the contract year. When these costs go up, people living with a chronic illness, like multiple sclerosis, often face difficult choices between filling their prescriptions and paying for life’s necessities. Some may be forced to go without essential medications or switch drugs for reasons having nothing to do with their health. To protect Texans from unexpected increases in their outof-pocket costs, insurance companies should be prohibited from changing the co-pay for a drug within the contract period. Any individual who depends on prescription medications should be able to rely on their contracts and the insurers’ drug formulary when selecting a health plan for a contract year. Providing this consistency is a safeguard that is essential to maintaining access to vital and often life-saving medicines.
based insurance design (VBID). The basic idea of VBID is to remove barriers to essential, high-value health services and maximize health outcomes with available health care dollars. Instead of asking patients to pay more for all of their care, as is currently the case, a VBID plan adjusts out-of-pocket costs based on an assessment of the clinical benefit – not simply the cost – to a specific patient population. For example, patients with multiple sclerosis would pay less for their disease-modifying drugs. The goal of VBID is to get more health out of every health care dollar.
Value-Based Insurance Design Lastly, acknowledging that U.S. health care costs have skyrocketed, the Society is further investigating an approach to balancing cost and quality called value-
Linnea Nasman is Programs and Government Affairs Coordinator with the Society’s Austin office. She can be reached at linnea.nasman@nmss.org.
Learn more about these advocacy issues and how you can get involved by visiting JointheMovementLoneStar.org/advocacy or by calling the National MS Society at 1-800-344-4867 (press 2).
Take Action and Make Your Voice Heard As an MS activist, you can: Put a face on legislative issues by sharing your personal story. •••••• Raise awareness and inform others about MS issue priorities. •••••• Inspire more people to become MS activists. To learn more or to join the Texas Advocacy Action Network, visit JointheMovementLoneStar.org/advocacy or call 1-800-344-4867 (press 2).
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MSConnection • FALL 2010
MS Activist Spotlight:
ADVO C A C Y
Jennifer Ziegler Pictured: MS activist Jennifer Ziegler and National MS Society Regional Executive Vice President Mark Neagli
When were you diagnosed with MS? I was diagnosed with MS in September 2004. How did you become involved in advocacy? It was a gradual process. At first, I was reluctant to become involved, because I was still coping with the diagnosis. Then, an advocacy volunteer contacted me over Facebook to see if I wanted to deliver event invitations to the Capitol in Austin. It was perfect timing; I thought, “Sure, I can do that. It doesn’t sound too scary.” At that point, I was ready to step out and get involved. I gathered a group of friends and went to the Capitol. We delivered the invitations, met legislative staff in each office and had a fun day. The experience felt good and I loved meeting people at the Capitol. From there, it snowballed and I continued to get involved. Being an activist has given me a sense of empowerment and confidence. What fears did you have to overcome? When I first went to the Texas Public Policy Conference two years ago, everyone was taking lots of notes. I felt like I needed to know every little detail to be able to advocate. I think everyone might feel a bit intimidated at first or get scared away because they think they don’t know enough. What I quickly learned is that you sometimes have only two minutes of a person’s time. Details are important, but what’s even more important is your story. They want to learn about you and why an issue is important
to people with MS. It’s about having a conversation, making a personal connection and building a relationship.
What would you say to others who might be interested in joining the advocacy movement? Being an MS activist is empowering. Give it a try. Advocacy is contagious. Everyone has an important story to tell, so you just can’t help but jump on board when you see how it works. Advocacy is like putting together the pieces of a puzzle; every part interconnects. All you need to give someone is a little encouragement and direction. It’s especially important for people with MS to feel like someone understands their concerns and is listening, and you can get this by reaching out to your legislator and sharing your concerns. What issue or policy is most important to you? The family caregiver respite issue is near and dear to my heart. If I could wave a magic wand, I would make sure all caregivers had every benefit that the state would allow. For people living with MS, caregiving is a basic need and many families struggle to provide that care. It just makes sense to work at all levels to support a family member who is giving that care to a loved one. Any advice for other advocates? Get to know your legislator’s staff. Building a relationship with the receptionist or the other staffers – and knowing if they have personal connections to MS – helps open the door. Moving Toward A World Free of MS
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ADVO C A C Y
Change Happens Through Activism:
2010 MS Advocacy Year-In-Review
by Linnea Nasman
I
t takes dedicated activists and coordinated actions to change public policy and to make life better for people living with MS. Whether you wrote a letter to your legislator, reached out to others to create awareness or engaged new people in the movement, it’s the collective efforts of MS activists that made all the difference this year. Our advocacy successes are made possible by those who know that change happens through activism. Among our successes and milestones in Fiscal Year 2010: On a national level, the Society participated vigorously in efforts to achieve U.S. health care reform by advocating for issues related to the Society’s National Health Care Reform Principles. These principles include eliminating disparities in care, ensuring affordable health care coverage and allowing access to high-quality, long-term support 14
MSConnection • FALL 2010
and services. The Society celebrated the 20th anniversary of the Americans with Disabilities Act (ADA), legislation that ensured the civil rights of people with disabilities and expanded opportunities by reducing barriers and shifting perceptions. The Society reaffirmed its commitment to advocating for people with disabilities and pushing for full implementation of ADA law. With significant efforts from MS activists, the Society gained support for $15 million for MS research in FY2011 through the Congressionally Directed Medical Research Program. Texas U.S. Representative Michael Burgess has been instrumental in garnering bipartisan support in the House, with more than 95 co-sponsors. The MS and Parkinson’s Disease Registries Act has more than 200 co-sponsors in Congress, including Texas U.S. Representatives Burgess, Culberson, Gonzalez, Green, Hinojosa, Sessions and Thornberry.
The Society is advocating for full funding for the Lifespan Respite Act, which funds state programs to support family caregivers. The support of MS activists continues to create momentum for funding this bill. Twenty U.S. Congressmen representing Texas were visited by five MS activists during the National Public Policy Conference in Washington, D.C. Activists shared their stories and promoted federal policies benefiting people with MS and their families, including family caregiver respite and MS research funding. More than 150 participants attended two town hall meetings in the Burleson and Dallas areas, in partnership with AARP and Cities Aggregation Power Project. These meetings gave individuals opportunities to learn about electric utilities, available consumer protections, electricity assistance programs and other resources, as well as a chance to share their stories by writing letters to their state representatives. MS activists and staff provided testimony at the Texas Department of Insurance on a new rule that would ban discretionary clauses, or language that makes it easier for insurance companies to deny benefits to consumers. These clauses are found in most disability and health insurance policies. The Society is awaiting a decision by the Texas Department of Insurance, with hopes that the state will join 22 others in banning the clauses and helping protect Texans. After months of collaboration with other consumer groups, a new ordinance was passed by the Austin City Council to better protect customers during extremely hot weather, including special customer service for medically vulnerable customers such as those living with MS. Similar models could be used in other
municipally-owned utilities around Texas. The National MS Society helped lead a group of consumer stakeholders at the Texas Public Utility Commission to push for better protections for individuals with chronic, heat-sensitive diseases like MS. These protections would include delaying electricity disconnection and providing easier access to payment plans during the summer months. New rules on consumer protections should be released this year. The Spring 2010 Walk MS series promoted advocacy by highlighting important activist stories and encouraging support for people with MS through government and activism. Walkers had opportunities to learn more about legislative issues and to sign up for the MS Action Alert e-mail network. Seven new members were added to the statewide Government Relations Committee (GRC), which meets monthly to discuss advocacy and policy needs in Texas. These volunteers established and voted on our priority legislative issues for the upcoming legislative session, and will help strategize on implementing these 2011 priorities. Between November 2009 and August 2010, our Action Alert e-mail network grew by 22 percent to more than 6,300 activists. MS activists Kim and Gary Campbell, Linda Coker, and Dee Ryden were inducted into the Lone Star Volunteer Hall of Fame in recognition of their volunteer advocacy efforts.
Linnea Nasman is Programs and Government Affairs Coordinator with the Society’s Austin office. She can be reached at linnea.nasman@ nmss.org.
Moving Toward A World Free of MS
15
Society Awards 2010 Scholarships to Lone Star and Louisiana Students
T
he National MS Society’s scholarship program helps qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The Society established its scholarship program in 2003. In its first year, the program awarded 36 scholarships for a total of $68,000. Since then, this initiative has
continued to grow; in 2010, nearly $1 million was awarded nationwide to 490 scholars. Locally, the National MS Society is pleased to announce the 2010 scholarship award recipients. This year, the Society was able to award 24 new college-bound students – up from 15 students in 2009 – with scholarships ranging from $1,000 to $3,000 each.
2011 Scholarship Applications Available Online Starting Oct. 1, 2010, National MS Society scholarship applications for 2011 are available online at nationalMSsociety.org/scholarship. Applications and supporting materials must be submitted by Jan. 14, 2011. Applicants must plan to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree,
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MSConnection • FALL 2010
license or certificate. Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life. One-year awards range from $1,000 to $3,000. A small number of four-year awards are also offered.
With these new 2010 awards and renewals, the National MS Society is locally providing $114,000 – up from $74,000 in 2009 – to fund Lone Star and Louisiana college scholars. The increase in scholarship funding reflects the Society’s ongoing
commitment to supporting students affected by MS throughout their academic careers. Support comes from foundations, individual donors and the Society’s own employeegiving program.
The 2010 Lone Star and Louisiana scholars (in alphabetical order) and their scholarship amounts are: Elizabeth Blaiszik, Pantego, TX Brandi Brisco, New Orleans, LA Erick Chaves, Houston, TX Lindsay Clark, Baytown, TX Ashlyn Garlanger, Round Rock, TX Ashley Gipson, Shreveport, LA Blair Hoeffner, River Ridge, LA Thomas Howe, Austin, TX Kayla Livingston, Saginaw, TX Shelbie Louviere, St. Martinville, LA Lauren Lyssy, Pipe Creek, TX Ashlee McDonald, Burleson, TX
$1,000 $3,000 $3,000 $1,000 $1,000 $1,000 $1,000 $3,000 $1,000 $3,000 $1,000 $3,000
Kimberly McMillian, New Orleans, LA Daryl Melancon, Vidor, TX Ricardo Montemayor, San Antonio, TX Samantha Navarro, Plano, TX Morgan Ray, Denton, TX Megan Sommerfield, Houston, TX Tyler Stitt, Houston, TX Veronica Tawney, Beckville, TX Valonia Walker, Humble, TX Daniel Whiteside, Austin, TX Matthew Willis, San Antonio, TX Jacob Womack, Texarkana, TX
$3,000 $1,000 $1,000 $1,000 $3,000 $3,000 $1,000 $3,000 $1,000 $1,000 $3,000 $1,000
The Society also renewed scholarships for 29 students awarded in 2009, up from 17 renewals for 2008 awards. 2010 scholarship renewal recipients are: Jillian Bean Sharon Beard Melisa Belvin Joseph Calhoun III Kyrie Cameron Amy Carabes Kasey Childs Heather Dykes Kristin Fields Sharon Finn Jared Greenfield Callie Hill Cara Huggins Allison Hughes Kirstie Landry
$3,000 $3,000 $1,000 $3,000 $1,000 $3,000 $3,000 $1,000 $3,000 $3,000 $3,000 $3,000 $3,000 $1,000 $2,000
Naomi Lopez Machella Luna Matthew McVay Ashley Mitchell Justin Rascher Christopher Ratway Joseph Ratway Rebecca Roberts Scott Salisbury II Richelle Saluga Kelsi Stayart Alexandra Thomas Alexandria Vargas Mary Warren
$3,000 $3,000 $1,000 $1,000 $3,000 $2,500 $2,500 $3,000 $3,000 $2,000 $1,000 $3,000 $3,000 $3,000
Moving Toward A World Free of MS
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Society Salutes Local 2010 Top Scholars Each year, the National MS Society recognizes top scholars from across the United States, based on criteria such as academic performance. The following Lone Star and Louisiana students were recognized by the national organization as 2010 Top Scholars. Morgan Ray National MS Society Mike Dugan Scholar Denton, Texas A four-year scholarship is annually awarded to a top scholar in honor of the Society’s past president and CEO, General Mike Dugan, USAF, retired. Morgan Ray said she never knew her father when he could walk. He was diagnosed with MS when she was two and was using a wheelchair when she was three. She said their unbreakable father-daughter bond is one thing in her life that will never change. Morgan is headed to the University of North Texas to study behavioral sciences and plans to work in medical research. Brandi Brisco New Orleans, La. At seventeen, Brandi was diagnosed with MS and living with her mother in New
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MSConnection • FALL 2010
Orleans when Hurricane Katrina hit. She moved to Georgia to complete her studies and graduate at the top of her class. Although accepted at Georgia State University, she was unable to attend due to an MS flare-up. She now plans to attend New Mexico State University online to avoid the fatigue of attending classes on campus. Her goal is to become an attorney. Daryl Melancon Vidor, Texas Since his father’s MS prevents him from working, Daryl has taken on many daily responsibilities on his family’s farm. Daryl has served as local president of the National Future Farmers of America (FFA) and attended its leadership conference in Washington, D.C. last year. He plans to attend Texas A&M for a degree in agricultural economics.
Despite Economy, Volunteerism Increases at Fastest Pace in Six Years by Klaire Kiehne
A
ccording to a recent report highlighted in The Chronicle of Philanthropy, the number of Americans who volunteer grew last year at the fastest rate in six years, contradicting the idea that the economic downturn had dampened civic participation. The report from the Corporation for National and Community Service noted that 63.4 million adult Americans – almost 27 percent of the U.S. population – volunteered to help charities in 2009, an increase of about 1.6 million volunteers from 2008. In 2009, volunteers donated about 8.1 billion hours of service, valued at $169 billion. An increase in volunteer rates among women ages 45 to 54 and among married women helped further fuel the increase in volunteerism. The report found that the most common volunteer activity was fundraising, with almost 27 percent donating their time to raise money for charitable causes. How did the National MS Society fare locally? • 111 new, skilled volunteers were recruited to support operational needs. • Nine skilled volunteers were engaged through two separate Volunteer Recruitment Task Forces. These volunteers
recruited 35 percent of the volunteers for the Frisco-to-Fort Worth Bike MS: Sam’s Club ride, 20 percent of the volunteers for Walk MS: Addison and 25 percent of the volunteers for the Houston-to-Austin BP MS 150. Additionally, these volunteers participated during the weekend of the events to manage volunteers on-site. • MS Ambassadors attended 41 awarenessbuilding events at corporations, community groups and health fairs across our region. • Recruited volunteers identified approximately 400 new service providers for the National MS Society: Lone Star and updated more than 2,000 records. • Five MS Entrepreneurs grants were awarded to deliver resources to persons living with multiple sclerosis through volunteer engagement. Implementation of these projects is underway. Through this program, for example, Dorinda Harper delivered an educational session to 119 attendees, covering topics that addressed living well with multiple sclerosis.
Klaire Kiehne is Community Development Manager in the Society’s Houston office. She can be reached at klaire.kiehne@nmss.org. Moving Toward A World Free of MS
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C OVER S T OR Y
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MSConnection • FALL 2010
‘TIS THE SEASON TO
KEEP THE
HOLIDAYS FROM
Stressing YOU OUT
by James Black
For anyone with MS, stress can make the holiday season anything but holly and jolly.
T
he impact of stressors varies from one person to the next, just as the effects of multiple sclerosis vary. Researchers agree, however, that it’s crucial for you to determine how to comfortably manage those things that cause you stress so they, in turn, do not exacerbate your MS symptoms.
Moving Toward A World Free of MS
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One of the first steps is recognizing your own stress signals. Physical signs can include rapid heartbeat, sweaty palms, stomachaches, muscle spasms, dry mouth, sleeping too much or too little, headaches and fatigue. Emotional signs of stress can include anxiety, worry, irritability, boredom, depression, nightmares and a feeling of being One of the first overwhelmed. Despite steps is recognizing best intentions, your own stress individuals with can add to signals. Physical signs MS their own stress: in can include rapid an effort to pull off heartbeat, sweaty a perfect holiday and be seen as palms, stomachaches, the host with the muscle spasms, most, you might find yourself facing dry mouth, sleeping dizzying demands. too much or too Work, parties, baking, little, headaches shopping, cleaning, caring and fatigue. for elderly parents or children on school break, and an annual avalanche of activities can individually and collectively take their toll. Holiday stress is often the result of three main trigger points. Understanding these triggers can help you plan on how to best handle them: • Relationships: Your personal and professional relationships can cause
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turmoil, conflict or stress at any time, but tensions intensify during the holidays. Family misunderstandings and conflicts can heighten, especially if you’re all thrust together for several days. Conflicts are bound to arise with so many different personalities, needs and interests. On the other hand, if you’re facing the holidays without a loved one or on your own, you may find yourself especially lonely or sad. • Finances: Like relationships, your financial situation can cause stress at any time, especially when so many individuals and families are affected by the present economic situation. Holiday overspending on gifts, travel, food and entertainment can magnify stress as you try to make ends meet. • Physical demands: The strain of shopping, attending social gatherings and preparing holiday meals can wipe you out, especially when you’re dealing with the daily challenges of MS. Feeling exhausted increases your stress, creating a vicious cycle. High demands, lack of exercise, and overindulgence in food and drink are also volatile ingredients for holiday stress. When stress is at its peak, it’s often difficult to stop and regroup. Being realistic, planning and seeking support can help. Try to prevent stress and depression in the first place, especially if you know the holidays have taken an emotional toll in previous years. You may
even wind up enjoying the holidays more than you initially thought you would. Here are some practical tips for managing your stress during the holidays: • Ask for help when you need it. Make your requests as specific as possible: “Would you please help me by...” • Set realistic goals and learn to say “no.” You don’t have to do anything if you don’t have the time, energy or desire. People will understand if you can’t do certain projects or activities. If you say “yes” only to what you really want to do, you’ll avoid feeling resentful, bitter and overwhelmed. • Realize that, as families change and grow, traditions and rituals often change as well. Hold on to those you can and want to retain, but accept that you may have to let go of others. For example, if your children, grandchildren or friends can’t all gather at your house as usual, find new ways to celebrate together from afar, such as sharing photos, e-mails or phone calls. • Get extra sleep before family gatherings or important events. • Give yourself extra time to get to where you’re going. Expect travel delays, especially if you’re flying. • Do one thing at a time. Don’t feel pressured to do as much as possible. • Schedule rest periods.
• Don’t abandon healthy habits. Some indulgence is OK, but overindulgence only adds to your stress and guilt. • Learn to revise time schedules. If you told a friend that you’d meet at noon to go gift shopping and you’re running late, is there any reason you can’t meet at 1 or 2 p.m. instead? • Seek support. If you feel isolated or down, seek out family members and friends, or community, religious or social services for support and companionship. Consider volunteering during the holidays with the National MS Society or at a community function. Getting involved and helping others can lift your spirits, broaden your friendships and ease your stress.
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In addition, the National MS Society has a variety of documents and Webcasts on identifying and managing stress, relaxation techniques and more. Accessing these • If you’re feeling stressed, share your resources is stress-free: They can be found concerns and responsibilities with others to online at nationalMSsociety.org; simply click lighten your load practically and emotionally. It’s OK now and then to take time just to cry or the link for Living with MS, followed by the link for Healthy Living. express your feelings. You can’t force yourself to be happy just because it’s the holiday season. You can also call the Society for information at 1-800-344-4867 (press 1). This year, take the right • Set differences aside. Try to accept family members Realize that, as families steps so stress doesn’t “Grinch” your holidays. and friends as they are. Be change and grow, Remember, this holiday understanding if others get upset or distressed; chances traditions and rituals season and year-round, you’re in control of your are they’re feeling the effects often change as well. stress; your stress isn’t in of holiday stress, too. Hold on to those you control of you. • Resolutions can set can and want to retain, you up for failure if they’re James Black is the editor of but accept that you may unrealistic, so set smaller, MSConnection and Strategic more specific goals have to let go of others. Communications Specialist with a reasonable time in the Society’s Houston frame. Choose only those office. He can be reached via resolutions that help you feel valuable and that e-mail at james.black@nmss.org or by calling provide more than only fleeting moments of 713-394-2964. happiness. • Enlist support for organizing holiday gatherings, meals and cleanup.
• Seek professional help if you need it. Despite your best efforts, you may find yourself feeling persistently sad, anxious, unable to sleep or irritable. Talk to a health care professional about your concerns or symptoms. A convenient online resource for finding therapists and mental health services is HelpPRO.com.
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Make Your Mark Monthly in Dallas, Houston and San Antonio by Amber Kocian Make Your Mark Day is a monthly volunteering and networking opportunity. It typically takes place from 11 a.m. to 2 p.m. every third Tuesday of the month at the National MS Society’s offices in Dallas, Houston and San Antonio. Lunch is provided.
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hen my uncle was diagnosed with MS several years ago, I realized that I knew next to nothing about the disease. Initially, I called the National MS Society to inquire about teaching yoga classes. In the process, I serendipitously stumbled across Make Your Mark Day. Lee Kilborn, the Volunteer Coordinator in the Society’s Carrollton office, invited me to check it out. I had so much fun that I’ve been volunteering for Make Your Mark Day ever since and currently am the Program Coordinator for Make Your Mark Day in Dallas. Each monthly Make Your Mark Day meeting includes a volunteer project, lunch and a guest speaker. Our guest speakers cover a broad range of topics that may be of interest to people living with MS. One month, we experimented with Laughter Yoga. Another time, we learned to relax with a technique called Guided Imagery. One of our most memorable meetings so far
included a performance by the Dallas School of Music and one of our Make Your Mark Day members who is learning to play bass guitar. We typically have 20 to 30 participants from all walks of life each month. Everyone is welcome: the young and the young-at-heart. You can meet new people, learn new skills and make a handson difference in the lives of everyone affected by multiple sclerosis. By volunteering with the Society, I’ve learned not only the textbook definition of the disease, but I’ve also learned first-hand how MS affects real people’s daily lives. For more information and to verify times, dates and locations for Make Your Mark Day, call the National MS Society at 1-800-344-4867 (press 2).
Amber Kocian is a yoga, Pilates and water aerobics instructor in the Dallas area, and an active volunteer with the National MS Society in North Texas.
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Stay Connected
with Monthly Teleconference Series by Angela Wentink
Learn about topics that affect your life from the comfort of your own home with the National MS Society’s monthly teleconference series. Each teleconference begins at 7 p.m. Central on the second Wednesday of each month. To register for each teleconference, call 1-800-344-4867 (press 1). Health Care Reform: Key Issues for People with MS Oct. 13, 2010 Learn how new reform legislation could affect you and your health care coverage. Find out when major changes will take effect as the law is phased in over time. MS Advocacy Nov. 10, 2010 Hear about the Society’s legislative agenda and how you can get involved.
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Pillow Talk: MS and Intimacy Dec. 8, 2010 Discuss common sexual issues often associated with MS. Learn what individuals and couples can do to enhance intimacy. Assistive Technology A-Z Jan. 12, 2011 Benefit from an overview of available assistive technology in the marketplace to help you be more independent at home and more successful in the workplace. Financial Planning Feb. 9, 2011 Financial professionals will discuss the importance of developing an investment plan, including a highlight of investment options and vehicles. Bullets for Employment March 9, 2011 Arm yourself with knowledge of work incentive programs, strategies for returning to work and ways to hold onto health benefits.
Managing Transitions June 8, 2011 MS can throw daily challenges your way in the form of new symptoms, employment issues, altering family dynamics and more. Learn to adjust, cope and adapt to change; discuss emotional responses like grief and loss; and discover resources to help you through these transitions. Research and What It Means for You July 13, 2011 Learn about new MS research and what it could mean for you. Caregiver Burnout Aug. 10, 2011 Caring for someone with a chronic illness can be deeply satisfying, but also physically and emotionally exhausting. This discussion will focus on preventing caregiver burnout. Participants will explore caregiving truths and misconceptions, plus the importance of coping skills and support systems.
Mood, Cognition and Memory April 13, 2011 Get tips on coping with mood, cognition and memory symptoms. Learn about treatment options that could help you.
Website 101 Sept. 14, 2011 This hands-on seminar guides you through the National MS Society website. Learn to easily navigate this powerful tool to stay on top of the latest MS news, research, programs and events.
MS 101 May 11, 2011 Get a comprehensive MS overview for people who are newly diagnosed.
Angela Wentink is Marketing Manager with the Society’s San Antonio office. She can be reached at angela.wentink@ nmss.org. Moving Toward A World Free of MS
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Yoga Provides Calm Moments of Well-Being in Busy World by James Black Editor’s note: This is the first in a quarterly MSConnection series profiling wellness and exercise classes offered by the National MS Society: Lone Star. Always talk to your doctor before starting a new exercise program.
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here is a weekly oasis of relaxation and calm in the nation’s fourth largest city. A few blocks from the hard-knocks playing field of the Houston Texans, a decidedly noncompetitive environment is in place at the National Multiple Sclerosis Society’s Southeast Texas office. The busyness of business in the Bayou City seems worlds away as men and women living with MS focus on wellness of
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their minds, bodies and spirits every Thursday evening. With words of encouragement and gentle humor, yoga instructor Maria Theresia Mazzarella leads a dozen students living with MS through a series of stretching movements. Many students stand during the exercises; others sit. They are men and women of all abilities in motion against a disease that often
takes such motion away. Near the beginning of each session, everyone in Mazzarella’s yoga class recites a positive weekly mantra in unison: “I love my body. I am grateful for my radiantly healthy and beautiful body.” “Our bodies are our temples or vehicles, yet most people take better care of their cars than their bodies,” Mazzarella said. “Yoga empowers us to love our bodies. We are calling on the internal intelligence of our bodies to cooperate, especially when we have imbalances or conditions like MS.” For a person living with MS, the road to wellness involves more than treatment of the disease. Wellness is a dynamic state of physical, emotional, spiritual and social well-being that can be achieved even in the presence of a chronic illness or disability. Along with being essential to general health, exercise classes such as yoga are helpful in managing many MS symptoms. A 1996 study published by University of Utah researchers was the first to demonstrate clearly the benefits of exercise for people with MS. Those who participated in an aerobic exercise program had better cardiovascular fitness, improved strength, better bladder and bowel function, less fatigue and depression, a more positive attitude, and increased participation in social activities. Since 1996,
several additional studies have confirmed the benefits of exercise. With its focus on combining breathing with movements that can alternately stimulate or calm the body, yoga tends to be highly recommended for persons living with multiple sclerosis. Many people with muscle tightness or decreased range of motion find yoga brings considerable and welcome improvement. The rhythmic abdominal breathing done in yoga is also important for persons with MS who may not be able to breathe deeply through vigorous exercise. Deep breathing aids circulation and helps maintain respiratory health. “My teacher used to say, ‘As long as you’re breathing, you can do yoga,’” said Mazzarella, who herself has been teaching yoga for 34 years. “When we have our attention on breathing and smiling, our mind will not take us to negative thoughts, aches or pains.” There are plenty of smiles and occasional laughter in Mazzarella’s weekly yoga sessions in the Society’s Houston office. Her students support one another in their shared passion for wellness in the face of MS. An exercise program must be appropriate to the capabilities of the individual and may need to be adjusted as changes occur in MS symptoms. Yoga can be adapted for people with MS, Moving Toward A World Free of MS
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sometimes by using cushions, folded towels or chairs. In Mazzarella’s Thursday night class, some members with MS actively and readily participate in the yoga movements while seated. “Students tell me they feel better physically, mentally and emotionally. They sleep better, their blood pressure issues improve, and their headaches and migraines get better or disappear in time. They say they feel lighter, they can move better and their balance improves,” Mazzarella said. Those tangible benefits and the refreshing camaraderie keep Mazzarella’s students coming back week after week. They roll out their purple yoga mats and, in the process, continue to roll away the stress and frantic pace of the surrounding city. “The great yoga master Vivekananda said, ‘Until you master your inner universe, you will struggle and not be master of the outer,’” Mazzarella said. “Becoming content from the inside out leads to a joyous life in the present. Yoga provides my students with tools to deal with life’s challenges.”
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Mazzarella’s weekly session is one of more than 15 regularlyscheduled yoga classes offered by the National MS Society: Lone Star in Austin, Brownsville, Corpus Christi, Houston, Pearland, Plano, Round Rock, San Antonio, Southlake, Stephenville and The Woodlands. To find a yoga class near you – and to find other wellness classes provided by the National MS Society, including aquatics, art therapy, physical training, Pilates, Pi-Yo, Tai Chi and therapeutic horseback riding – visit JointheMovementLoneStar.org and click the Programs and Services link in the left-hand navigation bar. You can also call the Society at 1-800-344-4867 for class information. Programs are free unless otherwise noted.
James Black is the editor of MSConnection and Strategic Communications Specialist in the Society’s Houston office. He can be reached via e-mail at james.black@nmss.org or by calling 713-394-2964.
Possible Biological Basis Found for Forms of Depression in Persons with MS A team funded by the National MS Society found evidence that depression is linked to brain volume loss in specific subregions of an area of the brain called the hippocampus, which is known to be important in memory. Tissue loss in this area was linked as well with abnormal secretion patterns of the stressrelated hormone cortisol. The results warrant further study to determine any cause-effect relationship, but are an important clue to a symptom that can interfere greatly with the quality of life of people with MS. The results also hint that this shrinkage may be reversible with effective treatment of depression in multiple sclerosis. Stefan M. Gold, Ph.D., and Nancy Sicotte, M.D., with the University of California in Los Angeles and their colleagues reported their findings this summer in Biological Psychiatry. Depression is common during the course of multiple sclerosis. Studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or in persons with other chronic, disabling conditions. In previous studies of people with MS, Sicotte and colleagues found evidence of tissue loss, or atrophy, in the hippocampus, a region deep in the brain known to be important in memory processes. Her team continues to study this area of the brain using highresolution magnetic resonance imaging (MRI). In this study, they looked for a correlation between brain atrophy in the hippocampus and MS-related depression.
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The team used high-resolution MRI to examine the four subregions of the hippocampus in 29 people with relapsingremitting MS and in 20 controls without MS. Levels of cortisol, a hormone released in response to stress, were obtained three times daily over two consecutive days. Participants also completed the Beck Depression Inventory, a questionnaire used to assess depression. The results show that, overall, people with MS had smaller tissue volume in the hippocampus than people without MS, particularly in two subregions, but their cortisol levels were not significantly higher. People with MS who were considered to have depression based on their Beck Depression Inventory scores had smaller tissue volumes in a third subregion as well. They also had higher levels of nighttime cortisol than people with MS who were not depressed and also compared to people with MS whose depression was considered to be well controlled with antidepressants. This study presents an important clue to the source of some of the depression experienced by persons living with MS. Further studies are necessary to determine any cause-effect relationship between cortisol levels and brain tissue volume loss, which are commonly found in people with severe depression who do not have MS. If the UCLA team’s findings are confirmed, it may lead to future therapies that target this cause of depression in people with MS. Several potentially neuroprotective therapies are being tested which could also be effective in preventing depression in MS.
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Meetings in San Antonio Focus on Research Progress and Clinical Care
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asic and clinical research issues were the focus of the 15th annual meeting of the Americas Committee for Treatment and Research in MS (ACTRIMS) in San Antonio this summer. Held in conjunction with the annual meeting of the Consortium of MS Centers (CMSC) and the National MS Society’s Tykeson Fellowship Conference, ACTRIMS was chaired by Jerry S. Wolinsky, M.D., with The University of Texas Health Sciences Center at Houston and jointly sponsored by the National MS Society and the University of Maryland School of Medicine, in collaboration with the MS Society of Canada. Seven invited lectures, along with 68 platform and poster presentations, were made at the ACTRIMS meeting; 20 cited funding
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from the National MS Society’s research programs. Following are highlights of select lectures and presentations at ACTRIMS, with a summary of the CMSC conference: Managing Treatment Risks ACTRIMS featured sessions on managing the apparent increase in treatment risk in more potent available and experimental MS treatments, such as the risk of developing PML, a brain infection that has occurred in people taking the MS drug natalizumab. Russell Katz, M.D., of the U.S. Food and Drug Administration reviewed how his agency monitors risk during the process of drug
development. Early on, toxicity in preclinical studies is evaluated to determine whether an agent is relevant for human subjects and might preclude the possibility of human trials. When clinical trials are completed and the sponsor files for approval, the agency analyzes the trials’ information to evaluate effectiveness and to determine if the sponsor adequately defined and considered all aspects of the risks. Finally, post-marketing studies are often mandated to determine longer-term risks and how known risks can be managed. Strategies that may help physicians and patients weigh risks and benefits of treatments were the subject of several presentations. In a National MS Society-supported study of information materials related to natalizumab and risks of PML, Sascha Köpke, Ph.D., and colleagues at the University of Hamburg and other institutions across Germany found that, after reading the materials, patients were generally more tolerant of safety risks than neurologists. The investigators pointed out the need for unbiased information to facilitate informed, shared decision-making between patients and their treating physicians. Treating Mental Health Problems David Rintell, Ed.D., with Brigham and Women’s Hospital in Boston and colleagues reported on a massive effort to understand mental health problems in persons living with MS, funded by a Health Care Delivery and Policy contract from the National MS Society. Rintell’s team surveyed 3,300 people with MS and then queried 1,118 people who reported
receiving mental health treatment about their experiences. Of these, 60 percent reported having mental health problems and 14 percent reported serious mental illness. Of those with serious mental illness, 44 percent received no mental health treatment. Of the 56 percent who did receive treatment, only half received it from mental health professionals; the others received mental health treatment from their primary care physicians, neurologists or nurses. The results show the need to improve strategies for identifying and treating mental health problems in people with MS. Oral Teriflunomide Results Mark Freedman, M.D., with the University of Ottawa and colleagues reported on phase II results of a study in which two different doses of an oral immune-modulating agent called teriflunomide, or placebo, were added to ongoing interferon beta-1a therapy in 116 people with relapsing-remitting MS for one year. Disease activity as observed on MRI scans was reduced by 86 percent over placebo in the lower dose group and by 82.8 percent over placebo in the higher dose group. The most frequently-reported adverse events were upper respiratory tract infections, headaches and gastrointestinal disorders. Liver enzyme elevation occurred, not exceeding three times the upper limit of normal. Larger-scale, phase III studies of teriflunomide are underway in relapsing MS and in people at high risk for MS.
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Report from CMSC Annual Meeting The Consortium of MS Centers focuses on the clinical care of people with MS. A session in June featured both ACTRIMS and CMSC papers, facilitating networking among basic and clinical researchers, neurologists, and allied health professionals who attended these meetings. Following is a sample of the CMSC meeting’s reports on research to improve the care of people with MS: Fatigue Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people living with multiple sclerosis. Marcia Finlayson, MSc, OTR, Ph.D., with the University of Illinois at Chicago and colleagues studied the effectiveness of a teleconferencedelivered fatigue self-management program in 190 people with MS. The program comprised six weeks of 70-minute, weekly sessions delivered by a licensed occupational therapist. Scores on a scale measuring fatigue and physical function improved significantly with the program. Improvements were maintained at six-month follow-up; mental health showed significant improvement at six-week followup. Telephone-based interventions can be an important addition to the fatigue treatment spectrum for people with MS who have mobility issues. This presentation won the meeting’s Patient and Family Education Award for Best Platform Presentation.
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Bladder Dysfunction Bladder dysfunction occurs in the majority of people with MS. Maria Lopes de Carvalho, M.D., Ph.D., and colleagues from the AISM Rehabilitation Centre with the Italian Multiple Sclerosis Society in Genova designed individualized, 12-session urinary rehabilitation programs for 62 people with MS. Urinary incontinence decreased significantly, as did urinary retention. Further study may show such efforts to be another addition to treatment options for people with bladder dysfunction in MS. This presentation received the Research Award for Best Platform presentation at CMSC. Community Participation Karon Cook, Ph.D., with the University of Washington and colleagues administered a questionnaire to 1,271 people with MS, asking them to rate how 15 items affected their community participation: heat sensitivity, numbness, bowel or bladder problems, imbalance, problems thinking, sexual dysfunction, slurred speech, spasticity, swallowing problems, tremor, vision loss, arm weakness, leg weakness, fatigue, and pain. The strongest impediments were deemed to be weakness in the legs and fatigue. Further research is needed to test whether interventions for these symptoms improve community participation. For additional information and to view the complete 2010 ACTRIMS program, visit actrims.org.
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Research and Clinical Trainees Connect at Tykeson Fellows Conference In San Antonio this summer, the 2nd Tykeson Fellows Conference on MS brought 57 National MS Society research and clinical fellows together to learn about each other’s latest research efforts. The conference was convened by the Society and launched by a generous contribution from Donald Tykeson, active volunteer and Honorary Life Director of the Society’s National Board of Directors, and supported by donations from Genentech, Genzyme Corp., Sanofi-aventis, Bayer HealthCare and Teva Neuroscience. “We’ve made great progress in slowing down the disease, but finding the cause and the cure has so far eluded us,” said Tykeson in his welcoming remarks. “This meeting is an opportunity for global networking and enjoying a sense of community among MS researchers. I hope and expect that this collaboration will lead to new research ideas.” Thomas G. Forsthuber, M.D., Ph.D., with the University of Texas at San Antonio spoke at a special dinner for fellows and other attendees. A long-time Society volunteer, Forsthuber began his MS research career as a Society Harry Weaver Neuroscience Scholar.
He emphasized the importance of remaining committed to MS research and of staying connected with the Society. One strategy for keeping the best and brightest engaged in MS research is to enhance young investigators’ career trajectories and competitiveness. Grantees are constantly faced with the need to present their ideas to earn funding or develop collaborations, so the conference featured a session on building effective communications skills. “This Tykeson meeting is terrific,” said Tiffany Braley, M.D., a fellow at the University of Michigan working with Benjamin Segal, M.D. “It brings everyone in MS together. The MS field is becoming more and more collaborative.” Attendees spoke highly of the experience of being a Society fellow. “Young investigator funding is so hard to get,” said Wensheng Lin, M.D., Ph.D., who is completing a fellowship at the University of South Alabama and is investigating the possible protective role of an immune messenger protein in MS. “I’m so grateful to be able to continue this work.” Moving Toward A World Free of MS
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Oral Drug Study at UTSW in Dallas Recruiting Women 18-50 with MS
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he National MS Society is funding a two-year, controlled clinical trial of an estrogen (estriol) added to standard therapy to treat MS. If successful, this clinical trial could lay the groundwork for a larger, definitive trial that could lead to a new treatment option in pill form for women with MS. Study criteria have recently changed, such that patients previously treated with an interferon or Copaxone are no longer excluded. The estriol trial is taking place at 16 medical centers across the United States, including The University of Texas Southwestern Medical Center at Dallas. Investigators will administer estriol in pill form to women between the ages of 18-50 who have a diagnosis of relapsing-remitting MS. The oral treatment will be given in combination with subcutaneously injected Copaxone, a standard treatment for MS, for two years. The team is evaluating effects of the treatment combination on relapse rates and several clinical and magnetic resonance imaging measures of disability progression. Estriol levels rise to high levels naturally during late pregnancy, a time when most 36
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women’s MS disease activity declines. This led some to suspect that estriol may be responsible for this easing of symptoms during pregnancy. Dr. Rhonda Voskuhl with the University of California in Los Angeles and others explored this lead in mice with MS-like disease. Later, with Society support, Voskuhl conducted a small, early-phase trial of estriol in 12 women with MS. Results in mice showed that estriol treatment was indeed protective. Results in the pilot trial showed that estriol treatment decreased disease activity in women with relapsing-remitting MS. This study, costing more than $5 million, is being funded by the Society and the National Institute of Neurological Disorders and Stroke. Adeona Pharmaceuticals is providing drug for the trial. Women between the ages of 18 and 50 who are diagnosed with relapsing-remitting MS and are interested in participating in this clinical trial should contact the study’s coordinator in Texas, Gina Remington with The University of Texas Southwestern Medical Center at Dallas, by calling 214-645-0560.
Year-End Giving Helps Others in Need All Year Long by Kristen Stubbs
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t’s hard to believe that another year has come and gone – it seems that every year December comes sooner than the one before it. Each year, I take this opportunity to highlight some of the programs and services the Society has provided to people living with MS, as well as a few of the advances in MS research. This article also is an opportunity to remind us all of the vast amounts of money that it takes to fund these programs and this extremely vital research. With the economy slowly making its way back, the Society had the opportunity to move others through our vast array of programs and services. Thousands of people took part in our wellness classes across the region and nearly 40 Self-Help Groups provided support and fellowship. We were able to fund and renew more scholarships to students whose lives have been impacted by MS. Nearly 500 volunteers in leadership roles shared their talents to move our mission forward. 2010 was also a big year in research efforts. The first oral medication for specific symptom management became available and the FDA has fast-tracked the review of several diseasemodifying oral medications. This breakthrough alone will transform countless lives, as many
people living with MS will be able to take a pill instead of using a needle when taking their MS medications. Because of gifts from many generous donors and event participants, we were able to give $6.8 million to research in 2010 – research that will be instrumental in three areas of focus: stopping MS progression, restoring myelin loss and ending MS altogether. With your year-end gift, the National MS Society can continue to provide programs and services to thousands of people living with MS and we will be able to continue to fund the research that is so vitally important. Please consider making your tax-deductible year-end gift today.
Kristen Stubbs is Vice President of Strategic Philanthropy. For more information on ways to give or to inform the Society of provisions that you have made in your will regarding a gift, contact Kristen at 713-394-2991 or by e-mail at kristen.stubbs@nmss.org.
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Why I Ride the Bike MS: Valero by Fred Gibbons Bike MS participant Fred Gibbons goes the extra mile each year. As a top fundraiser and captain of Team Broadway, he and his cycling crew are geared up for the 2010 Bike MS: Valero ride, which rolls out Oct. 9-10 from San Antonio to New Braunfels and back. For details, visit bikeMStexas.org.
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have been a team captain for several years, both for the Bike MS: Valero and BP MS 150 rides. There are a number of reasons I ride. Personally, I know that I am making a difference in the lives of others. By being a team captain, I know that I am helping to multiply that several times over, as well as building awareness for the National MS Society. Although being a team captain is hard work, I know that the payoff in the end can be huge for not only those with MS, but those 38
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who participate in the ride. There is nothing like seeing the smiles of your teammates as they cross the finish line; that comes from them knowing they have accomplished something personally, as well as helping a lot of deserving people. The part that has always amazed me is when my riders come up and thank me for putting the team together. It seems as though I should be thanking them, which is what makes the experience all the more amazing.
Why I’m Stepping Up for the Fall Walk MS by Jennifer McDaniel
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ince diagnosis in 2007, I’m constantly learning about MS and its effects on my body and life. I often joke that my mind and body have two separate agendas. It continues to be a heart vs. brain vs. body battle, and one I’ve had to learn not to fight. Pulling back and slowing down is not in my nature, so I constantly have to remind myself I’m not going to bully my body to comply. I have to comply with my physical demands so I can enjoy my passions on a new, but still wonderful, level. I’ve changed how I channel my passions. I no longer put pressure on myself to step up and take on roles that could have been easily handled in the past; I now thoroughly consider all aspects of those responsibilities. How demanding will it be? Can I pace myself? I choose administrative or support roles that I can do from home or on my computer. Being in sales, I naturally enjoy interacting with others and thinking creatively, so I now chose roles that utilize that trait. It’s second nature for me, so doing what I love isn’t stressful; it’s joyful when done with limits. Why do I walk in the 2010 Walk MS: Sugar Land? I’ve learned the only way to handle MS is with faith and humor.
I want others to join me in the walk because I know, if they’re MS patients, it can bring satisfaction like nothing else. To become a warrior against something you don’t have much control over is powerful, and every step taken or dollar raised strengthens you. Keep doing it and you find it’s no longer about yourself, but the MS community as a whole and you’ve become part of something bigger. That’s the point. None of us are in this alone. Being involved in this event means the world to me, and my family understands and supports it. My husband is my rock and embraces the importance of the walk. My team will be him, my 17-year-old son, my daughter and son-in-law from Austin, my mom and dad, my sister, and my aunt. I’ve also recruited church family to participate, my wonderful hairdresser and a family I grew up with going to church. They’ve been through so much with me that this is part victory lap and part battle lap, so every step matters.
Jennifer McDaniel co-chairs the 2010 Walk MS: Sugar Land committee. Learn more about all the fall Walk MS events at walkMStexas.org.
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Houston Resident Has a Ball in Paralympic Competition by James Black
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ames Sweatt is on a mission that’s equal parts inspiration, dedication and perspiration. This summer, the 44-year-old Houstonian competed in the 2010 U.S. Boccia Nationals in Chicago. An estimated 500 athletes from across the United States competed in these Paralympic Games. When he returned to Texas, Sweatt did so proudly wearing his secondplace medal. “Never say you can’t do anything,” Sweatt said with a grin, displaying his national medal. “You might not be able to do all you used to do, but try to do something. You might surprise yourself.” It’s been a long journey for Sweatt, well before the July road trip from Houston to Chicago. After originally feeling a pins-andneedles sensation in his feet and numbness in his hands, Sweatt visited his doctor and was diagnosed with both MS and diabetes in 1995. Six years later, the progression of his MS symptoms led Sweatt to begin using a wheelchair.
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“I was down, so down, when I got MS, but you have to learn to hold your head up,” he said. “I had to look at it as ‘I’m a person with MS, but I still have to go on with my life.’” Physical therapy was one way to keep moving forward. During one session last year, a seed of inspiration was planted for his latest competition. “My therapist first told me about boccia and said, ‘James, you need to get into it,’” Sweatt said. “It was something new for me, so I had to really train to get ready.” Boccia has been part of the Paralympic Games since 1984. It was originally presented as a sport for athletes with cerebral palsy, but is now open to all athletes with severe physical disabilities, including multiple sclerosis, stroke, traumatic brain injury, spinal cord injuries, muscular dystrophy and ALS. Boccia tests an athlete’s coordination, accuracy and ability to strategize. The sport is played indoors on a flat, smooth surface by individuals, pairs or teams
of three. Athletes throw, kick or use an assistive device to propel small leather balls as close as possible to a white target ball, also known as the jack. In an individual match, each player throws six balls; each match has four ends. While the object for each player is to get his or her ball closest to the jack, strategy also plays a hand in determining the winner. A strategic player can throw a ball to block his opponent or to knock his opponent’s ball away from the playing field. “I was nervous, because this was my first time competing at this,” Sweatt said. “But competing isn’t a big thing when you’ve got people supporting you. I had plenty of people behind me, even other players. We were like a family.” Sweatt’s athletic experience in Chicago also provided opportunities to raise awareness of multiple sclerosis. “At the boccia competition, a lady asked me, ‘What’s your disability?’ I told her that I have MS and she said, ‘Oh, my uncle has MS.’
By competing, I showed her what her uncle can do, because if I can do it, so can he,” Sweatt said. “She said, ‘You inspired me, James.’” Now that he has his boccia award, Sweatt is on a roll for more athletic competitions. He’s active in a Houston soccer league for persons with disabilities and is already looking ahead to the boccia championships in London in 2012. “I’ve come a long way with this disease. I’ve been through a lot with it. But now, I can move. I can compete,” said Sweatt, his left hand cupping the boccia medal to his chest. “It takes time. I’ve learned patience. But above all, I’ve learned to never count myself out.”
James Black is the editor of MSConnection and Strategic Communications Specialist in the Society’s Houston office. He can be reached via e-mail at james.black@nmss.org or by calling 713-394-2964.
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Community Events Cook Up New Ways to Serve Families by Jenny Heidrick
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the Society, and have grown this annual event to he Smith family – father Tom, mother Judy what it is today. and daughter Leigh Ann – of Van Alstyne, Volunteers such as the Smith family, Texas held a Lone Star barbecue dinner this communities and businesses are sharing their summer as a community event for the National time and talents to raise money and awareness MS Society. This year’s event marked the fifth to benefit everyone living successful year for this tasty with multiple sclerosis. fundraiser, with more than Money raised from Money raised from 175 attendees and more than $40,000 raised to help community – or third- community – or third-party – events supports ongoing families living with multiple party – events supports research initiatives into the sclerosis. ongoing research cause, treatment and cure The barbecue dinner was held at the local high school, initiatives into the cause, of MS, as well as important programs and services, such as with plenty of homemade treatment and cure of financial assistance, wellness cakes for dessert and numerous items donated for MS, as well as important classes, career counseling, scholarships and more. a silent auction. There was programs and services... Community events are no charge for the dinner; volunteer-led and -supported. attendees were asked to They can include anything donate as they were able to from bowling tournaments and golf tourneys to benefit the Society’s mission. bake sales and garage sales. Entertainment for the event included local musicians. A presentation about multiple sclerosis and the National MS Society was also Jenny Heidrick is Strategic Philanthropy given. Coordinator in the Society’s Houston office. Leigh Ann is a senior at the University of She has a handy guide with information North Texas and Judy is a registered nurse with on how to stage third-party events in your the Anna Independent School District. Both community. Contact Jenny for details at jenny. have MS. The family wanted to get involved in heidrick@nmss.org or 1-877-440-3413. supporting MS research and programs through 42
MSConnection • FALL 2010
CLOSING THOUGHTS
As 2010 Draws to a Close, We Keep Moving to Help Others in 2011 Mark Neagli
Regional Executive Vice President • National MS Society
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s we wrap up another busy and productive year at the National MS Society, it’s time to reflect on how each of us has made an impact on the world around us, as well as how much we must continue to do in the new year. Everyone at the Society works to ensure that the spirit of goodwill and helping others thrives year-round. We do it by making sure the gifts we receive – through donations, fundraisers and other contributions – are wisely and efficiently used on behalf of the people we serve. Persons with MS – as well as their families, friends and health care professionals – trust and count on us as good stewards everyday, not just once a season. MS stops people from moving, but we cannot stop in our movement to provide direct services and to fund research. We must work non-stop to raise funds to move us closer to an MS cure. The economic environment of the past two years has made that mission more challenging, but it is a challenge we must – and will – face with dedication and determination. We generate much-needed funds through our annual fundraisers, such as the popular Bike MS and Walk MS events; through Strategic Philanthropy, including grants, individual gifts, major giving and workplace giving; from third-party and leadership events,
such as our Dinners of Champions and On the Move Luncheons; and from funds from our Society headquarters through its direct marketing efforts, campaigns and general donations. Every dollar makes a difference and every contribution helps someone who must face the challenges of MS each day. You can help through one-time or recurring monthly donations; tributes and memorial gifts in honor of a loved one; pledges to a Bike MS or Walk MS event participant; workplace giving; and planned-giving gifts through bequests, charitable gift annuities, trusts or other estate plans. With your contributions, you’re a partner in our journey toward a world free of MS. We couldn’t do what we do without you. For information on how you can help, I urge you to call us at 1-800-344-4867. Thank you for your continued involvement in the MS movement. I wish you and your loved ones a wonderful and joyful holiday season.
For more information on these events and to get involved as a participant, volunteer or supporter, contact the National MS Society at 1-800-344-4867 (press 2).
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8111 North Stadium Drive, Suite 100 Houston, Texas 77054
IT’S OK IN 2011
National MS Society: South Central Region
CONFERENCE AND ANNUAL MEETING Tulsa, Oklahoma • February 2011
Visit JOINTHEMOVEMENTLoNESTAR.org FOR details OR CALL 1-800-344-4867