National Multiple Sclerosis Society Rio Grande Chapter 4125 Carlisle Blvd NE Ste A Albuquerque, NM 87107-4806
MOVING TOWARD A WORLD FREE OF MS | VOLUME 1 • EDITION 2
MS advocacy is unstoppable in 2011 We Are Unstoppable - This phrase was created to symbolize the advancements that have been made towards finding a cure for MS, and to represent the foundation of the National MS Society. Earlier this year, 50 MS Activists lived up to the phrase by attending the 2011 MS Day at the Capital in Santa Fe. These 50 MS Activists created a sea of orange at the Capital while educating and advocating for individuals affected by MS. The MS activists were able to participate in a press conference in the Rotunda that included an MS Day Proclamation by the Mayor of Santa and talks by state legislatures, neurologists, individuals affected by MS, and veterans living with MS. The day was also an opportunity MS activists to meet with state legislators and to talk about the importance of advancing policies that directly impact people living with MS and their families. Rio Grande Government Relations Committee Chair Jeanne Hamrick (left) and Committee member Krista Hein (center) talk with New Mexico Governor Susana Martinez during the 2011 MS Day at the Capitol.
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Through the dedication and hard work of the MS activists and volunteers, MS Day at the Capital had a large impact on the individuals involved. Jennifer Gomez-Chavez, Rio Grande Government Relations Committee (GRC) Co-Chair, said, “MS Day at the Capital was a success. There were several bills at the legislature this year, and through our advocacy we hope to bring a strong voice for individuals living with and affected by MS.” The National MS Society was a supporting organization for the New Mexico Prescription Donation Process (Senate Bill 37), sponsored by Senator Dede Feldman. This legislation passed both the Senate and House unanimously, and New Mexico Governor Susana Martinez signed the bill into law in April. More information about how this legislation will impact those living with MS in New Mexico will be available in June. The GRC will begin planning the 2012 MS Day at the Capitol later this fall. For more information, contact Vicki Kowal, Coordinator, Programs & Services, at firstname.lastname@example.org, or 1-505-243-2792, ext. 23.
INSIDE THIS ISSUE
Walk MS Success PAGE 3
Connect with an MSFriend PAGE 5
Research Next Steps PAGE 6
National MS Society 4125 Carlisle Blvd. NE Suite A Albuquerque, NM 87107 tel +1 800 344 4867 tel +1 505 243 2792 fax +1 505 244 0629 www.MSNewMexico.org Staff & Leadership Mark Neagli, Regional Executive Vice President Vicki Kowal, Coordinator, Programs & Services Suzanne Lawson, Regional Manager, Marketing & Communications, MSConnection Editor Maggie Schold, Manager, Special Events David Peters, Chair, Leadership Council
Contributing Writers James Black Bernadette Gallegos 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.
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South Central celebrates unstoppable achievements at 2011 annual meeting Residents across five states got connected in a new way in the new year. The National MS Society’s 2011 South Central Conference and Annual Meeting was the first to be broadcast live over the Internet. Webcast from host city Tulsa, Okla., the Jan. 29 event marked the latest advance in keeping everyone affected by multiple sclerosis plugged in to the Society’s achievements and happenings. The 2011 Annual Meeting also marked the first united forum of its kind for the Society’s South Central states of Texas, Oklahoma, Louisiana, Arkansas and New Mexico. The states have united to tackle MS head-on and to better help everyone affected by this unpredictable disease. South Central’s five-state partnership serves more than 80,000 people in 438 counties in Texas, Oklahoma, Arkansas and New Mexico, and in 64 parishes in Louisiana. That is the equivalent of one-fifth of the estimated 400,000 men, women and children living with MS in the United States. In addition to the meeting’s business portion, during which the South Central slate of officers and board members was approved, the January event was an opportunity to celebrate and reflect on the organization’s local achievements in 2010. Together and across five states, South Central’s 2011 Annual Meeting showcased the positive, powerful change taking place in the Society’s virtually unstoppable vision toward a world free of multiple sclerosis.
And, some previous trials used a mixed New drugs emerging population of people with primary The researchers also talked about repairing progressive MS and secondary progressive the nervous system by stimulating the body’s MS. Since it’s not clear that all types of own repair cells to be more active or by trying progressive MS would respond the same way, several types of stem cells to repair myelin. mixing participants may be one reason that Part of the conversation included how newer some past trials were not approved treatments may help successful. Part of the in the battle to protect the conversation included For a complete wrap-up of nervous system in people with the meeting and a webcast how newer approved MS. featuring a panel of several treatments may help “For the first time we’re really participants, visit www. in the battle to protect starting to see the emergence nationalMSsociety.org/ the nervous system in of very, very effective drugs thinktank. for treating inflammation,” Dr. people with MS. Repairing the nervous Giovannoni said, noting that system these therapies might also help to stave off nervous system damage and allow In January Dr. Coetzee, chief research officer natural repair processes to work, although of the National MS Society, was joined by this has not yet been proven. “We’ve seen Drs. Peter Calabresi, Ian D. Duncan, Charles people who have highly active disease going ffrench-Constant and Gavin Giovannoni for on these drugs and improving,” he said. the webcast, “Repairing the Nervous System in MS: Progress and Next Steps.” The four For a full report or to read a transcript of the researchers recently served as leaders of webcast, visit www.nationalMSsociety.org/ four international teams in the National webcasts. MS Society’s Nervous System Repair and Protection Initiative, funded through the Promise: 2010 campaign. The investigators discussed research on the ways that nerve fibers, or axons, and their protective myelin coatings are damaged. Certain drugs the experts have studied seem to prevent nerve cells from dying in an animal model. Since some of these drugs are commercially available right now for other diseases, they are good candidates for future clinical trials.
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SELF-HELP GROUP MEETINGS
The National MS Society offers a variety of Self-Help Groups throughout New Mexico and the El Paso, Texas area. For a complete list, visit www.MSNewMexico.org. Clovis/Contact: Tammy 1-575-762-1445 6 p.m. third Thursday of each month Plains Regional Medical Center, Caduceus Room, 2100 N. Martin Luther King, Clovis Taos/Contact: Tony or Donna 1-575-751-3249 6 p.m. last Tuesday of each month Taos Living Center, 1340 Maestas Road, Taos Albuquerque Westside/Contact: Tina 1-505-896-6728 11 a.m. third Thursday of each month Rio Rancho Church of Christ, 1006 22nd Street SE, Rio Rancho Silver City/Contact: Marcia 1-575-534-0609 11:30 a.m. first Tuesday of each month Un Mundo Restaurant, 700 N. Bullard Street, Silver City 4
Community Events encourage you to start a movement in your community From carwashes and golf tournaments, from bake sales to “band blowouts,” people living with MS and the people who care about them put an impressive amount of time, money and imagination into fundraising to create a world free of MS. Across New Mexico and the El Paso, Tex. area, volunteers, communities and businesses bring together their time and talents to raise both money and awareness in support of the National MS Society. “These efforts are making a difference in the lives of those living with and affected by multiple sclerosis,” said Suzanne Lawson, Regional Manager, Marketing & Communications. “Money raised from community, or third-party events, supports Society research initiatives, as well as provides for important programs and services directly supporting families in New Mexico and the El Paso area.” For more information about Community Events, visit the Fundraising Events section at www.MSNewMexico.org, or call 1-505-243-2792, 22.
Connect with an MSFriend No matter how wonderful friends and family can be, there are times when people want to talk to someone who understands exactly what they are going through—someone who is affected by MS, too. That’s where MSFriends come in. Volunteers affected by MS connect with callers to share how they live with MS and help with problem-solving or challenges people diagnosed with MS may face in relationships. They may also help with symptom management. People can call 1-866673-7436 to speak to an MSFriend, 5 a.m. to 2 a.m. daily. If an MSFriend is unavailable, please leave a message and calls are returned the following day. The program got its start in 2005 under the umbrella of the VisionWorks Foundation, but is now being administered directly by the National
MS Society. “This allows us to expand the ways people living with MS can connect,” said Kimberly Koch, MPA, associate vice president, Family and Support Programs for the Society. “It’s nationwide, so people can get involved even if their chapter doesn’t have a peer support program.” There are currently about 40 volunteers. Koch hopes to expand this to about 100. All have been diagnosed MS themselves, but in the future, other family members or care partners may be recruited. The main difference between the Society’s MS Navigator® program and MSFriends is that the Navigators’ primary job is to get people referred and connected to resources, while the Friends’ job is to listen and provide emotional support. If you’d like to be an MSFriend, call us about training. MSFriends averages 9,000 calls a year, and they are completely confidential. “MSFriends allows people to connect when they feel like it, unlike self-help groups, which meet at a specific time,” said Koch. “If your question comes up at an odd hour, there’s a place to reach out for support.”
Include your Community event on our calendars! To include your community event on the National MS Society’s calendar and Facebook pages, please email the event information (with flyer if available), to email@example.com. Please submit a minimum of 14 days prior to your event.
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Research next steps
• Researching what leads to disease progression,
Rio Grande Walk ms a success once again
• Finding ways to repair damage to the nervous system,
Better identification faster
• Accelerating the development of new therapies.
Finding ways to more quickly identify progressive MS based on biology rather than on symptoms would mean therapies could be tested earlier in the course of the disease and possibly protect the nervous system from injury.
Recently, MS researchers have been assessing their progress in a number of areas. A think tank on progressive MS brought together MS investigators, research funding agencies and industry representatives. And, in January, Dr. Timothy Coetzee, chief research officer of the Society, moderated a panel of MS researchers in a live webcast, “Repairing the Nervous System in MS: Progress and Next Steps.”
Some evidence indicates that nerve degeneration occurs independently of inflammatory events, but there is other evidence that degeneration stops when inflammation subsides. Therefore, more research is needed to understand the cause of underlying nerve damage in progressive MS and to identify new targets for therapies. Participants also discussed the need for biomarkers—“footprints” that could help identify or predict MS progression. Think tank participants reported that steady progress is being made in finding noninvasive ways of detecting nervous system damage and whether protection or repair are taking place.
How does MS progress?
At the think tank, which was hosted by the National MS Society and its commercial drug development entity Fast Forward last December in Boston, Society President and CEO Joyce Nelson pointed out that progressive MS is the centerpiece of the Society’s Strategic Response for the next five years, with a focus on:
The participants discussed other important issues, as well. Many clinical trials do not run long enough to make clear whether there is an effect against slow progression. The traditional measurement of disability progression, the EDSS scale, is not sensitive to subtle change, which poses a problem in monitoring progressive MS.
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Walk MS is a rallying point of the MS movement, and communities throughout the Rio Grande area came together to raise funds and celebrate hope for the future! There were more than 2,100 participants in Walk MS events in Albuquerque, Hobbs, Jal, Las Cruces, Roswell, Santa Fe, and El Paso, Tex., and together the Walk MS events raised more than $186,000 to help create a world free of MS. “It was so wonderful to see so many familiar faces and meet great new supporters at Walk MS this year,” said The High Heels Against MS team poses for their team photo at the 2011 Walk Maggie Schold, Manager, Special Events. MS at Cohen Stadium in El Paso, Tex. Schold said that total fundraising for Walk MS was two percent higher than 2010, and participation increased by 35 percent. Schold contributes much of this year’s success and growth to the event’s volunteers. “Special thanks to all of the committee members and volunteers who contributed their time and talents to making this the best Walk MS season ever!” she said. Expo MS was also launched at Walk MS in Albuquerque, the Rio Grande’s largest walk event. Expo MS included a variety of programs, including Laughter Yoga and Quiz the Neurologist, along with a health fair featuring providers that offer programs and resources for those affected by multiple sclerosis. Vicki Kowal, Coordinator, Programs & Services, said that moving forward, she hopes that Expo MS can be introduced at other Walk MS events across the Rio Grande area. For more information about Walk MS 2012, visit www.WalkMSNewMexico.org, or call 1-505-243-2792, ext. 24.
Special Thanks to Our Sponsors Garcia Automotive Group Teva Neuroscience, Inc. EMD Serono, Inc. Roswell Regional Hospital Biogen Idec Christus St .Vincent Sam’s Club Dex
Comcast Enterprise Rent-A-Car Hanger Prosthetics and Orthotics, Inc. Novartis El Paso Diablos DeVargas Center Accorda Theraputics General Mills
Barnett’s Las Cruces HarleyDavidson Greater El Paso Credit Union Starbucks Arby’s Walgreens Albuquerque Health Partners IHOP
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Spring 2011 edition of MSConnection: New Mexico