MS Connection Summer 2013

Page 1

GEORGIA CHAPTER

MOVING TOWARD A WORLD FREE OF MS | VOLUME 6 • EDITION 2

Bike MS

September 14-15, 2013

In this Issue: Partnering with Telehealth Page 2

Meet our new Manager for Southeast Advocacy Page 4

Research Updates Page 10


1-800-344-4867 Publication of the National Multiple Sclerosis Society Georgia Chapter • 1117 Perimeter Center West, Ste. E101 • Atlanta, GA 30338 Chairman • William J. Holley II Secretary • Cherise Mlott Treasurer • Keith Keller

Are you looking for a Self-Help Group or Peer Supporter in your community? Whether you just received a diagnosis of MS or have been living with it for a long time, the National MS Society, Georgia Chapter has great programs available to you where you can find support and experiencedbased tips on how to live a productive and happy life with MS.

Chapter President • Roy A. Rangel

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. The National Multiple Sclerosis Society‘s mission is to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. © 2013 National Multiple Sclerosis Society, Georgia Chapter

2

|

JOIN THE MOVEMENT: nationalMSsociety.org

Self-Help Groups meet regularly for educational and social purposes, allowing members to express feelings and provide support to one another. Members share a belief that positive personal change can happen through individual effort with the support of others. Peer Supporters are trained individuals living with MS, or are a family member of someone living with MS. Via the telephone, our Peer Supporters offer information, companionship, emotional support and encouragement to peers living with MS. There is no cost to participate in a Self-Help Group or Peer Support Program. To request services or if you are interested in starting a Self-Help Group or becoming a Peer Supporter, call the Georgia Chapter Office at 1-800-344-4867 or e-mail Stephanie at stephanie.shapiro@nmss.org See complete listing of Self-Help Groups in Georgia on Page 15.


GEORGIA PARTNERSHIP FOR TELEHEALTH

Telemedecine in Georgia – Meeting the needs of MS in rural Georgia Imagine trying to manage the symptoms of MS while living 4½ hours from the nearest neurologist. Maybe you don’t have to imagine; maybe this is your reality. For many individuals and families living with MS in Georgia getting to specialized MS care is a major challenge. As part of our continuing commitment to improving access to care for those living in rural areas and for others who are underserved we would like to make you aware of an access to care option available to you in Georgia through a collaborative effort between the MS Center of Atlanta (MSCA) and the Georgia Partnership for Telehealth (GPT). Together these two entities are providing the first comprehensive telehealth program for individuals and families living with multiple sclerosis in Georgia. Telemedicine can link MS specialty clinics with local providers, support patient education and support and monitor patient health status. Studies have reported that the cost of care for MS patients was reduced by more than a third when telemedicine was introduced. The MS Telehealth Collaborative utilizes advanced high-definition video technology and the medical expertise of the neurologists at the MSCA to provide quality, comprehensive MS care to you at one of their local presenting sites. To learn more about the MS Telehealth Collaborative please visit www.mscatl.org or call the MS Center of Atlanta at 404-351-0205. For more information about the programs and services offered by the National MS Society please call 1-800-FIGHT-MS / 1-800-344-4867 or visit www.MSgeorgia.org .

As a service and courtesy to you, the National Multiple Sclerosis Society, Georgia Chapter wants to inform you of this Telehealth Program. The National MS Society had no role in developing this program. To learn more about the Telehealth Collaborative please contact the MS Center of Atlanta.

TOLL FREE NUMBER 1 800 344 4867

| 3


ADVOCACY

Meet Clark Thomason Clark was born and raised in Athens, Georgia, and received her BS in Family and Consumer Sciences from the University of Mississippi in 2006. After graduation, Clark moved to Washington, D.C., to pursue a career in public policy. She began working in the office of Congressman Roger Wicker of Mississippi, where she learned the ropes and quickly took an interest in health care policy. When Congressman Wicker was appointed to the Senate in 2008, Clark was promoted to Legislative Correspondent and began working more closely on health care policy issues as well as other social programs, including social security and education. She worked on the Senator’s policy team through the debate and passage of health care reform legislation, the Affordable Care Act (ACA). After the passage of the ACA in 2009, Clark began looking to expand her portfolio and took a job with the Association of American Medical Colleges (AAMC) in 2010, where she served as a federal lobbyist advocating for issues affecting teaching hospitals and physicians, particularly

Medicare graduate medical education (GME) and National Institutes of Health (NIH) funding. Clark joins the National MS Society with both public sector and non-profit experience, and understands the importance advocacy and public policy has on individuals living with multiple sclerosis, as well as the challenges they face. Through her role as the new Manager for Southeast Advocacy, Clark will focus on expanding communication and collaboration between the Chapters throughout the region to ensure the voices of those living with MS are heard. For the first time in FY 2013, the Society embraced a unified state policy agenda. Across the country, MS activists will take the same issues to state legislatures and urge action. The State Activism Council selected three priorities for inclusion in the FY2013 Unified State Policy Agenda, including Medicaid expansion, prescription drug co-insurance and cost sharing, and increasing education and awareness of the unmet needs of people with MS.

To learn more about Government Affairs and Advocacy, visit www.MSGeorgia.org 4

|

JOIN THE MOVEMENT: nationalMSsociety.org


WHAT:

For cyclists and all those seeking a personal challenge and a world free of MS, Bike MS is the premier fundraising cycling series in the nation. The Bike MS: Cox Atlanta Ride is an extraordinary ride that provides cyclists with the ride of a lifetime! This two-day ride, benefiting the National Multiple Sclerosis Society, will host an anticipated 1,400 cyclists and 500 volunteers raising over $1 million to support national research for a cure and local client programs and services for Georgians living with MS. Visit www.bikeMS.org or call 1-800-344-4867 for more information.

WHEN:

Sept 14-15, 2013, 8:00 a.m. start each day

WHERE:

Cyclists start and finish both days of the ride at Callaway Gardens, The routes traverse the beautiful Georgia countryside with figure-eight lengths of approx.. 35-mile, 65-mile and 100-mile options on Day One and 30-mile and 65-mile options on Day Two.

GET INVOLVED:

Volunteer at the 2013 Bike MS Cox Atlanta Ride September 14-15 @ Callaway Gardens. Volunteers are the reason our programs and fundraisers succeed! Volunteering is your chance to join the movement to do something about MS now! You can volunteer for an hour, an evening, a day, or the whole weekend! For more information, or to register as a volunteer, visit www.bikeMS.org today! TOLL FREE NUMBER 1 800 344 4867

| 5


PROGRAMS

MS On the Move

The National MS Society, Georgia Chapter is excited to partner with Questcor Pharmaceutical to present 24- MS educational programs across Georgia. The MS On the Move series covers the spectrum of the disease, highlighting such key topics as; diagnosis, symptom management, and therapy options; emotional and psychological Discussion and Dessert impact of MS; Thursday, November 21 – 7:00 pm - 8:30 pm Thursday, September 19 – 7:00 pm - 8:30 pm Employment MS and Employment MS 101 MS can have varying effects on a person’s ability to Taking the first steps in understanding the diagnosis options; and work. This program will help you navigate your employof multiple sclerosis (MS) is critical. This program will Exercise, address what is MS, symptom management and treatment ment options. options. Rehabilitation Thursday, December 19 – 7:00 pm - 8:30 pm and Wellness. Thursday, October 17 – 7:00 pm - 8:30 pm Exercise and Wellness with MS

MS On the Move Savannah

The Emotional Side of Living with MS

The On the Move series is currently being held in the following areas; Athens Brunswick Columbus Macon Savannah Further locations will be announced shortly.

MS is an unpredictable disease that can cause significant anxiety, stress, fear and frustration. This program will teach you helpful tools in managing your emotions and MS.

MS O

Wellness is a dynamic state of physical, emotional, spiritual and social well-being that can be achieved even in the presence of a chronic disease or disability. This program will teach you the importance of incorporating activity and wellness into your life.

*Complementary dessert and coffee will be offered St. Joseph’s Hospital Meeting Room 2 • 11705 Mercy Boulevard • Savannah, GA 31419 *Use the Emergency Room Entrance Wedn esday , Aug MS 1 ust 2 0 1–7 Taking 1 :00 p t m-8 of mu he first step :30 p ltiple s i m n u sc n addre Discu ss wh lerosis (MS derstanding Wedn at is M ) ssion t option esday S, sym is critical. T he diagnos s. , Oct and D MS a is his pr ptom o ber 1 nd Em ogram mana esser 6 Wedn M g – 7:0 will ploym S can emen t esday 0 t h a a p e nd tre ve var m-8 nt work. , Sep The E a : y 3 t i n m t 0 pm This ge embe ent m motio r 18 MS is ent op program w ffects on a – 7:0 an un nal Side t p i i l e o l rs ns. help y 0 pm predic anxiet of Liv ou na on’s ability - 8:30 tab y, Wedn vigate t pm teach stress, fea le disease ing with e your e o ra yo M th mploy Exerc sday, Nove and M u helpful t nd frustrat at can cau S m i ools in se io S. Welln se and W ber 20 – mana n. This prog significant e 7 e s : s 00 p llnes ging y is a spiritu our em ram will al and dynamic st s with M m - 8:30 p otions a m in the s t S prese ocial well-b e of physic Profe n a * eing t progra ce of l, emo Comp ssion ha a ti m leme al Sci activit will teach chronic dise t can be ac onal, ntary ences y h y a d iev o a s e u e nd we Cent er – R Middle ssert and llness the import or disabilit ed even a y c into y offee For more *Plea oom 238 Georgia our lif nce of inco . This w i S se pa l e r l t • p . b oratin e off rk in 100 Co ate Colle g ered information on this the W g l est C lege Stati e ampu o educational series and all programs s par n Drive • king Maco lot n, Ge offered by the Georgia Chapter please visit www. orgia 3120 6

MSgeorgia.org or call 1-800-344-4867. 6

|

JOIN THE MOVEMENT: nationalMSsociety.org

n M the acon

Move


e v o M e h t n O MS Columbus

PROGRAMS

essert

and D Discussion

- 8:30 pm – 7:00 pm 3 2 r e b to y, Oc Wednesda ent m p 0 d Employm ects on a person’s ability to loyn pm - 8:3 a 0 S :0 M 7 – 8 2 rying eff your emp y, August S can have va will help you navigate M Wednesda s m si ra o rog diagn work. This p MS 101 steps in understanding the gram will s. n o ro t ti p p rs This ent o - 8:30 pm Taking the fi atment m S) is critical. e tr (M d s n si a ro t 0 – 7:00 pm n le 2 e r sc m e e le b g a ip m n lt e a u v m of m y, No ptom ith MS Wednesda t is MS, sym address wha Wellness w hysical, emotional, d n a e is c r e p Ex 0 pm mic state of ieved even options. ess is a dyna ll-being that can be ach :00 pm - 8:3 n 7 ll e – W 5 2 r e This l we y, Septemb h MS or disability. it al and socia se u w a it e g ir is d sp in Wednesda ic iv n L t ting nal Side of that can cause significan in the presence of a chro e importance of incorpora io t o m E e h T disease l teach you th ram will predictable life. program wil on. This prog ti ra MS is an un st u fr ss into your e d n n s ll a n e o r w a ti o d fe n , m a e ss r activity anxiety, stre anaging you ful tools in m lp e h u yo ch tea e offered ffee will b o c d n . a S M rt e and Northlake entary dess lumbus at A 31909 o *Complem C ss re p x nE olumbus, G HoTliudesadyaIn ye,aA r Luagnuest• C B 6 3 Discussio 3 7M 20, 2013 S 101 – 7:00 pm n and De - 8:30 pm ssert Taking the Tuesday, first steps O in c t un o of multiple sclerosis (M derstanding the diag MS and E ber 15, 2013 – 7:00 nosis S) is critica m address w pm - 8:30 p loyment l. hat is MS, MS can ha pm symptom m This program will ve varying ment optio anagemen e ff ns. e w c ork. This p t and treatrogram wil ts on a person’s abilit l help you y to ment optio navigate y ns. Tuesday, our employ Septembe r 17, The Emot Tuesday, ional Side 2013 – 7:00 pm - 8:3 Nove MS is an u 0 pm of Living npredictab Exercise a mber 19 – 7:00 pm w it h M le S - 8:30 pm d n anxiety, str isease tha t can cause ess, fear a Wellness is d Wellness with n d s M ignificant a dynamic frustration teach you S state of ph . This prog helpful too spiritual an ram will ysical, emo ls in mana d and MS. s o c ia l w ging your e tio ell-being th in the pres motions at can be a nal, ence of a c chieved ev hronic dise program w en ase or disa ill teach yo bility. This u the impo activity an rt a d wellness nce of inco rporating into your li Holiday In 138 Glyn fe . n & c S o u ParkwDiscussion and Dessert it e *Complem s a entary de y • Brunswick , GA 315 ssert and 25 ffeepm wil-l 8:30 Wednesday, October 9 –co7:00 Wednesday, August 14 – 7:00 pm - 8:30 pm be ofpm fered

MS On th Brunswick

e Move

MS On the Move Athens

MS 101

Taking the first steps in understanding the diagnosis of multiple sclerosis (MS) is critical. This program will address what is MS, symptom management and treatment options. Wednesday, September 11 – 7:00 pm - 8:30 pm

The Emotional Side of Living with MS

MS is an unpredictable disease that can cause significant anxiety, stress, fear and frustration. This program will teach you helpful tools in managing your emotions and MS.

MS and Employment

MS can have varying effects on a person’s ability to work. This program will help you navigate your employment options. Wednesday, November 13 – 7:00 pm - 8:30 pm

Exercise and Wellness with MS

Wellness is a dynamic state of physical, emotional, spiritual and social well-being that can be achieved even in the presence of a chronic disease or disability. This program will teach you the importance of incorporating activity and wellness into your life.

*Complementary dessert and coffee will be offered Holiday Inn Express 513 W Broad Street • Athens, GA 30601

TOLL FREE NUMBER 1 800 344 4867

| 7


Bike MS: Cox atlanta ride SepteMBer 14-15, 2013 » 2 dayS » Multiple optionS regiSter today! » BikeMS.org or Call 800.344.4867 enjoy an extraordinary cycling experience for riders of all skill levels. enjoy varying terrain as you travel through the quaint towns and beautiful country roads of georgia. this 2-day celebration boasts multiple route options, unparalleled support and safety, and the experience of a lifetime.

thank you to our SponSorS:

official Bike Stores:

Affordable Care Act: What People Living with MS Need to Know Teleconference Tuesday, October 8, 2013 7:30pm – 8:30pm To register call 1-800-344-4867, Option 1 or visit www.MSgeorgia.org 8

|

JOIN THE MOVEMENT: nationalMSsociety.org


ADVOCACY

Be a digital MS activist In 2012, MS activists sent tens of thousands of emails, placed hundreds of phone calls, and made hundreds of in-person visits to members of Congress asking for their support on issues important to people with multiple sclerosis and their families. And now there are more ways for MS activists to connect—online.

Driving change Digital MS activists—like all MS activists— want to drive change and do so by amplifying their voice and connecting with elected officials over social media. At www.nationalMSsociety.org/digiMSactivist, learn how to share your story, connect with other MS activists and build relationships through social media and email. The webpage includes ways to: • Get informed. Become part of the MS Activist Network. Receive e-newsletters and Action Alerts about important pieces of legislation. Send emails with a few clicks of your mouse. • Rise up. Learn where your elected officials stand. Speak out on issues important to you as a person affected by MS. • Take Action. Build relationships with elected officials by posting on and liking their social media pages and by thanking them

on Facebook or Twitter for their supportive actions. • Recruit. Encourage others to join the movement by directing them to our video at ntl. ms/YouCanBeAnMSActivist, or to www. nationalMSsociety.org/digiMSactivist. Become a digital MS activist and help shape the conversations today that will drive change tomorrow—we promise you, people will listen!

Dear Colleague “Dear Colleagues” are important tools in supporting legislation that impacts people with multiple sclerosis. They are letters sent by one or two members of Congress to fellow members, usually asking for co-sponsors on a new bill or seeking to influence recipients’ votes on a particular issue. The Society often helps compose letters that support legislation important to people with MS. MS Activists help gain signers through Action Alert emails. This spring, Dear Colleagues were circulated in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program, $32 billion for the National Institutes of Health, and $2.5 million for the Lifespan Respite Program. The Congressional MS Caucus and MS activists are working in coalition with other groups to preserve these funding levels for FY 2014. To join the effort, go to www.nationalMSsociety.org/MSActivist.

TOLL FREE NUMBER 1 800 344 4867

| 9


RESEARCH

Progress at AAN meeting Over 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating neurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN) meeting. Here are a few highlights from the more than 500 MS-related presentations that focused on stopping MS, restoring function and ending MS forever.

Stopping MS Progressive MS STOPPING THE DISEASE

RESTORING WHAT’S BEEN LOST

ENDING MS FOREVER

A small study of an oral blood-pressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primary-progressive MS. Further testing in a larger study is now underway. Researchers in a large trial of Gilenya for primaryprogressive MS reported good progress in setting up the trial. This is one of several ongoing large studies in progressive MS. MS Therapies Results of a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four weeks was effective in reducing relapse rates and

10

|

JOIN THE MOVEMENT: nationalMSsociety.org

Professor Ebers, center, receives the John Dystel Prize from Drs. Timothy Coetzee and Bruce Cohen the risk of progression of disability. The study is continuing into a second year and the trial sponsor Biogen Idec has announced plans to apply for FDA approval later this year. Another one-year phase III trial found that injections of twice the standard dose of glatiramer acetate (Copaxone) taken three times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues. A large study in France (ENIGM) found that among 200 people who switched from natalizumab (Tysabri) to fingolimod (Gilenya), 32% experienced a relapse during the “washout” interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months. Results of two phase III trials of oral dimethyl fumarate (Tecfidera), approved by the FDA in March, suggest that the treatment begins to take full effect after three months’ use. This


RESEARCH on disease disability and progression in future trials.

effect was sustained over the two-year span of the trials. Several presentations focused on results from extension phases of completed clinical trials in relapsing-remitting MS. To read more, visit www.nationalMSsociety.org/2013AAN.

STOPPING THE DISEASE

Restoring function

Exploring disease activity An Argentinian study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse; therefore, people with MS planning a trip to a region with an increased risk of yellow fever should discuss the risks and benefits of vaccination with their doctor. A small study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression. A few studies focused on ways to track disease progression, including one that analyzed serum samples from people with MS who were taking glatiramer acetate (Copaxone). The researchers were able to find antibody profiles that could detect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of the National MS Society described efforts of the newly formed MS Outcome Assessments Consortium to accelerate development of more effective treatments for MS. They will analyze data from completed MS clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that can more sensitively track the impact of therapies STOPPING THE DISEASE

Several studies focused on the benefits of exercise for brain function and MS symptoms such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog posts by MS researchers on these and other studies, visit blog.nationalMSsociety.org.

RESTORING WHAT’S BEEN LOST

RESTORING WHAT’S BEEN LOST

ENDING MS FOREVER

A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.

Ending the disease forever Several reports focused on risk factors for MS, including one indicating that dietary salt may stimulate activity of key immune cells involved in MS attacks. Read more at www. nationalMSsociety.org/dietarysalt. ENDING MS FOREVER

For his extensive work on understanding MS, including the importance of genetic factors in who develops the disease and how genes interact with environmental factors, Professor George Ebers was this year’s recipient of the John Dystel Prize for MS Research, given jointly by the Society and the AAN. Read scientific summaries on the AAN’s website at www.abstracts2view.com/aan.

TOLL FREE NUMBER 1 800 344 4867

| 11


RESEARCH

Making advances in pediatric MS An increasing number of medical centers across the United States are collaborating on research on how and why multiple sclerosis happens in young people. Their work is already yielding valuable information on early MS triggers.

A collaborative approach The Network of Pediatric MS Centers was initiated in 2006 through a grant from the National MS Society. Thanks to its multidisciplinary approach, researchers at participating institutions are gathering important data on the disease. “We have been able to unravel key features, such as distinct characteristics of the disease on the MRI and in the spinal fluid of patients younger than 11,” says Emmanuelle Waubant, PhD, professor of Neurology and Pediatrics at the University of California – San Francisco (UCSF), which is currently running a large study aimed at unraveling the triggers of pediatric MS. [See box at right, “What triggers MS?] Thus far, the network has learned that MRIs of patients under 11 show larger and more poorly defined MS scars compared to adults, and that MS scars in young patients often go away within a few months, which is very rare in

12

|

JOIN THE MOVEMENT: nationalMSsociety.org

adults. They also observed that the spinal fluid of young patients can show more inflammation than in adults. These findings have helped make the way forward clearer. “Now that these distinct features in younger patients have been identified, accurate diagnosis in children with MS is made easier, and early treatment can better prevent disability onset,” says Dr. Waubant. To learn more about pediatric MS and research in the field, visit www.nationalMSsociety.org/ pediatricMS. Originally published in the Gateway Chapter’s MSConnection newsletter.

What triggers MS? The Network of Pediatric MS Centers is currently recruiting 640 children with relapsing-remitting MS or clinically isolated syndrome (a single episode of MS-like symptoms) and 1,280 children without MS for a multiyear study to determine risk factors for developing MS. “We expect the study will provide precious pieces of information on risk factors for MS in general, and maybe help develop new treatments or preventative strategies,” says lead investigator Emmanuelle Waubant, PhD. For more information about participating, and the 13 participating locations, contact janace. hart@ucsf@edu or call (415) 514-2476.


RESEARCH

Progress on ms therapies by Megan Weigel, CNP, ARNP-C, MSCN

In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral dimethyl fumarate (brand name Tecfidera™) by the U.S. Food and Drug Administration (FDA) in March, 2013, we now have 10 diseasemodifying therapies to treat relapsing forms of MS—and more on the horizon. Tecfidera is the third oral therapy approved to treat MS. A related compound, called Fumaderm (dimethyl fumarate and fumeric acid esters), has been used for decades in Europe to treat psoriasis. Tecfidera is a new and different formulation of dimethyl fumarate developed by Biogen Idec specifically to treat MS. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even protect against damage to the brain and spinal cord. Two large phase III studies (the DEFINE and CONFIRM trials) found that Tecfidera significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. Before starting treatment, the FDA recommends a recent (within six months) blood cell count, repeated annually thereafter. The MS Emerging Therapies Collaborative,

which includes the Society, provides downloadable information sheets at www.ms-coalition. org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments such as Tecfidera. Here are potential therapies to keep an eye on as we move forward into 2013 and beyond. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta-1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders. Continued on page 14 TOLL FREE NUMBER 1 800 344 4867

| 13


RESEARCH

Progress on ms therapies Continued from opage 13 Laquinimod is a once-daily oral immune modulator that showed in phase III studies to decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsingremitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits. Research is also underway on potential treatments for progressive forms of MS and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Current clinical trials include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.

Making choices When we consider treatment now, in particular the possibility of switching therapies, we weigh 14

|

JOIN THE MOVEMENT: nationalMSsociety.org

the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at nationalMSsociety. org/signup, or visit nationalMSsociety.org/ research. Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter.


Self-Help Groups georgia Metro Atlanta Based Self-Help Groups African Americans with MS Self-Help Group Contact Info: JoAnn: (404) 932-2662 Email: joanndicksonsm@bellsouth.net Berean Seventh Day Adventist Church 291 Hamilton E. Holmes Drive Atlanta, GA 30318 When do we meet? Meets the 2nd Saturday of every month from 3:00pm - 5:00 pm Atlanta Women’s Self-Help Group Contact Info: Kristin (404) 351-0205 {ext. 110} MS Center of Atlanta 3200 Downwood Circle in the 4th floor MSCA break room, Atlanta, GA When do we meet? Meets the 4th Tuesday of every month from 6:30pm - 8:00pm (No meetings in November and December) Decatur Self-Help Group Contact Info: O.J. (770)-256-2516 Email: ojf2@yahoo.com Green Forest Community Baptist Church 23250 Rainbow Road Decatur, GA 30334 When do we meet? Meets the 2nd Saturday of every month from 10:00am - 12:00pm Lawrenceville Women’s Self-Help Group Contact Info: Karen (678) 975-7167 Location: McKendree Methodist Church 1570 Lawrenceville-Suwanee Rd Lawrenceville, GA 30043 When do we meet? Meets the 2nd Saturday of every month from 10:30am - 12:00pm This group will not be meeting until September MS Institute at Shepard Self-Help Group: “S.H.E.P.S” Contact Info: Rachael (404) 457-4582 Email: rtakei@mac.com Co-Facilitator: Kate Brunson (404) 402-0368 MS Institute at Shepherd 2020 Peachtree Road Atlanta, GA 30309 When do we meet? Meets the 2nd Saturday of every month from 10:00am - 12:00pm

Perimeter – Atlanta Area: “Dine and Discuss: For Partners and Spouses” (This is a “Care Partner Group” not meant for individuals living with MS) Contact Info: Jan (404) 579-6782 Location: LA Madeleine Restaurant at The Perimeter 1165 Perimeter Center West Atlanta, GA 30346 When do we meet? Meets the 2nd Thursday of every month from 7:00pm - 8:30pm Snellville Self-Help Group Contact Info: Vicki (770) 978-1517 Email: Thepomeroys@Gmail.com Co-Facilitator: Lois: (770) 339-6520 Eastside Medical Center 1700 Medical Way SW Snellville, GA 30078 When do we meet? Meets the 4th Saturday of every month from 10:00am - 12:00pm Outside “Metro” Atlanta Based Self-Help Groups Albany Self-Help Group Contact Info: Janet (229) 435-2517 Email: jkhancock45@yahoo.com Phoebe Putney NW Conference Center 2336 Dawson Road Albany, GA 31701 When do we meet? Meets the 1st Monday of every month from 6:00pm - 8:00pm This group does not meet in September Albany -African American Self-Help Group Contac Info: Colette (229) 395-4150 Chosen to Conquer, Inc. 1120 W. Broad Avenue Suite C-1, Albany, GA 31707 When do we meet? Meets the 1st Saturday of every month from 11:00am - 1:00pm Athens MS Family Contact Info: Siri Baker (706) 353-0606 Email: sbaker@athensneuro.com Co-Facilitator: Danielle (706) 983-9802 Email: depps@athensneuro.com Athens Neurological Associates 1086A Baxter Street Athens, GA 30606 TOLL FREE NUMBER 1 800 344 4867

| 15


Self-Help Groups georgia When do we meet? Meets the 3rd Thursday of every other month from 6:00pm - 8:00pm in the months of Jan, Mar, May, July, Sept and Nov Augusta MS Self-Help Group Contact Info: Erin (706) 721-1411 Georgia Health Sciences - MS Center 6th Floor 1120 15th Street Augusta, GA When do we meet? Meets the last Monday of every month from 6:00pm - 7:30pm Cartersville “Bartow County Self-Help Group” Contact Info: Towanda (770) 344-8887 Email: tobme3@gmail.com BBQ Street 650 Henderson Dr. Cartersville, GA When do we meet? Meets the 4th Thursday of every month from 6:30pm - 8:30pm Camilla Self-Help Group “Mitchell County MS Self-Help Group” Contact Info: Lucas (229) 224-5979 Mitchell County Hospital-Community Room 90E. Stephens Street Camilla, GA When do we meet? Meets the 2nd Tuesday of every month from 6:00pm – 7:00pm Columbus, Georgia “Chattahoochee Valley Self-Help Group” Contact Info: Lori (706) 575-6925 Email: lorikiker@yahoo.com Columbus Public Library When do we meet: This group’s schedule changes monthly; please call Lori for updated times and days. Cumming Self-Help Group Contact Info: Anthony (Tony) (678) 455-4139 Email: ravengreen@comcast.net Northside Forsyth Hospital 1400 Doctor Bldg. Cumming, GA When do we meet? Meets the 1st Saturday of every month from 10:00am - 12:00pm

JOIN THE THE MOVEMENT: MOVEMENT: nationalMSsociety.org nationalMSsociety.org 16 || JOIN

Douglasville Self-Help Group Contact Info: Stephanie (770) 577-0408 First Presbyterian Church Parlor Room Douglasville, GA When do we meet? Meets the 3rd Thursday of every month from 7:00pm - 8:30pm Macon - Hope Floats Self-Help Group Contact: Marty (478) 742-9011 Pine Gate 300 Charter Blvd Macon, GA When do we meet? Meets the last Monday of every month from 6:00pm - 8:00pm Newton County Self-Help Group Contact Info: Jean (678) 603-3760 or (724) 822-8507 Newton General Hospital Auditorium Covington, GA When do we meet? Meets the 2nd Tuesday of every month from September - May from 7:00pm - 8:30pm Peachtree City/ Fayettville: “Let’s Lunch: MS Group for Working Professionals” Contact Info: Lynn (612)-655-9901 Email: lynn.meloche@gmail.com Piedmont Fayette Hospital 1255 Highway 54 West: Building 1279 3rd Floor Conference Room D Fayetteville, GA 30214 When do we meet? Meets the last Saturday of the month from 11:00am - 1:00pm Thomaston Self-Help Group “T.A.M.S. Self-Help Group” Contact Info: Sherry (706) 472-3273 or (706) 975-9762 American Pie Pizzeria of Thomaston 710 N. Church Street Thomaston, GA When do we meet? Meets the 3rd Thursday of every month from 12:30pm - 2:00pm Thomasville MS Self-Help Group Contact Info: Mike (229) 346-9746 Plaza Restaurant - Thomasville, GA When do we meet? Meets the 3rd Tuesday of every month from 6:00pm - 8:00pm


Self-Help Groups georgia Valdosta MS Self Help Group Contact Info: Barbara (229) 247-7792 Smith Northview Hospital 4280 North Valdosta Road Valdosta, GA 31602 Located in the cafeteria of the hospital When do we meet? Meets the 3rd Thursday of every month at 6:30pm

Savannah Based Self-Help Groups

Vidalia Self-Help Group “Looking Good Self-Help Group” Contact Info: Paula (912) 538-0142 Email: nonerves@bellsouth.net Tree House 723 North Street West Highway 292 Vidalia, GA When do we meet? Meets the 2nd Tuesday of every other month from 7:00pm - 9:00pm

Savannah Self-Help Group –“PRYME2” Contact Info: Virginia (912) 355-5832 Email: vmorriso@bellsouth.net One of the rooms in St. Joseph Hospital When do we meet? Meets the 2nd Tuesday of each month at 6:00pm Please call Virginia to confirm location and meeting dates.

Waleska Self Help Group Contact Info: Jennifer Email: jjaress1@gmail.com Cherokee Outdoor Family YMCA G. Cecil Pruett Community Center Family YMCA 151 Waleska St. Canton, GA 30114 When do we meet? Meets the 2nd Tuesday of every month from 6:00pm - 7:30pm

Telephone Based Self-Help Group

Warner Robins “Middle GA Self-Help Group” Contact Info: Michelle (478) 335-4675 Email: msmidga@yahoo.com Houston Medical Center, LL, North Tower 1601 Watson Blvd. Warner Robins, GA When do we meet? Meets the 2nd Tuesday of every month from 6:30pm - 8:30pm Woodstock MS Self-Help Group Contact Info: Zaida (770)-485-4226 St. Michael the Archangel Church inside the main church building 490 Arnold Mill Rd. Woodstock, GA 30188 When do we meet? Meets the 3rd Saturday of every month from 11:00am-1:00pm (No meetings in July and August) This group starts its meetings with a short opening prayer

Pooler Self-Help Group “Pooler’s Positive Movers and Shakers: MS Share & Support Group” Contact Info: Andraya: (912) 658-9629 or PoolersPositiveMS@gmail.com

Statesboro Supports Contact Info: Carolyn: (912) 531-0416 ***This is a telephone support group. Please contact Carolyn for additional information. ***The National MS Society is a secular organization, welcoming those of every faith, and those that espouse none. *** Please contact the Self-Help Group leaders prior to attending a group meeting to assure that the meeting time, date, and location are accurate. Groups occasionally change their meeting schedules to participate in other National MS Society events. Please note, our Self Help Group leaders are volunteers who have been trained by the National MS Society. They are not necessarily licensed mental health providers. Please respect their role as a volunteer and contact them during reasonable hours of 8am8pm. If you are facing an immediate crisis please dial 911. For more information on attending Self-Help Groups or starting Self-Help Groups in your community please call 678-672-1000 OR 1-800-FIGHTMS

TOLL FREE NUMBER 1 800 344 4867

| 17


Turn static files into dynamic content formats.

Create a flipbook
Issuu converts static files into: digital portfolios, online yearbooks, online catalogs, digital photo albums and more. Sign up and create your flipbook.