MOVING TOWARD A WORLD FREE OF MS VOLUME 8 • EDITION 1
The Power to Change Kevin Lombardi & the Lombardi Party Page 14
In this Issue
Meet the new Georgia Chapter Staff Members - Pages 3-4
2015 Annual Meeting Award Recipients Page 11 - 13
MS Activism - Medical Marijuana in Georgia Pages 16 - 17
A Healthy Sex Life with MS Pages 20-21
Special Events: Walk MS & Bike MS Pages 22 - 25
MS Connection 1-800-344-4867 PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY Georgia Chapter • 950 East Paces Ferry Road, NE Ste. 110 • Atlanta, GA 30326 Chairman. . . . . . . . . . . . . . . . Annette Mengert Vice Chair . . . . . . . . . . . . . . . Keith Keller Secretary. . . . . . . . . . . . . . . . Denise Dauphin Treasurer. . . . . . . . . . . . . . . . Phillip Hodges 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. © 2014 National Multiple Sclerosis Society, Georgia Chapter
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Are you looking for a Self-Help Group or Peer Supporter in your community? Are you looking for a Self-Help Group or Peer Supporter in your community? Whether you just received a MS diagnosis or have been living with MS for a long time, the National MS Society, GA Chapter, has impactful programs available where you can find support and experience-based guidance on how to live a productive and happy life with MS. 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. To find Self-Help Groups near you, call an MS Navigator at 1-800-344-4867. Peer Supporters are trained individuals living with MS or have a family member living with MS. Via telephone, our Peer Supporters, called “MS Friends,” 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 GA Chapter Office at 1-800-344-4867 or e-mail the GA Chapter’s Services Manager, Carole Anderson, at carole.anderson@nmss.org For general information about the support resources available through the National MS Society, please visit http://www.nationalmssociety.org/Resources-Support/ Find-Support.
See complete listing of Self-Help Groups in Georgia on Page 16.
Welcome the Georgia Chapter’s Newest Staff Members William (Bill) R. Barney, III Development Director It is with great pleasure that we announce to you that Bill Barney has joined the National MS Society – Georgia Chapter as Director of Development. Bill will oversee the special events team to develop and align human, business and financial resources to achieve the Chapter’s fundraising goals. He will focus much of his time on Bike MS, especially in the area of participant engagement, team development and corporate partnerships. Bill has a personal connection to MS and has been very active with the National MS Society in the Southeast and South Central Regions for the past 7 years. Bill was the recipient of the Georgia Chapter’s 2014 Fundraising Award and is an alum of the MS Leadership Class. Most recently, Bill was the owner of Play It Again Sports, a successful sporting goods franchise based in Atlanta. He sold the franchise a year ago and his retirement was short-lived. Among other community endeavors, he is a member of Buckhead Rotary Club. Bill is active in cycling, tennis, golf, skiing, and technical mountain climbing. Bill Barney William.Barney@nmss.org (678) 534-3589
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Pamela Owunta, MSW Development Manager, Team MS Join us in welcoming Pamela (Pam) Owunta as the new Development Manager for Team MS at the National MS Society Georgia Chapter. Pam is responsible for the cultivation and management of event teams for the Walk MS and Bike MS events. Additionally, she will oversee the recruitment and management of chapter volunteers and interns. With over eight years of experience in nonprofit management, Pam, a native of New Orleans, has worked with a number of community agencies and nonprofits in the Metro Atlanta area. A few of her past roles include Fundraising Program Manager with the Atlanta Hawks Foundation, Community Resource Manager with the Furniture Bank of Metro Atlanta, and Public Health Educator with the Clayton County Board of Health. Pam is a proud graduate of the University of Georgia, where she received her Masters of Social Work (Concentration in Community Empowerment & Program Development) along with a Graduate Certificate in Non-Profit Management. She earned a Bachelor of Science in Family & Consumer Sciences from Nicholls State University. Pamela Owunta Pamela.Owunta@nmss.org (678) 534-3653
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THE VOICES of people affected by MS ARE HEARD and DRIVE CHANGE wherever it is needed.
SUSAN, ARTIST, MS ACTIVIST, DONOR, WALK MS FUNDRAISER DIAGNOSED IN 1988
MS AWARNESS WEEK : MARCH 2 - 8, 2015
TOLL FREE NUMBER 1 800 344 4867 | 5 Every Connection Counts at MSconnection.org
MINORITIES LIVING with MS WORKSHOP SAVE THE DATE MAY 15, 2015 Most people with MS are diagnosed between the ages of 20 and 40. While women more often than men are diagnosed, there is a pervasive myth that minority populations, including Hispanic and African Americans, are not diagnosed with multiple sclerosis (MS). It is important to shatter that myth. MS is now a treatable disease, and all evidence indicates the earlier one is diagnosed and treated, the increased likelihood they will live a long-term healthy life. Although MS is two to three times more common in women than in men, it typically affects African Americans, Hispanics, and Caucasians differently. There is an alarming concern that multiple sclerosis goes largely undiagnosed in minority and under-served populations including Hispanics and African Americans, due to the following: • African Americans are more likely to experience relapses • African Americans are more likely to experience greater disability • African Americans have a greater risk of progressing to require ambulatory assistance earlier • African Americans are more likely to develop involvement of optic nerves and spinal cord (optico-spinal MS) and inflammation of the spinal cord (transverse myelitis) • Hispanics / Latinos face a number of potential roadblocks to quality care. These may include language barriers for Spanish speakers, cultural differences that can lead to serious misunderstandings and, for undocumented immigrants, a fear of being deported if they seek medical help, as well as reduced access to programs that provide low-cost MRIs or medications The National MS Society’s “Minorities Living with MS” program provides the knowledge and opportunities necessary for people to make informed, thoughtful decisions about their health care. Additionally, the program will help people establish an effective partnership with their physician and other health care providers and establish a support system that will enhance their ability to cope with the many demands of MS. 6
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MONEY MATTERS
UPDATE ON WORK INCENTIVES BY STEVE NISSEN
As of January 1, 2015, Social Security beneficiaries received a 1.7% cost of living adjustment, or COLA. However, COLA affects more than the monthly benefit check that Social Security Disability Insurance (SSDI) recipients receive. It also affects certain work incentives that may prove useful when people with multiple sclerosis attempt to return to work.
THE TRIAL WORK PERIOD (TWP) For individuals who receive SSDI, the trial work period (TWP) allows them to retain their full financial SSDI benefits while they test their ability to work. The TWP comprises nine months in a 60-month time period (the nine months do not have to be consecutive). For 2015, the amount that a person with MS can earn to count toward the TWP has been increased from $770 per month gross income to $780 per month gross income. Full benefits continue during this time regardless of how much a person earns.
SUBSTANTIAL GAINFUL ACTIVITY (SGA) After a person completes their TWP, they can take advantage of the Substantial Gainful Activity
incentive, which helps people transition back to work. For 2015, the SGA has been increased from $1070 per month gross income to $1090 per month gross income for non-blind individuals. For individuals who are statutorily blind, the SGA has increased from $1800/month gross income to $1820/month gross income.
DO YOUR RESEARCH It’s important to note that once a person’s monthly income exceeds the SGA, his or her SSDI benefits may cease. Before doing anything that could jeopardize your benefits, be sure to do your research on what impact work may have on your benefits. Below are some helpful tips: • Contact your local Work Incentive Planning and Assistance (WIPA) program and speak with a Community Work Incentive Coordinator (CWIC). • Visit www.socialsecurity.gov/work/WIPA. html for information about the WIPA program. • Call the National MS Society at 1-800-3444867 to speak with an MS Navigator who can connect you with your local WIPA program, or visit www.chooseworkttw.net/findhelp/. • Learn more about Social Security work incentives by participating in a Work Incentive Seminar Event online webinar. For information about upcoming events, or to access archived webinars, visit www.choosework.net/wise. n Steve W. Nissen, MS, CRC, is the Society’s senior director of Employment & Community Programs.
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WAYS TO GIVE
THE POWER TO CHANGE The Lombardi Par ty began in 2006, when Kevin Lombardi walked 50 miles in Challenge Walk MS on Cape Cod to support family members who had been diagnosed with multiple sclerosis. Today, the Lombardi Party has become a family tradition, with a network of supporters c o m i n g t og e t h e r e a c h ye a r. K e v i n Lombardi agreed to talk with the National MS Society about his commitment to the MS movement.
Q: HOW HAS MS AFFECTED YOUR FAMILY? A: My family has the unenviable distinction of three generations of MS diagnoses. My mother, Carmella, fought a very silent battle with the disease and passed three years ago as a result of complications from MS. My older brother Carl was diagnosed about 13 years ago at the age of 49 and his daughter, my niece Melissa, was diagnosed almost three years ago. I also have two first cousins–Debbie and Roseann–who live with MS. When I first learned of my mother’s MS, it took a while to resonate with me. I was just an average person with zero ability to change anything–or so I thought.
Q: HOW DID YOU FEEL WHEN YOUR BROTHER AND NIECE WERE DIAGNOSED? A: I am angered by this attack on my family. I am fearful it won’t stop at my niece so I am 8
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THE LOMBARDI PARTY WILL FIND YOU A PLACE committed until we end MS. That is one of the many lessons I have learned through my connection with the Society. We are a community of people who find strength and, subsequently, the resources to endure. We may be down for a day or two (sometimes a month) but we always get up and move on no matter what the circumstance.
Q: WHAT DRIVES YOU TO RAISE MONEY TO SUPPORT THE MS MOVEMENT? A: Fear! I am tired of hearing that someone I know knows someone with MS–enough already! I mentioned previously that I did not think I could make a difference. That changed when I did my first Challenge Walk MS in 2006. That was a life-changing experience–not only because of the amazing support and donations I received from my friends, but because of the people I met. On the second day, about 30 miles in, a man approached me wearing a plastic soldier’s helmet. He said: “Kevin, one day soon we are going to beat this disease and when that day comes we will find another cause. Thank you for doing this for my bride.” That day I committed to utilizing my skills to do something outstanding.
Q: WHAT WAS YOUR FIRST FUNDRAISING EXPERIENCE? A: Our first event for the Lombardi Party Challenge Walk MS team was our Comedy Night fundraiser. To date, we have raised over $50,000 as a result of this event alone. And it has become the annual kick-off event for our fundraising. We now have 7 to 10 events per year, including the Lombardi Cocktail Party, Rock the Walk Concert, and more. I have no problem asking for donations. This is critical in fundraising. I am in sales and believe nothing in this country moves unless something is sold. I was awestruck by how many friends were willing to support us, but more importantly by how many have been personally impacted by this disease.
Q: HOW HAS YOUR FUNDRAISING GROWN? A: When the Lombardi Party started eight years ago, we had no goals. Today, we set goals and not all are revenue related. Our ultimate objective is to recruit new people to our cause. We have recruited walkers, cyclists (Lombardi Party Bike Team), MuckFest MS participants (Lombardi’s Muckers), stair climbers (Chili Head Climb Team) and volunteers. If you have the time and desire, there’s a place for you in the Lombardi Party. That first year I raised more than $3,000; last year, we raised well over $100,000. I am most proud of the community of individuals and teams who make up the Lombardi Party.
great things. n Originally published in the Greater New England MS Connection newsletter.
JOIN THE MOVEMENT There are many ways you can give and help end MS forever. From supporting a Bike MS team to attending a Do It Yourself fundraiser, you can make your gift personal and meaningful. You can also ask your employer if they participate in a matching gift program. For more information, please visit www.nationalMSsociety.org/ Donate or call 1-800-344-4867. Visit www.DIYMS.org to find out how to support the MS movement your own way.
Q: WHAT MESSAGE WOULD YOU LIKE TO SEND TO THOSE WITH LOVED ONES WITH MS? A: Join us and get involved! Align with a volunteer or a team (Bike, Walk, etc.) and learn how you can contribute and achieve TOLL FREE NUMBER 1 800 344 4867
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CHALLENGE WALK MS: SAVANNAH MARCH 6-8, 2015
3 DAYS. 50 MILES. CONNECT TO END MULTIPLE SCLEROSIS REGISTER NOW: challengeMS.org or 1.800.344.4867
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Congratulations
2015 Annual Meeting & Volunteer Award Recipients
Celebrate the Good Times: Events of a Lifetime
Volunteers of the Year: David Furmanski & Mark Moss
David Furmanski has served on the Bike MS Planning Committee since 2013. Since 2012 he has raised a total of $4000 through Bike MS and currently is on the 2015 Top 100 Fundraisers Club list as # 64
Mark Moss
Mark has served on the Bike MS Planning Committee since 2012 serving as the Route Marking Chair for Bike MS. He continues to play a vital role to the success of the event. He also serves as a logistics volunteer for Walk MS in Atlanta and Marietta.
Hope Award: Deborah Backus, PhD
Dr. Backus serves as the Director of Multiple Sclerosis Research at The Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shepherd Center and is the Research Ambassador for the National MS Society - Southeast Region. Her work represents a collective of passionate people who want to do something about MS NOW, united in our commitment to people affected by MS, and in our determination to create a world free of multiple sclerosis.
Medical Professional of the Year: Jeffrey English, MD
Dr. English serves as the Clinical Research Director at the MS Center of Atlanta. His life-long passion for providing quality MS care to people and their families affected by MS brings hope and assurance that they can live their best lives with MS. Dr. English previously served on the Georgia Chapter Board of Trustees. TOLL FREE NUMBER 1 800 344 4867
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Annual Meeting Continued Service Provider of the Year: Medical Aid Supply House
Medical Aid Supply House provides the tools and support resources to sustain a positive outlook and resiliency in the face of the many challenges that come with living with MS. As the National MS Society increases access to high quality, comprehensive care for people with MS and their families, Medical Aid Supply House’s leadership in providing timely, customized response to personal and family needs brings hope to people living with MS
Peer Connections Leader of the Year: Lori Kiker
Lori Kiker is the Leader of the Chattahoochee Valley Self Help Group. Her leadership role empowers and motivates others to have the best life possible. She brings hope, even when it is evident MS takes so much away. Her leadership and guidance as a peer connection volunteer and her tireless efforts in providing emotional and educational support foster transformational change consistent with good health and wellness.
Fundraiser of the Year: The Agnello Family
The Agnello family knows that unity in our action is what ultimately drives progress. Their selfless commitment and extraordinary contributions to our special events continue to inspire meaningful partnerships as we connect ideas and vital resources to accelerate the development of new therapies for MS. In 10 years the Agnello family has raised over $215,000 throught Bike MS & Walk MS.
Community Partnership Award: The Coca-Cola Company
The Coca-Cola Company has contributed over 1 million dollars during its 10 year relationship with the Nationa MS Socciety, Georgia Chapter. The company’s selfless commitment to people living with MS is a testament to its core values, sustaining a culture of excellence and placing a meaningful priority in giving. The extraordinary engagement of volunteers and the generosity of the company’s financial resources demonstrate individually and collectively compassion for the health and well-being of people living with MS. 12
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Rising Star Award: Phillip Hodges
Phillip Hodges participated in the 2014 MS Leadership Class program and raised over $37,000 for MS research. He is the top fundraiser on the 2015 Hall of Fame and currently serves on the Georgia Chapter Board of Trustees as Treasurer. Phillip’s ability to orchestrate community resources and motivate donors for the benefit of people living with MS captures and affirms what it is to make notable contributions toward our mission, and makes him the ideal recipient of this distinguished award.
Special Recognition: Gerry Klaskala
Gerry Klaskala was the mastermind behind the MS Wine Event: Harvest for a Cure. He seized the challenge and made an immediate difference in advancing research for a cure to multiple sclerosis. More than that, Gerry set the template for an event that will pay dividends to the National MS Society for years to come. His passion and the extraordinary success of our inaugural event has increased MS awareness, and influenced and created visibility for an audience that may have relatively little knowledge of our mission.
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MS- the insidious, miserable, devastating, unpredictable, incurable, expensive, and completely ridiculous disease. Tim Britt - MS Leadership Class 2015
MS is an insidious, miserable, devastating, unpredictable, incurable, expensive, and utterly ridiculous disease that shows up completely uninvited to a person’s Prime of Life. For some, it sneaks into their lives with some “pins and needles” in their feet. For others, maybe some fuzzy or double-vision when driving home, or it might just kick in the front door and drop off a wheelchair. For me, it was none of those things and that’s why I call it a ridiculous disease. In 1991, I was 26 - which most would agree is prime time of life. I was getting dressed for work, slipped on my shirt and started to button it up. One, two, three buttons - check. Button four nope. Try again - nope. And again. And again. And again. My fingers simply would not do what I wanted them to do. It was an odd feeling, but I had to go to work, so I asked my confused roommate to button the rest of my shirt and tie my tie. That’s how MS waltzed into my life: uncooperative fingers. Now, here’s the ridiculous part. Flash forward 17 years: I’m walking through Macy’s in NYC at Christmas time with my wife (with fingers that had not ever failed me again) and I suddenly stop. I look around and tell my wife that I feel like I’m going to walk into every display in the store. All of a sudden I could not walk straight. Over the past six years, walking straight only happens with a cane or walking sticks. Walking for more than 10 minutes doesn’t happen at all without resting. Terrible balance, brutal fatigue, and dead14
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ened, stiff legs and feet are what this ridiculous disease presented to me. And I am unbelievably lucky! When people ask...Why I have joined the MS Leadership Class? I say, I am part of the MS Leadership Class because I want to make a difference in the lives of people who have been diagnosed. I want to do everything I can to prevent more people from learning what it means to live with this disease. I believe that together we can and we will find a cure and create a world free of MS. Why I Ask for Your Support I said I was lucky. When I was diagnosed in 1991, there where no treatments available. Zero. My neurologist at the time actually said, “Eat right, excercise and I hope I never see you again. That’s all I’ve got.” I was lucky enough to not have any significant disability for 17 years. When MS reared its ridiculous head again in 2008, I was in my forties, owned a business and had two small children. But, thanks to tireless research, in part funded by the National Multiple Sclerosis Society, there were 8 FDA-approved treatments. Today, there are 12 with more in various stages of testing and approval. The National Multiple Sclerosis Society will use funds collected from the MS Leadership Class to
drive research that addresses the challenges of everyone affected by MS and one day find a cure for this insidious, miserable, devastating, unpredictable, incurable, expensive, and completely ridiculous disease.
T O O L K I T• T O O L K I T•T O O L K I T•T O O L K I T• T O O L K I T• T O O L K I T• T O O L K I T• T O OL KIT•TOOL KIT• Congratulations to the 49 business men and women T O O Lwho K Ijoined T the 2015 MS Leadership Class!
The MS Leadership Class officially began on January 29th at the MS Annual Meeting and Volunteer Recognition Celebration. The MS Leadership Class will spend time networking with respected members of the local business community through special events, community service projects and classroom-style seminars. Class members have attended an MS Educational Program and Tour at the Andrew C. Carlos MS Institute at Shepherd. They will refine their leadership skills through leadership workshops and seminars led by companies such as Dale Carnegie of Georgia and PricewaterhouseCoopers LLP. The class will volunteer at MS Walk: Marietta or MS Walk: Atlanta assisting with site set-up, breakpoints, and site break-down. Class members have also committed to raise funds for MS research. The class participants’ commitment and fundraising efforts will help the National MS Society fund global research development as we work together to end multiple sclerosis forever.
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Advovacy Update
Haleigh’s Hope Act - H.B. 1 Cannabinoid Oil to Treat Medical Symptoms, Including Multiple Sclerosis This legislative session, the first bill pre-filed and introduced in the Georgia House of Representatives (H.B. 1) authorizes the use of cannabinoid (CBD) oil to treat symptoms of many diseases, including multiple sclerosis (MS). CBD oil is a derivative of cannabis, more commonly referred to as marijuana. At present, marijuana is classified as a Schedule I Agent by the federal government, meaning it has no known medical use and an increased potential for abuse. However, a reevaluation of the efficacy of medical marijuana for medicinal use is under way following recent positive studies on the use of medical marijuana and the testimony of patients with neurological disorders. H.B. 1 was introduced by Rep. Allen Peake (R-141). He introduced a similar bill last session that very nearly passed. Both bills are colloquially referred to as “Haleigh’s Hope,” named after a former Georgia child with severe seizures who was forced to move to Colorado so that her parents could purchase and administer CBD oil to ease her symptoms. The purpose of the bill is to make sure that other residents of Georgia don’t have to make a choice between their home and their child. Though CBD oil is a derivative of cannabis, 16
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it does not possess the potential to get the user “high.” It is also not smoked, but rather administered orally, like a pill. As of February 10th, MS is one of approximately a dozen diseases listed in the bill as being authorized for the use of CBD oil to treat symptoms, along with A.I.D.S., glaucoma, cancer, A.L.S., seizure disorders, Crohn’s disease, and several others. Though MS is listed in the bill, the scientific research on the effectiveness of medical marijuana on MS symptoms is somewhat mixed. At the national level, the Society has used several studies to formulate its current position. One, a large placebo-controlled clinical trial involving 660 people with different forms of MS to determine whether taking capsules of extracts of marijuana and THC (tetrohydrocannabinol, an active ingredient in marijuana) could help control spasticity, found that though spasticity did not diminish by objective measurements, patients with MS reported subjective improvements in spasticity and pain. In other words, participants reported feeling improvements that could not be confirmed by the study physicians. Another controlled study found that nabiximols—an oral spray derived from cannabis—significantly improved spasticity in a proportion of people with MS who had been identified as likely
to respond to the therapy. As a result of the second study, nabiximols are now available in eleven countries (though not the U.S.) to treat MS symptoms. Other data to support the use of medical marijuana to treat MS is hard to come by. Marijuana’s Schedule I classification by the D.E.A. and the F.D.A. means it is difficult to conduct research on the drug in the U.S. At present, H.B. 1 does not contain much support for further researching the effects of CBD oil, specifically, or medical marijuana, generally. As a result, the Society has declined to support the bill outright. We would like to see more data on the effects of medical marijuana in treating symptoms of MS before we advocate fully on the issue. However, because the science is mixed and the Society has heard from people living with MS that medical marijuana provides them some measure of relief, the Society encourages those who feel strongly about the issue to independently advocate on its behalf. The Society will not stand in the way of people living with MS making personal choices about the types of treatments that work best for them. Currently, H.B. 1 is under review by Georgia’s House Judiciary Non-Civil Committee. While in committee, the bill will be revised and edited to obtain the greatest number of possible votes once it is sent to the floor for a vote by the full House of Representatives. Committees frequently invite testimony and personal statements from constituents who would be affected by the bill in question so that they may produce the most informed piece of legislation possible. If you would like to speak at the committee hearings or inform
your legislator of your position on H.B. 1, please feel free to contact them. You can search for your state representative at the following url. http://www.senate.ga.gov/senators/ en-US/FindyourLegislator.aspx. Additional information about marijuana as a complementary or alternative medication is available on the Society website, http://www. nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Marijuana.
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Research Corner
A note about stem cells and MS Research article by Dr. Deborah Backus
There has been a recent surge of news stories related to studies of the safety and effectiveness of stem cell transplantation in people with MS (for example, Nash et al JAMA Neurol, published online December 29, 2014). Understanding the research that was done and the implications - independent of the news headlines - is critical for people living with MS. Many people, including researchers, are excited about the potential for stem cells to treat, may even cure, some diseases, such as MS. This is because stem cells have the potential to develop into different cell types in the body over the course of one’s lifetime. Stem cells may be able to repair injury, such as spinal cord injury or burns. They show promise for treatment of various diseases, such as heart disease, stroke, Parkinson’s disease and diabetes, and now for MS. In one set of experiments, researchers used peripheral blood stem cells obtained from the person with MS to then be used on them self (autologous). Each person was treated with high dose prednisone before and after their own stem cells were infused into their body. This treatment with prednisone was to reduce fever and relapse. Participants in the study also received chemotherapy before they were given the stem cells. The main question the research-
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ers wanted to address was related to disease activity or disability due to the MS, called “time to treatment failure”, during the first 5 years after treatment. Researchers monitored the participants for MS-related lesions in the brain, a relapse, or a change in function measured by a scale called the Kurtzke Expanded Disability Status Scale (EDSS). The scale ranges from 0 to 10 and the lower the number the higher degree of ambulatory ability. The participants in this study were between 18 and 60 years of age, and all had relapsing remitting MS (RRMS) for less than 15 years. They could still walk but were limited in some daily activities, and had an EDSS score of 3.0 to 5.5 when enrolled into the study. They had to have failed disease modifying therapy, which means that they had 2 or more clinically defined relapses during 18 months of therapy and an increase in the EDSS score that remained for 4 or more weeks. It is important to note that this is an ongoing Phase 2 clinical trial, and that there is no control group. This means that the outcomes in these participants are not compared to a group that did not receive the treatment. Therefore, it is difficult to know if the treatment with the prednisone, chemotherapy and stem cells together led to the changes that are reported, or if one component of this (for example the stem
cells themselves) was the most critical for any changes that were seen. The survival rate (the rate of no relapse for a specific time) was estimated to be 82.8% at 2 years and 78.4% at 3 years for this study. This is better than earlier studies with a disease modifying therapy, which were 37% at 2 years and 7% at 3 years. In addition, unlike earlier studies of disease modifying therapies, participants in this study experienced a decrease in disease activity, measured by the number of relapses and survival rate, and MRI (imaging of the brain). There were also improvements in function in the first 3 years, as measured by the EDSS. Also of importance, participants in the study also reported an improved quality of life. Treatment failed in 2 participants after the first 3 years. The researchers will follow the remaining participants through 5 years to see if what they already observed remains. Stem cell treatment is associated with significant risks. There were a number of adverse events reported in this study, but most were expected. Adverse events reported included gastrointestinal disorders, infections, and nervous system impairments, such as headaches, changes in sensation, and blurred vision. There were also reports of deep vein thrombosis (blockage in blood vessels), cardiac (heart) impairments, and pulmonary (lung) problems. Out of 24 participants, there were 2 participants who had an MS exacerbation. One died 2.5 years after treatment with stem cells, but this was not thought to be caused by the stem cells. In another study, people with MS were treated with immune-suppressing therapy followed by transplantation of blood stem cells (Burt et al.
JAMA. 2015;313(3):275-284). In this case series about half of 145 participants with RRMS showed an improvement in their EDSS scores at year 2, and 64% did so at year 4, as well as a decrease in disease activity in the brain. People with secondary progressive MS or who had MS greater than 10 years did not demonstrate the same improvements These findings are indeed promising, but in order for any treatment to be considered as a reasonable option by people with MS, the effectiveness will need to outweigh the risks. Despite the promise and excitement surrounding stem cells, there is much we do not know about the types of stem cells to use, whether they are safe and effective, or what is the best way to deliver stem cells. This will require not only completion of this 5-year study, and comparison to other trials, but well-controlled clinical trials before we will know if the effectiveness is greater than the risk for people with MS.
Deborah Backus, PT, PhD, FACRM Director of Multiple Sclerosis Research The Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shepherd Center
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Healthy Living
How to Have a Healthy SEX Life When you have Multiple Sclerosis If you feel that multiple sclerosis (MS) has affected your sex life, you’re not alone. Many people with MS experience some degree of reduced libido affecting both sexual pleasure and function, according to a study published in the journal Expert Review of Neurotherapeutics. However, once you understand how MS leads to problems with sex, you can start to overcome them and improve your sex life. First, MS directly affects your sexual organs or sexual response, usually because of its impact on key nerves, explains Nicholas LaRocca, PhD, vice president of health care delivery and policy research at the National Multiple Sclerosis Society. MS affects the central nervous system and, therefore, your sexual response and function. For men, this can mean difficulty having or maintaining an erection (the most common sexual problem related to MS). For women, they may not create enough vaginal lubrication. You may experience hypersensitivity or reduced sensitivity and may have trouble achieving orgasm even if you desire sex. There also are secondary reasons for problems related to sexual desire, such as MS-related fatigue and depression. You may experience odd sensations that may feel like pins and needles. Or you might have tingling, pain, or spasticity 20
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in your muscles. Some MS symptoms may be so personal that you may have a difficult time telling your partner about them and decide to simply avoid sex instead. “Bladder and bowel control problems can present some fairly significant challenges,” Dr. LaRocca says. “Those kinds of symptoms are not directly related to sexual machinery, but can interfere with interest and ability to participate in sex.” The emotional impact of MS can also interfere with sex because it can erode your self-esteem and confidence as well as the romantic relationship itself. “Many individuals with MS no longer see themselves as sexually desirable, and this negatively impacts their sex lives as well,” says MS specialist Donna Graves, MD, an assistant professor of neurology and neurotherapeutics at the University of Texas Southwestern Medical Center at Dallas. If you have a partner, the stress of living with MS might be draining all the energy you once put into the relationship. Even if you’re in a committed, long-term relationship, MS could cause role reversals — maybe you were the caregiver and now you are the one who needs care. MS can lead to other stresses, such as job loss, that can change the experience of sex. “For a single person with MS who may want
to have a sexual encounter with a boyfriend or girlfriend, there may be some hesitation and concern with revealing the problems involved,” LaRocca points out. “One of the biggest losses is that loss of spontaneity because some of the MS symptoms require a lot more preparation.”
Regaining Your Sexual Pleasure Romance and MS don’t have to be mutually exclusive. Although you might find it embarrassing or difficult, communication — with both your partner and your medical team — is the first step to revitalizing libido. Sexual dysfunction can strain personal relationships, and it is important to keep an open dialogue with your partner. “I often recommend to my patients that they plan a date night,” Dr. Graves says. “Sex often needs to be a planned event for individuals with MS, so plan a time with no distractions and coordinate medications in order to optimize control of symptoms that may interfere with sex.” Graves also stressed the importance of working with your medical team. “In our clinic, we make a practice of asking about sexual function, as this is an often-ignored issue but can have a major impact on families,” she says. Graves explained that several available treatments can restore a diminished sex drive and rekindle romantic feelings.
dysfunction. A review of published clinical trials, for example, has shown that sildenafil citrate (Viagra) can successfully help men with MS achieve erection and complete penetration, improving quality of life as a result. • Lubrication. Lubricants can improve women’s sexual pleasure and function. • Sex therapy. Specific techniques and creative sex play can provide stimulation and help you achieve sexual satisfaction. • Therapy. Individual or couples’ therapy could help both partners work on sources of stress or depression that may interfere with sex, and facilitate ways to be more supportive of each other. An analysis of sexual satisfaction in 81 adults with MS, published in the journal Rehabilitation Psychology, revealed that people who felt their partners provided more positive support also reported greater sexual satisfaction. Talk with your medical caregiver about what treatment or combination of treatments would be most helpful for you. Sexual dysfunction is quite common, so chances are your doctor is more comfortable with the topic than you think, Graves says. He or she may refer you to other experts, such as a urologist, a therapist, or both.
Options include: • Medication. Oral medications, injections, and implants may help overcome erectile TOLL FREE NUMBER 1 800 344 4867
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Much Stonger than MS Malika Jones, Team Captain
“Walk MS is where we connect. We want you to join, if you do, you’re the best!” Those were the last words from my mouth at the Georgia Highlands College fourth annual Public Speech Competition. I was so nervous but I tried to not let it show. I stumbled across a few words, even dropped my visual aid behind a double sided board, into which I could not reach to pick up. At that moment I thought, “That’s it, you’ve lost.” But surprisingly I didn’t. I took first place out of forty-two contestants. I couldn’t believe it. I was told my speech was informative and persuasive. Heck, I didn’t know what MS was until my physician uttered those four words that caused me to think my life was over “You have Multiple Sclerosis.” Not only did I inform the public about Multiple Sclerosis but I even persuaded some to donate and join my Walk MS team. I didn’t know I had it in me. Before my speech I was afraid to tell anyone that I have Multiple Sclerosis. I actually thought my life was over. Now, I’m an advocate for rights of people living with MS , supporter of the National MS Society & Walk MS: Georgia. This year my team and I will participate at the Walk MS: Georgia events in Atlanta, Columbus and Rome. Our advocacy efforts and fundraising connects us to the movement to change the world and end MS forever.
VOLUNTEER Thanks to you we wrapped up a great 2014 event season. We now look forward to a successful 2015, beginning with Walk MS this spring. The Georgia Chapter is currently recruiting awesome volunteers like YOU, to volunteer at Walk MS: Georgia. As you may already know, we have 9 Walk MS events throughout the state that connect people living with MS and those who care about ending MS forever. The success of Walk MS depends on volunteers like you! Each volunteer’s contribution, large or small, is critical to the success of our events. With volunteer roles like registration, food and beverage, t-shirts, route marking, and setup, there is something for everyone to do. Connect with us at Walk MS: Georgia 2015! • • • • •
March 21st – Albany, Athens, & Augusta March 28th – Marietta April 11th – Columbus, Macon, & Rome April 25th – Atlanta May 2nd - Savannah
For more information or to register to volunteer please contact pamela.owunta@nmss.org or (678) 5343653. 22 | JOIN THE MOVEMENT: nationalMSsociety.org
REGISTER TODAY Georgia 2015
walkMS.org or 1.800.344.4867
2014 Walk MS Team- Much Stronger Than MS
MARCH 21, 2015
MARCH 28, 2015
APRIL 11, 2015
APRIL 25, 2015
MAY 2, 2015
Albany Albany Municipal Auditorium
Marietta Marietta Square
Columbus Golden Park
Atlanta Piedmont Park
Savannah Daffin Park
Athens Oconee Veterans Park
Macon GEICO Corporate Campus
Augusta
Rome
Lake Olmstead
Berry College
BE INSPIRED. GET CONNECTED. WALK MS. Thank You To Our Walk MS National Sponsors:
TOLL FREE NUMBER 1 800 344 4867
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BIKE MS 1. Dan Yuhaschek $19,031 2. Cherise Mlott $17,905 3. William Barney $15,954 4. Scott Stafford $11,910 5. Richard Spencer $11,400 6. Kevin Fitzpatrick $10,213 7. Rosetta Dillard $9,350 8. Bob Lepping $9,350 9. Daniel Shim $8,573 10. David Cohen $7,515 11. Terri Latimer $7,284 12. Jeffrey Lund $6,800 13. Francisco Izurieta $6,046 14. Ryan Rodriguez $5,373 15. David Small $5,355 16. Bill Holley $5,255 17. William Plough $5,120 18. Frank Bell $5,000 19. Alex Holloway $4,883 20. Harald Walter $4,860 21. Glenn Mason $4,200 22. Allan Wendt $3,965 23. Barton Mitchell $3,785 24. Jack Basham $3,750 25. Jeanne Slagel $3,710 26. Michael La Kier $3,694 27. Wight Mixon $3,650 28. Tristen Anderson $3,642 29. Dan Jones $3,480 30. Eric Williams $3,450 31. Kinney Bacon $3,320 32. Steve Webb $3,288 33. Catherine LeMay $3,255 34. Paul Barrie $3,120 24
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2015
35. Bobbi Noland $3,090 36. Diane Heller $3,085 37. Jim Moulton $3,080 38. Marilea Welhouse $3,076 39. Richard Griffiths $3,020 40. Rebecca Gaston $2,775 41. Guy Tucker $2,753 42. Kevin Kuntz $2,710 43. Vern Herr $2,698 44. David Shope $2,695 45. David Wilderman $2,655 46. Renee Spivy $2,620 47. Brian Martin $2,605 48. Dan White $2,605 49. Barry Nash $2,600 50. Tony Harrington $2,575 51. Zev Yanovich $2,551 52. Steve Morrow $2,520 53. Terri Wilson $2,465 54. Angela Black $2,386 55. Cliff Hagan $2,375 56. John Lawrence $2,350 57. Joe O’Rourke $2,335 58. Michael Jahl $2,330 59. John Strickland $2,310 60. Christiana Muntzel $2,285 61. Randy Hawley $2,220 62. Jack Lyons $2,190 63. Jerry Lipsky $2,190 64. David Furmanski $2,160 65. Julie Schendel $2,151 66. Sean Baxter $2,101
JOIN THE MOVEMENT: nationalMSsociety.org
Bike MS Top 100 Club
Based on 2014 Bike MS Totals as of Pledge Deadline October 31, 2014. 67. John Stamey $2,005 68. Steve Agnello $2,000 69. Philip Boedeker $2,000 70. Kyle Teasdale $1,960 71. Andy Weiss $1,921 72. Chris Boyle $1,920 73. Diane Michaels $1,915 74. Robert Meyring $1,905 75. Mackay Asbury $1,870 76. Jay Walters $1,859 77. Kenneth Linning $1,850 78. Chris Williams $1,850 79. Cynthia Curry $1,838 80. Dan Coats $1,825 81. Robert Moody $1,815 82. Peter Bade $1,785 83. Mark Davidson $1,780 84. Sandra McNamee $1,736 85. Randal Garner $1,730 86. William Hawkins $1,725 87. Don Chapman $1,710 88. Ralph Gallagher $1,710 89. Brent Mlott $1,700 90. Michael Purdo $1,695 91. David Kaiser $1,681 92. Douglas McNamee $1,670 93. Christina Story $1,668 94. Ed Story $1,666 95. Janice K. Story $1,666 96. Alan Voss $1,665 97. Lisa Montbellier $1,640 98. Andrew Goldberg $1,630 99. Renee Torina $1,610 100. Bob Kendall
$1,605
BIKE MS: ATLANTA RIDE » SEPTEMBER 19-20, 2015 » 2 DAYS » MULTIPLE ROUTES
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The National MS Society telelearning program for people with multiple sclerosis and their families aims to provide information and guidance on current matters essential to living one’s best life with MS. Each free telelearning features topic-area expert(s) by phone with online presentations and Q&A session.
MS Research –Your Questions Answered
Sex Ed for Grownups – Intimacy in MS
MS and Employment
Gender Differences in MS
Managing MS Bowel & Bladder Symptoms
Preparing for MS Doctor Visits
January 20 & 22, 2015
February 12 & 26, March 12 & 26, 2015
March 17 & 19, 2015
May 19 & 21, 2015
July 21 & 23, 2015
September 15 & 17, 2015
Learn more and reserve your spot at 26
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nationalMSsociety.org/telelearning or call 1-800-344-4867 JOIN THE MOVEMENT: nationalMSsociety.org
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 Location: 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: Claire Clements (404) 351-0205 {ext. 123} Location: MS Center of Atlanta 3200 Downwood Circle NW, Suite 550 Atlanta, GA 30327 Level C conference room When do we meet? Meets the 4th Tuesday of every month from 6:15pm - 8:00pm (No meetings in November and December) Decatur Self-Help Group Contact Info: O.J. (770) 256-2516 Email: ojf2@yahoo.com Location: Green Forest Community Baptist Church 3250 Rainbow Road Decatur, GA 30034 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 M. (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 Perimeter – Atlanta Area: “Dine and Discuss: For Partners and Spouses” (This is a “Well Spouse” 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 Location: 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 Location: 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 Albany-African American Self-Help Group Contact Info: Colette (229) 395-4150 Location: Chosen to Conquer, Inc. , 1120 W. Broad Ave., 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 Location: Athens Neurological Associates 1086A Baxter Street Athens, GA 30606 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 TOLL FREE NUMBER 1 800 344 4867
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SELF-HELP GROUPS GEORGIA Augusta MS Self-Help Group Contact Info: Erin (706) 721-1411 Location: 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 Location: IHOP, 640 E. Main Street, Cartersville, GA 30121 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 Location: Mitchell County Hospital-Community Room, 90 E. 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 Location: Columbus Regional Hospital 707 Center Street Columbus, GA 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 Location: Northside Forsyth Hospital 1400 Doctors Bldg. Cumming, GA When do we meet? Meets the 1st Saturday of every month from 10:00am - 12:00pm Douglasville Self-Help Group Contact Info: Stephanie (770) 577-0408 28 || JOIN JOINTHE THEMOVEMENT: MOVEMENT:nationalMSsociety.org nationalMSsociety.org
Location: First Presbyterian Church Parlor Room Douglasville, GA When do we meet? Meets the 3rd Thursday of every month from 7:00pm - 8:30pm Peachtree City/ Fayetteville: “Let’s Lunch: MS Group for Working Professionals” Contact Info: Bill Clements (770) 631-4194 Email: bclements59@att.net Lynn (612)-655-9901 Email: lynn.meloche@gmail.com Location: Piedmont Fayette Hospital 1279 Hwy 54 West Fayetteville, Ga. 30214 Conference Room D 3rd Flr. ( Westside Bldg entrance) When do we meet? Meets the last Saturday of the month from 11:00am - 1:00pm Thomaston “T.A.M.S. Self-Help Group” Contact Info: Sherry (706) 472-3273 or (706) 975-9762 Location: 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 Location: Plaza Restaurant - Thomasville, GA 217 S. Broad Street Thomasville, GA When do we meet? Meets the 3rd Tuesday of every month from 6:00pm - 8:00pm Valdosta MS Self Help Group Contact Info: Barbara (229) 247-7792 Smith Northview Hospital 4280 Location: 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
SELF-HELP GROUPS GEORGIA Vidalia Self-Help Group “Looking Good Self-Help Group” Contact Info: Paula (912) 538-0142 Email: nonerves@bellsouth.net Location: 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 Waleska Self Help Group Contact Info: Jennifer Email: jjaress1@gmail.com Location: 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 Warner Robins “Middle GA Self-Help Group” Contact Info: Michelle (478) 335-4675 Email: msmidga@yahoo.com Location: Houston Medical Center, 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 Location: 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 SAVANNAH BASED SELF-HELP GROUPS Pooler Self-Help Group “Pooler’s Positive Movers and Shakers: MS Share & Support Group” Contact Info: Andraya: (912) 658-9629 or PoolersPositiveMS@gmail.com Savannah Self-Help Group –“PRYME2” Contact Info: Virginia (912) 355-5832 Email: vmorriso@bellsouth.net Location: St. Joseph Hospital 5353 Reynolds Street Savannah, GA For more information, contact Virginia When do we meet? Meets the 2nd Tuesday of each month at 6:00pm Please call Virginia to confirm room location and meeting dates. TELEPHONE BASED SELF-HELP GROUP 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 8am-8pm. 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
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