June 6 Declared Transverse Myelitis Awareness Day in Maryland

This week, Maryland’s Governor proclaimed June 6 as Transverse Myelitis Awareness Day. This is the second year that the State of Maryland will be celebrating the lives of patients, families and caregivers who are affected by transverse myelitis, neuromyelitis optica, acute disseminated encephalomyelitis and other rare neuro-immune diseases. For many people diagnosed with transverse myelitis, they are literally paralyzed by the virus from the neck down or the waist down, altering their lives forever. This disease and many other neuro-immune diseases are so rare that not even the medical community understands them. Awareness of these diseases is key to better diagnosis and improved outcomes.

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To further promote awareness, members of Transverse Myelitis Folks, a Facebook group managed by Kevin D. Weilacher, have been writing to their elected officials to designate a Transverse Myelitis Awareness Day. To date, our members have been successful in signing up a total of thirteen states. Our goal is to one day have a National Transverse Myelitis Awareness Day.

To continue the celebration in Maryland, a 5K Run and 1M Fun Walk and Roll will be held on October 4, 2015. The site of our second Walk-Run-N-Roll is Goucher College in Towson, MD. Registration will start at 8:00 am, and at 9:00 am our State Senator Katherine Klausmeier will sound the starting horn. Last year we raised over $26,000 and this year we hope to exceed that amount. If you are interested in reading more about this event, to donate or to join, follow the link https://www.crowdrise.com/2015-Maryland-Walk-Run-N-Roll.

In the meantime, there is momentum growing for the “Blue Streak Challenge”.   For the month of June, wear a streak of blue in your hair and tell people about transverse myelitis and other rare neuro-immune diseases. Join in the fun and post your picture on Facebook, along with all of the others. Whether you donate to the TMA, join the Walk-Run-N-Roll, or participate in the Blue Streak Challenge, please remember to wear your blue on June 6.

~ Laurie Zissimos

Announcing the 3rd Annual JHTMC Transverse Myelitis Symposium

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The 3rd Annual JHTMC Transverse Myelitis Symposium will be held on Saturday, June 20th at 9:00 am at the Arcade Conference Center, located at the Johns Hopkins Hospital (1800 Orleans Street, Zayed 2117, Baltimore, MD).

Patients and caregivers will have the opportunity to meet with practitioners and other patients in an effort to learn more about their disease, symptom management, patient advocacy, standard-of-care and ongoing investigations into new treatments. Research opportunities will also be available to those who are interested.

For more details and to register, please RSVP here.

Please join us for a day of education, research, and interaction with fellow TM patients… plus a little bit of fun!

Agenda

9:00 am-9:30 am
Registration & Breakfast

9:30 am-9:45 am
Maureen A. Mealy, RN, BSN
Opening Remarks

9:45 am-10:10 am
Carlos A. Pardo, MD
TM: Making the Diagnosis

10:15 am-10:40 am
Daniel Becker, MD
You have TM… Now What?

10:45 am-11:00 am
Break 

11:00 am-11:25 am
Charlene Gamaldo, MD
Sleep Issues in TM: What to Know

11:30 am-11:55 am
Mackenzie & Casey Springer
From the Perspective of a Mother & Patient

12:00 am-1:00 pm
Lunch; Patient Roundtable Discussions: pitfalls and frustrations of life with TM 

1:00 pm-1:25 pm
Adam Kaplin, MD, PhD
Treating Depression in TM

1:30 pm-1:55 pm
Kathleen Zackowski, PhD

2:00 pm-2:15 pm
Break

2:15 pm-2:40 pm
Scott Newsome, DO

2:45 pm-3:10 pm
Janet Dean, CRNP

3:15 pm-3:30 pm
Break 

3:30 pm-4:00 pm
Michael Levy, MD, PhD
TM Data-blitz

4:00 pm-5:o0 pm
Carlos A. Pardo, MD | Michael Levy, MD, PhD | Maureen A. Mealy, RN, BSN | Ana Arenivas, PhD, MPH | Daniel Becker, MD | Adam Kaplin, PhD
Panel Discussion; Tackling Pitfalls and Frustrations

 

Special thanks to financial supporters of the Symposium, the Bart McLean Neuroimmunology Research Fund

Endorsed by the Transverse Myelitis Association

I Run Crooked

It started as most things in my life do, in the yoga studio. I was in a yoga teacher-training program, and was spending a lot of time in the wood floored studio. One day, my right foot started dragging a little bit, swooshing slightly on the floor. It started getting worse, swooshing louder and louder, and then the muscle spasms started. The nerve pain, burning and tingling and electric. I lost the ability to taste almost all foods. The ability to hold my bladder, the inability to sit for longer than an hour. Temperature sensitivity in my right leg. And oh lord, the sciatica.

I also stopped sleeping. And eating (everything tasted like ash). I started crying. Freaking out. Called my general practitioner who referred me to a neurologist. Tests, exams, evaluations. Shrugged shoulders, suspected diagnoses, eye rolls, insurance fights. MRIs, a lot of them, Dalek techno over and over and over.

When the worst had past, a couple months later, I got an official diagnosis: idiopathic transverse myelitis. I go back for MRIs every year for the next 5 years, and am always on the lookout for symptoms, progression. They discovered that my osteroarthritis had gotten worse and I have several bulging discs in my spine. No new lesions, thank goodness.

My taste slowly came back, my sleeping improved. Most of the nerve pain is gone and only slight swooshing on the floor. Picking up the pieces from what you can’t fully explain to others. I am very lucky—one of my friends also had a TM attack. I remember her telling me about it a few years ago, not putting everything together in my mind until my hindsight was 20/20—she got it instantly. We are always recovering from it, every day.

Now, I am a contrary individual. The best way to get me to do something is to tell me that I shouldn’t do it—ask my parents or my husband or my friends. I just can’t help myself. So when the doctors said that running was probably not the best form of exercise for me, well, that just rankled. Not one to say no, I am running the Pittsburgh Half-Marathon on May 3, 2015. I have to, to prove that I can, and while I am at it I might as well raise money for the TMA and awareness for TM.

I run crooked, because that’s just how it is now. And I like to think I am running for all of our recoveries, for all our treatments, for all the explanations. A little presumptuous? Maybe. But it’ll keep me going.

And by the way, I did finish the teacher training program. A little crookedly.

Sam has set up a GoFundMe and a blog for the campaign. Show her some support and check out her efforts!

2014 Texas Walk Run-N-Roll

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A time of “firsts” always seems to bring excitement in our lives. As a mom, I remember how exciting it was to see my sons’ first smiles and steps; hear their first giggles and words. In 2014, local patients and caregivers began meeting monthly, which informally began our support group, to learn from each other and from some amazing speakers. On October 4, 2014, our DFW TM/NMO Support Group hosted the first TM/NMO Walk-Run-N-Roll held in Texas for the benefit of the Transverse Myelitis Association. Despite a few challenges as we planned the event, excitement abounded on the day of our Walk-Run-N-Roll. Our event was held at a beautiful, completely handicapped accessible park designed for children. We raised money (approx. $23,000.00) for this worthy cause and many new relationships and friendships were formed. There is no price tag to be placed on the feelings that come from meeting someone else fighting the same disease you do on a daily basis. To see the comfort of people meeting someone else that truly understands your struggle and to know that you are not alone with this disease is priceless. Bonds of new friendships are forming as well as an army of advocates rising up to benefit the others that will unfortunately follow in our footsteps until a cure is found.

I hope you enjoy the video of our event – 2014 TX Walk-Run-N-Roll. My special thanks to my amazing co-chair, Chris Hill, for the endless tasks he took on, including this great memento of the event, and lending so many hours, support, and determination to see this event come to fruition. Many thanks to all the folks that came out to help on the day of the event, patients, family members, friends, and most of all, our amazing extended family of support from Dr. Ben Greenberg and his staff at UTSW. How encouraging it was to have Dr. Greenberg stand in front of what is called “Miracle Field” at the park and listen to him share news of progress in the areas of better treatments, understanding of these disorders, and hope for our future. I think we all felt like we had experienced a miracle that day!

Hope you are able to go to a support group meeting this year to bond with others, learn, and help educate others about our diseases, and treatments. Exciting things are in store, thanks to the TMA and the magnificent work they do.

If you don’t have a support group near you and would like to see one come to your area, please communicate that with the TMA, and please consider starting one. We hope to see more groups coming together for our common cause.

Wishing you all a Happy & Healthy New Year!

~ Barbara Nichols | Texas Support Group Leader

 

 

 

Season’s Greetings!

On behalf of our board of directors, members of the medical council, staff and volunteers of the TMA, we wish you and your families much health and happiness as you celebrate these holidays. Please take a few minutes to view the video below and share it with your friends and families.

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Helping make a difference!

We (Kylie and Emily) wanted to raise awareness about transverse myelitis and raise money to help one day find a cure for this neurological disorder. So we decided to do this for our high school senior graduation project and so to speak kill two birds with one stone. We created T-shirts that we sold for $12 each. We raised $162.00 from selling the T-Shirts. We created the design on our own and choose bright, popular colors that would easily be noticed.

We then held a fundraiser at Rachael’s Cafe and Creperie located in downtown Lancaster, Pennsylvania. 20% of all the sales that day were donated to The Transverse Myelitis Association. We also set up a table at the front of the cafe where we displayed mini brochures and the shirts that we were selling. At Rachel’s we raised about $22,000.

Then we finally ended our project by holding another fundraiser at Tropical Smoothie in Lititz, Pennsylvania. It was on September 4th from 4-8 pm where 20% of the sales were donated to The Transverse Myelitis Association. At Tropical Smoothie we raised over $132.87. We stayed at Tropical Smoothie for the 4 hours and were available if people had questions about what we were doing and also had mini brochures available. We also received a $100.00 donation from DonovanConnective Marketing, which is an advertising business in Lititz, Pennsylvania.

In total from all of our fundraisers, shirts we sold, and money that was donated, we raised over $614.87. We hope that the amount we raised will help make a difference in finding a cure for transverse myelitis. We also hope that we will inspire people to continue to raise money for The Transverse Myelitis Association and also try to make a difference in people’s lives.

By Kylie Shaffer and Emily Donton

Videos of the 2nd Annual Regional Transverse Myelitis Clinical Care Symposium Available!

On behalf of the Johns Hopkins Transverse Myelitis Center, Dr. Carlos Pardo and Maureen Mealy would like to thank everyone for a successful 2nd Annual Regional Transverse Myelitis Clinical Care Symposium! On Saturday, June 21st, over 100 transverse myelitis, neuromyelitis optica, and other patients with rare myelopathic disorders, as well as their caregivers and family members, filled the auditorium at the Johns Hopkins Hospital in Baltimore, MD, to interact with other such individuals, many for the first time ever!

Participants came from as far as California, Utah, and even Australia to interact with our expert faculty from Johns Hopkins, Kennedy Krieger Institute, and International Neurorehabilitation Institute, who spoke with the crowd about the issues that most affect them on a day-to-day basis. Topics discussed included diagnosis of transverse myelitis, neuropsychiatric impact, gait dysfunction and innovative rehabilitation strategies, spasticity management, bowel & bladder management, developments in stem cell treatments, and management of neuromyelitis optica. The day included a combination of lectures and breakout roundtable sessions, with some question and answer time made available in a day packed with information!

The day could not have been the success that it was without the help of not only our expert lecturers, but also our volunteers from JHH & KKI. The symposium was also made possible through the generous financial support of an unrestricted educational grant provided by Alexion Pharmaceuticals and the Bart McLean Neuroimmunology Research Fund.

If you missed the event, you can view videos of the presentations by going to https://myelitis.org/portfolio-view/2014-regional-transverse-myelitis-clinical-care-symposium.

Johns Hopkins Neuromyelitis Optica Patient Day

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The Johns Hopkins Neuromyelitis Optica Patient Day will be held on Sunday, October 5th at 9:30 am at the Chevy Chase Conference Room, located at the Johns Hopkins Hospital (1800 Orleans Street, Zayed 2119, Baltimore, MD).

NMO patients and caregivers will have the opportunity to meet with practitioners and other patients in an effort to learn more about their disease, symptom management, patient advocacy, standard-of-care and ongoing investigations into new treatments. Research opportunities will also be available to those who are interested. You can view the agenda below for more details!

While the event is free to all, space is limited and availability is first come, first served. If you’re interested in attending the event, please RSVP via the following link in advance: https://www.regonline.com/jhunmopatientday, and no more than one additional guest per NMO patient may attend. We ask that you let us know if you need to cancel. Please note that the Orleans garage is conveniently situated across the street from the hospital between Wolfe & Broadway, and the Zayed pedestrian bridge on the 4th floor of the garage links to the Main Level of the hospital for safe and easy access. Food will be provided.

Please join the Johns Hopkins Neuromyelitis Optica Clinic team for a day of education, research, and interaction with fellow NMO patients… plus a little bit of fun!

 

 

NMO Patient Day Agenda

9:30 am-10:00 am
Registration & Breakfast

 

10:00 am-10:15 am
Michael Levy, MD, PhD
Welcome & Opening Remarks

 

10:15 am-10:35 am
Michael Levy, MD, PhD
Introduction to NMO

 

10:35 am-10:45 am
Q&A

 

10:45 am-11:05 am
Maureen A. Mealy, RN, BSN
Symptom Management in NMO

 

11:05 am-11:15 am
Q&A

 

11:15 am-11:30 am
Break

 

11:30 am-12:00 pm
Marcello Matiello, MD
Treatment in NMO

 

12:00 pm-12:15 pm
Q&A

 

 

12:15 pm-1:45 pm
Breakout Lunch Sessions

 

Neuropsychiatric Aspects of NMO
Adam Kaplin, MD, PhD

 

Critical Issues in Neurorehabilitation
Daniel Becker, MD | Kathleen Zackowski, PhD

 

Pain Management in NMO
Jatin Joshi, MD

 

Bowel and Bladder
Janet Dean, CRNP

 

Sexual Dysfunction
Karen Boyle, MD

 

 

 

1:45 pm-2:00 pm
Maureen A. Mealy, facilitator
Patient Advocacy

 

2:00 pm-3:00 pm
Michael Levy, facilitator
Clinical Trials Update

 

3:00 pm-3:30 pm
Talent show

 

3:30 pm
Michael Levy
Closing Remarks & Adjourn

www.nmoresearch.org

www.guthyjacksonfoundation.org

 

First Annual Golf Outing for The Transverse Myelitis Association

POWELL, Ohio – The Transverse Myelitis Association (www.myelitis.org) will be holding its First Annual Golf Outing at the Scioto Reserve Country Club in Columbus, Ohio on Monday, September 29, 2014. The purpose of the event is to promote awareness about rare neuro-immune diseases of the brain, optic nerve and spinal cord such as transverse myelitis and neuromyelitis optica, and to raise funds to support research and advocacy efforts for the many individuals and families who struggle with these disorders.

The golf outing recognizes The TMA’s 20 years of service to the community. “My wife, Pauline, was a healthy 35 year-old and was teaching kindergarten in the Worthington Schools when she got TM. She was totally paralyzed from the waist down in a matter of minutes. Pauline got TM in 1994 and, through her experience, we established The Transverse Myelitis Association. We don’t know what causes these rare neuro-immune diseases to occur and no cure has yet been found. Recovery, if any, is different for every case. Now, more than ever, it is time for us to heal the world for those people and their loved ones who suffer with these rare and devastating neuro-immune disorders, says Sandy Siegel, President of The Transverse Myelitis Association. These rare disorders affect individuals of all ages; approximately 25-30% of those affected are children. These diseases strike at any time without any warning. A person will experience a sudden acute inflammatory attack of the spinal cord, brain or optic nerve, with initial symptoms such as weakness, paralysis, blurry vision, bladder and bowel dysfunction and loss of sensation.   Although some patients will recover, many experience permanent, devastating disabilities including paralysis, quadriplegia, ventilator dependence, pain, depression and blindness.  

The event kicks off on Monday morning with a best ball scramble and will be followed by a dinner and silent auction, accompanied by a presentation from guest speaker Dr. Benjamin Greenberg, Director of the Transverse Myelitis and Neuromyelitis Optica Center at the University of Texas Southwestern. Dr. Greenberg will speak about the state of research on the rare neuro-immune disorders.

Major sponsors of the TMA golf outing include Aetna, The Narducci Family, OhioHealth, Boeing, Hanger Clinic, Fifth Third Bank, Kylene H. Fernandez, DDS, MS Mill Run Pediatric Dentistry, Monks Copy Shops, Giant Eagle, Starbucks and Tim Hortons. Many local businesses have also generously supplied items for our silent auction and donations.

To join this effort and help raise awareness and learn more about how you can support our cause, please visit https://myelitis.org/golf-outing.

About The Transverse Myelitis Association

The Transverse Myelitis Association (TMA) is a not-for-profit international foundation dedicated to the support of children, adolescents, and adults with a spectrum of rare neuro-immune disorders – Transverse Myelitis, Neuromyelitis Optica, Optic Neuritis and Acute Disseminated Encephalomyelitis. Membership of the TMA includes individuals with these rare disorders, their family members and caregivers, and the medical professionals who treat individuals with these disorders. The TMA currently has over 10,500 members from more than 80 different countries and has a large number of support groups across the United States and around the world. The TMA empowers families, clinicians and scientists through education and awareness programs and supports novel research and training of clinician-scientists focused on rare neuro-immune diseases. More information is available at http://myelitis.org.

For media inquiries or additional information:

Sandy Siegel, President
The Transverse Myelitis Association
1787 Sutter Parkway, Powell, OH 43065

Phone: 855-380-3330

Email: ssiegel@myelitis.org

Kids with TM Enjoy a Week of Outdoor Excitement in Crested Butte, Colorado

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The Adaptive Sports Center (ASC) is a non-profit organization working to enhance the quality of life of people with disabilities through outdoor adventure activities. Based in Crested Butte, Colorado, the ASC offers programs to improve participants’ confidence, health, independence and overall well-being.

In August, the Johns Hopkins Transverse Myelitis Center (JHTMC) teamed up with the International Neurorehabilitation Institute (INI) to bring together a small group of kids with TM on a weeklong adventure. With the coordination of the ASC they were able to make this big adventure a reality!

Dr. Daniel Becker (JHTMC/INI), his wife Sharen (INI) and I worked with ASC to put the trip together. And lucky us! We got to go along and experience all the fun right alongside the kids and parents!

It was a busy, wonderful week. The group went canoeing and kayaking on the scenic Lake Irwin, learned about horse care and the basics of horseback riding at a working ranch, and went rafting and kayaking on the white waters of the Gunnison River. The itinerary wrapped up with a full day of fun and teamwork at a ropes course that included a zip line and giant swing.

Colorado 3

Everyone fully participated in the week’s activities – even the newbies. The kids’ faces told the whole story as they conquered their trepidation and discovered their own inner strengths. It was great to see uncertainty melt away into joy, courage, camaraderie and laughter.

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After enjoying the natural wonders of the mountains, there was also time to explore the little town of Crested Butte, whose charms included some terrific and kind people, along with some pretty unbelievable homemade ice cream and French fries!  We definitely enjoyed replacing all the calories we burned from our activity.

JHTMC and INI can’t thank ASC enough for facilitating this high-adventure experience and for being a constant source of support throughout our time in Crested Butte. We hope to be back next year!

For more information on ASC, visit http://www.adaptivesports.org.

Maureen A. Mealy, RN, BSN, MSCN, Clinical Program Manager at the Johns Hopkins Transverse Myelitis Center and the Neuromyelitis Optica Clinic in Baltimore, MD