Announcing the 2019 Rare Neuro-Immune Disorders Symposium!

Since our very beginnings in 1994, the Transverse Myelitis Association has made it our priority to increase education and understanding of rare neuro-immune disorders. Our first symposium took place in August 1999 in Seattle, Washington. It was the first gathering of clinicians, scientists, and people diagnosed with a rare neuro-immune disorder to discuss these disorders and share information. The TMA’s symposium has become a regular event, occurring every other year, that brings our community together and fosters the spread of the most up-to-date information about these disorders. It also allows our community to share stories and build connections.

The TMA is excited to announce that our 2019 Rare Neuro-Immune Disorders Symposium (RNDS) will take place from September 19-21 in Columbus, OH. Attendees will meet at the Crowne Plaza in downtown Columbus to learn from experts about ADEM, AFM, MOG-Ab disease, NMOSD, ON, and TM. Presentations will include disorder-specific overviews, symptom management strategies, research updates, and more. Individuals who are diagnosed with a rare neuro-immune disorder will also be given the opportunity to meet and participate in community-building and support for one another. The symposium also offers attendees the opportunity to meet the medical experts in the field of rare neuro-immune disorders and to ask questions related to their disorder.

We encourage all our members, their family members, and medical professionals interested in learning about these disorders to attend. You can register for the 2019 RNDS here. If you have any questions, please email us at info@myelitis.org. We can’t wait to see you in Columbus!

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Alone Together

By Maria Cerio

Opportunities to meet someone to whom I can relate are few and far between. However, on Thursday, February 28, 2019, I found myself in a room of people like me. I was surrounded by people who know what it feels like to have your world rocked by a diagnosis of a rare disease.

Two weeks ago, I attended the Rare Disease Week events on Capitol Hill in Washington, DC. Programming kicked off with a screening of the documentary, My Turn. The film followed professional hockey player Scott Matzka’s journey with amyotrophic lateral sclerosis (ALS). Later in the week, I went to the young adults meetup and an art reception where all featured pieces were created by individuals diagnosed with a rare disease. The week culminated in Rare Disease Day at the National Institutes of Health, which consisted of panels, posters exhibits, a multimedia art exhibit, and networking.

There was no small talk here. The event attendees included a mix of patients, physicians, supportive family members and friends, students, and those simply trying to understand the life we live. With each introduction, I could sense a mutual hope of wanting the other to share the same diagnosis. For many, this is the one time a year they meet anyone with a rare disease and possibly even their own.

Looking around the room, it was clear that rare disease knows no race, sex, gender, size, or age. There were those whose disease is invisible, and others whose illness manifests itself in various ways, including disability – people from all walks and rolls of life. For once, I was in a space where the minority was the majority. In a room of individuals, many of whom experience chronic fatigue, the energy was palpable. It really is all one great paradox.

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Show Your Rare: 10+1 Fundraising Ideas to Honor Rare Disease Day

Today is Rare Disease Day! How will you #ShowYourRare in solidarity with rare disease patients all over the world?

We’ve put together 10+1 ways to get involved and support the TMA’s 25th Anniversary this year. Check them out and get involved today!

Organize a 25-year Anniversary Walk-Run-N-Roll in your area

In 2018, there were five Walk-Run-N-Roll events organized by our members. This year we’d like to double that number. These events are a great way to raise awareness and funds, and to meet others. Last year, an average of 100 people registered for a Walk-Run-N-Roll. This year, we have our special 25-year branding ready to be showcased at your very own Walk-Run-N-Roll!

Host a restaurant fundraiser

As Barbara mentions in her blog post, hosting a restaurant fundraiser is a simpler way to get involved…and you don’t have to know someone who owns a restaurant. Groupraise is a great site that allows you to search by zip code for restaurants in your area that will give a percentage of sales to the TMA.

Ask a local business to donate a percentage of sales to the TMA

Speaking of local businesses…you don’t have to use a restaurant. Ask your yoga teacher, dry cleaner, or favorite retail shop to donate a portion of their sales on a certain day. Our friends at The Candle Lab in Pittsburgh, PA donated nearly $1000 last May as part of our Candles for a Cause event.

Organize a bake sale and a lemonade stand

From things that smell good to things that taste good: set up a bake sale at your work, church, or school. People are going to need a drink to wash down those delicious cookies. Do you have kids? Let them get involved and do an old-fashioned lemonade stand.

Set up a Casual Friday at work

No one likes wearing work clothes. Be the best friend of all your co-workers and plan a Casual Friday fundraiser. Each person who donates gets to dress down. TGIF indeed!

Create an online fundraiser

Two things that everyone has: Facebook and a birthday. Combine them and ask your friends to donate to the TMA in lieu of buying you a gift. These fundraisers are easy to do and make a big difference! Not a fan of Facebook? Or birthdays? Not to worry! You can always create a fundraiser through our website and share it with family and friends. Just as easy!

Get a pair

Donate $25 or more and we will give you a pair of the warmest, coolest, and most caring socks in town. Get your special pair of #caresocks now! This will not only make your feet look good, but also spread awareness about rare neuro-immune disorders!

Become a monthly supporter

Recognize this special 25-year anniversary of the TMA by making a commitment to make a monthly donation of $25 each month during the year. If you can afford $250 a month, that would get us even closer to helping us achieve our/your important goals. You will, of course, get a pair of #caresocks as a thank you. Become a monthly supporter today!

Share your story

Want to raise awareness or share positivity? Write your local newspaper’s health reporter and tell them your story. Or, become a TMA Hope Ambassador and help share a message of encouragement to our community. Submit your story and raise awareness!

Write or call your politicians

Take it a step further and write a local politician. Do you want to see better funding for healthcare? Is there a prescription drug bill that you are hoping will pass? Write or call your elected officials and tell them your story. And make sure to let us know about it!

Start an Awareness Day

Go a step further and get a day in honor of your diagnosis. Our Georgia Support Group Leader, Kim Harrison, is participating in her fourth Rare Disease Day in Atlanta. She’s also worked with the legislature to get February 15 to be Georgia TM Awareness Day.

As always, if you have other great ideas, we’d love to hear them. Please contact Jeremy Bennett at jbennett@myelitis.org for more information and tell him how you plan to get involved. He’ll even send you cool 25-year TMA materials to use.

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Eating Out for a Good Cause

By Barbara Sattler

Barbara Sattler is on the Board of The Transverse Myelitis Association. While a city court magistrate in Tucson, Arizona, Barbara contracted transverse myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement, she has written three novels and has committed all her publications’ proceeds to the TMA. Barbara’s books are available for purchase on Amazon.com.  Barbara also has a blog.

Many of us think of fundraising as fancy dinners, silent auctions, golf tournaments and, of course, the walk-run-n-rolls. Those events are fabulous and generate lots of money. They also take lots of planning and time. For many of us, the thought of putting on an event like that is daunting.  For some of us, getting out of bed in the morning is daunting.

Recently, I had a much simpler idea that can be done by one person, although Julie Barry, a TMA member, and I did it together. My son Ben (and his partner) recently opened The Drunken Chicken, a restaurant whose specialty is chicken and waffles, and craft beers, but also serves a variety of chicken sandwiches, burgers, ice cream and waffles, mac and cheese, and funky appetizers.

Ben was willing to let us do a fundraiser there. Between 4 and 8 pm one evening, 25% of all sales were donated to the TMA. We also set up a table and gave anyone who came in a TMA bracelet and a brochure about the TMA. As one of my friends said, “Great idea, eat for charity.”

Julie and I publicized the fundraiser on Facebook and with individual invites to friends, book club members, and family. Facebook gave us the option of a donate button which allows people to donate immediately on the Facebook page (at no cost to the TMA or the Facebook user). Folks who couldn’t show up that evening sent donations through Facebook, by mail or in person.

This is an easy way to raise money. Little preparation. Lots of fun. Our family and friends attended, plus people who just came to eat and wound up learning about the TMA. Some gave more.

I was lucky to have a son in the restaurant business.  You can do an event like this with other businesses besides restaurants, such as a hair salon or sports business. If the items are higher end, you might consider a smaller percentage given to TMA. All you need is one person in business who wants to help.

As a reminder, if you buy from Amazon, sign up for Amazon Smile. It costs you nothing, but a small percentage of whatever you spend goes to the organization you specify which is, of course, the TMA.

Big events and gifts are terrific, but as many politicians have found out, small gifts add up.

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The View Through My Camera: 2018 Illinois Walk-Run-N-Roll for the TMA

By Bruce Mondschain
BLM Fineart Portraits

I believe that pictures tell the story of our lives: the moments of elation and those of despondence, those of great achievement and those that set us back. The moments we wish to keep forever because they show the feelings that cannot be uttered by our mouths. They capture the times that we wish to remember forever, some punctuated with salty tears, others with smiles of recollection, of times less complicated. Photographs capture the moments that remind us that we seldom walk the narrow bridge of life alone. Most often we cross that bridge with those we love and who love us. Photos are proof of that journey.  So, four years ago, when my dear friend and former colleague, Nancy Hanna Dove, asked if I would be interested in photographing the Illinois TMA Walk-Run-N-Roll, my reply was an enthusiastic, “For Sure!”

Having now been privileged to photograph four such events, I believe in the power of photographs with even greater conviction. You have taught me so much. And, for those insights, I will be forever grateful and in awe of the strength, promise and compassion that I have witnessed.

The TMA Walk-Run-N-Roll taught me that TM and related neuro-immune disorders do not discriminate. The participants in the event represent a blend of all ages, ethnicities, races, forms of mobility, levels of affluence and life situations. The event creates an arena for veterans of TM, as well as those who were only recently diagnosed. It is a place where a common language is spoken. It is the language of neuro-immune diseases accompanied by the language of hope.

Looking through my camera, I was overwhelmed by the welcomes I witnessed. Welcomes   that were instantly visible in the hugs, words of enthusiasm, tears of shared loss and the overwhelming feeling of comfort that accompanies being with others whose hopes, dreams and fears mirror your own. There is no room for pretense or haughtiness. Life is far too short and precious for those. The camera tells the truth!

I saw a sense of hope that was, for me, overwhelming. It showed in the eyes that searched other eyes in conversation. It showed in the words of a 16-year-old athlete who now speaks of her dreams of athletic achievement from her wheelchair. Her service dog sat quietly and attentively next to her. It showed in the memorials for those who joined us in prior years but who lost their noble battles with this mysterious disease. It showed in the mother who talked about the loss of her precious daughter and the prayer of comfort they said together each day. I saw it in the wife sharing her story of her husband’s fight to the end. Her pain and anguish were raw. Her story was a true love story. My camera recorded it in the brother who talked about the fact that he thinks of his departed sister each day. About her smile, her stamina, the lifelong gifts she gave to her family members. Who says big boys don’t cry?

The event is a day when it is okay to be vulnerable. I watched through my lens as a mother spoke about the pain of her daughter losing her battle. She told her story punctuated with gasps for breath, with tears streaming down her face, with a sense of profound appreciation for what family and friends have done to help her deal with her unthinkable loss. At a point when it seemed she could no longer finish her remarks, a strong young man who had been watching her intently made his way to the stage to put his arms around the woman speaking, his mother. He held her and reminded me once more that we needn’t walk the narrow bridge alone.

But, all that said, my tear-filled eyes saw something I never would have anticipated. Unbridled hope! That is what this incredible event is about. Hope. That we can be with others like ourselves. That we can be authentic in our pain and elation. That the TMA is making a difference every day in educating doctors, improving diagnostic accuracy and sharing new treatment and clinical study findings. That we know more today than we did yesterday and that tomorrow, we will know even more. That the TM community will stand together in victories and in moments of loss. I cannot think of a moment at any of the TMA events I have photographed that was not about hope. It was there in the enthusiasm at the beginning of the Walk-Run-N-Roll where youthful patients held the event banner, and in the sense of accomplishment as people crossed the finish line and posed for a photo. Hope was there as I took photos of people reading the biographies that were strung around the pavilion. Biographies of TM patients. Epic stories of bravery, commitment and accomplishment. And hope was present in the multitude of excited requests from people wanting their picture taken with their “TMA friends and family”.

And, hope was there as people gathered together to take a group photograph of all those at the event. Before I took that final picture of the day, I stood atop the ladder, looking out at the hundreds of mothers, fathers, husband and wives, sisters, brothers, children, grandparents, friends and neighbors. The love, camaraderie and feelings of hope and spirt were overwhelming. I struggled to steady and focus my quivering camera, took the picture and said a silent prayer.

From the deepest part of my heart, I thank you for letting me be a part of the journey across that narrow bridge. Here is to next year.

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The 2018 Central Ohio Walk-Run-N-Roll

This past Sunday, September 23rd, the TMA held a Walk-Run-N-Roll in Dublin, OH. The air was crisp, and the sun shone over Coffman Park as families and friends arrived for the event. Due to the generous work of volunteers, participants were greeted with sandwiches, coffee, and homemade cupcakes! Kids were treated to face-painting by a talented artist. Each participant received a Walk-Run-N-Roll t-shirt to commemorate the event.

As the last of the attendees arrived, everyone gathered in the pavilion to listen to Sandy Siegel speak. As the president of the TMA, Sandy spoke about his motivation for founding this organization: his wife, Pauline, who was diagnosed with transverse myelitis. Sandy and Pauline worked tirelessly for over 20 years to build the organization to what it is today. Sandy explained that even after a year since Pauline’s passing, he continues to dedicate his time and energy to the efforts of the TMA. He does this because he cares about the TMA community and is hopeful that research will improve the future for those with rare neuro-immune disorders.

After Sandy’s inspiring speech, the entire group gathered to take a photo. We all squeezed in tight so that all 70+ participants could be seen. Then, it was time to walk, run, and roll around the park! All the children were encouraged to lead the pack in the ceremonial trek, and they did so with bright, smiling faces. Their family members and friends followed in a harmonious movement that signified the strength of our community when we come together. Once finished, the attendees were encouraged to mingle with one another and share their stories. By meeting with one another, we spread understanding and support for everyone who has been diagnosed with a rare neuro-immune disorder.

We are thankful for all participants who came to show their support and to help us raise over $16,000 for research and education of rare neuro-immune disorders. We are grateful that families came from all over Ohio to join in this event. There is something special about having our community come together and meet others with their same diagnosis, many of whom have never met anyone else with their same disorder. We had a wonderful time at this Walk-Run-N-Roll and can’t wait for next year!

If you are interested in starting a Walk-Run-N-Roll or other fundraising event in your city, please contact the Community Partnerships Manager, Jeremy Bennett, at jbennett@myelitis.org.

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Transverse Myelitis Network Gathering at Spinal Life Australia

By Jeanette Kretschmann

Spinal Life Australia

Dr. Cynthia Wang was our guest speaker at our annual event and joined us via video link from Dallas, Texas to present an update to our Transverse Myelitis Network members across Australia and New Zealand.

Dr. Wang is currently a James T. Lubin fellow under the mentorship of Dr. Benjamin Greenberg at the University of Texas Southwestern and Children’s Health.

Dr. Wang spoke on:

1. Learning about the disease – What do we now know? An overview of Transverse Myelitis, CAPTURE study, Acute Flaccid Myelitis, MOG antibody syndrome.

2. Finding treatments for the disease – What can we now do? NMOSD drugs, Remyelinating drugs, Remyelinating stem cells.

3. The Transverse Myelitis Association: Eclipse Fund, Family Camp.

Sixteen members and partners attended in-person at our Brisbane office along with five members joining us via their home computers. Dr. Wang explained the nervous system could be quite complicated and gave us an analogy about the spine being a highway connecting the brain to the muscles that control the body and the nerves that produce sensations.

A question and answer session brought some interesting questions from both the in-person audience and the online participants.

We thank Dr. Wang for graciously giving up her Sunday evening to talk to us. Special thanks also go to Jim Lubin whose expertise with linking us all together is fantastic, along with many thanks to The TMA for making this all possible. We received wonderful feedback from people around Australia and New Zealand who shared the day with us. For anyone interested in Dr. Wang’s recording of the day, it can be found here: https://tma.ong/2JztLGG

Lunch and networking were enjoyed by all. Three new members joined us for the first time and were welcomed by long-standing members who attend every year.

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A Day of Awareness: The 2018 Northeast Ohio Walk-Run-N-Roll

The morning of April 29th, 2018 was sunny and clear, but a strong wind was wreaking havoc on the picnic area in Canton, OH where the TMA’s Walk-Run-N-Roll was to take place that afternoon. As paper plates and brochures flew off the tables, the TMA’s Community Partnerships Manager Jeremy Bennett hopped in his car to purchase tape and thumbtacks to hold down loose materials. Despite this chaotic start, many enthusiastic volunteers stepped in to help, and the event began without a hitch.

As participants arrived at the venue, they were greeted with the smell of delicious Greek food provided by Papa Gyros Greek Grill and pizza provided by Antony’s Pizza. Each attendee was offered a t-shirt and was able to peruse prize baskets to bid upon. As more adults and families arrived, the atmosphere was charged with energy and purpose; everyone was united in the mission to bring awareness to rare neuro-immune disorders and to raise funds to support the goals of the TMA.

Before it was time to walk, run, and roll around the park, Jeremy gave an enlightening speech on the research, education, and support provided by the TMA to those in our community. He gave praise to Heidi Bournelis, the organizer of the Walk, and her helpers, who were instrumental in the planning and success of the event. Heidi’s daughter, Alexis, was diagnosed with Acute Flaccid Myelitis when she was three years old, so this cause is close to her family’s heart. After Jeremy finished his speech, Alexis’s grandfather also spoke on the importance of raising awareness and funds in support of research and finding a cure for rare neuro-immune disorders.

Finally, it was time for everyone to line up and take off down the path outlined for the Walk-Run-N-Roll. A steady stream of over 100 participants wound its way around the park as talking and laughter filled the air. Although the atmosphere was light, serious conversations were also held. As I walked around the park, I spoke to Heidi about her family’s initial struggle to get a diagnosis for Alexis. Her doctors had first failed to diagnose her and suggested that her symptoms may be psychosomatic, i.e. she was faking her symptoms. However, after many tests and a month of waiting, Alexis was finally diagnosed. Her story served as a reminder that the TMA’s work to spread awareness is far from over.

As the Walk-Run-N-Roll came to a close, families and friends said goodbye to one another as volunteers cleaned up the picnic area. I was happy to see many new friendships form over the course of the event. I hope that all the participants walked away with a better knowledge of rare neuro-immune disorders and the impact they can make by supporting research and education efforts.

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Announcing the 2018 Regional Rare Neuro-Immune Disorders Symposium

The Transverse Myelitis Association, in partnership with Boston Children’s Hospital Center for Pain and The Brain, is excited to host the 2018 Regional Rare Neuro-Immune Disorders Symposium (RNDS) in Boston, MA this October! The RNDS is an education and advocacy conference for families, caregivers and individuals diagnosed with Acute Disseminated Encephalomyelitis (ADEM), MOG Antibody-Associated Disease, Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (including the subtype Acute Flaccid Myelitis).

The objectives of this event are:

  1. Gather an understanding of the knowledge to date on the biology and causes of rare neuro-immune disorders and how they relate to each other;
  2. Learn about the latest medical and surgical strategies to manage the symptoms associated with these chronic rare neuro-immune disorders.

This conference is a great opportunity for individuals diagnosed with a rare neuro-immune disorder and their families to learn about these disorders and how to better advocate for themselves. Medical experts will be available to answer questions and provide the most up-to-date information regarding these disorders. We also encourage any medical professionals wanting a better understanding of rare neuro-immune disorders to attend.

The 2018 Regional RNDS is a one-day event, which will take place on Saturday, October 27th, 2018 at The Joseph B. Martin Conference Center at Boston Children’s Hospital. For more information, and to register for the event, please visit https://myelitis.org/event/2018-rnds/.

About The Center for Pain and the Brain

The Center for Pain and the Brain is a multidisciplinary team comprised of leading neurologists, physician-scientists, psychologists, physicists and neurobiologists. Founded and directed by David Borsook MD PhD, the Center spans Harvard Medical School, Boston Children’s Hospital, Massachusetts General Hospital and McLean Hospital. Their research focuses on the discovery of novel pain pathways, developing novel high-throughput methods for evaluating analgesics, and incorporating results from animal research into human applications. They are one of the few Centers that evaluates both pediatric and adult patient groups. Conducting neuroimaging studies in both acute and chronic pain cohorts as well as experimental pain in healthy volunteers, these researchers seek to transform and improve the field of pain medicine.

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Arizona’s TMA Community Gets Inspired

By Kate Krietor

March 24th was a first for the Arizona TMA community. We gathered in Phoenix with our families and friends to show support for the TMA by sharing our stories and flexing our fundraising muscles. The energy and support generated by the 110 participants was gratifying to the volunteer organizers and set the stage for an ongoing Arizona TMA community.

We walked and rolled, we ate and we played, but most importantly, we gained strength by sharing our stories.


The youngest was a bouncy 3-year-old who got TM when she was just one. Maggie walked at 10 ½ months and had to relearn rolling over and crawling. Her Mom wrote, “Her fight and determination and strength were an inspiration to others, even from someone as young as Maggie.”  Our photographer tried hard to get shy Maggie to smile and it took balloons, wagons, and that blue sea of walkers to get her racing and laughing with her small friends. Her story was shared via a story sheet with her beaming smile.

Brittani, a high school senior and varsity athlete who juggles school, clubs and a job like many teens, was our keynote speaker. Brittani got TM at 11. She got out of bed one day and landed on the floor unable to walk.  Her comments were amazing. Doctors told her she wouldn’t play soccer again, but she was determined, and a year later was back on the field. She was captain of her Varsity team last year. “I’m resilient,” she said. “My Mom reminds me TM takes you two steps forward and one step back.”

Jason, a local TV reporter, knows how to tell a story. Imagine being on your honeymoon in Hawaii, sitting by a pool and slowly realizing you are becoming paralyzed. His wife came to the walk wearing a T-shirt that said, “TM ruined our honeymoon but not our lives.” Jason was able to share a bit of his (and our) story on his stations, Channels 3 and 5.

There were other stories too. Jordan came with his 22 supporters all wearing Team Jordan 24 shirts! His Mom shared his story of playing high school sports when TM upended his life. Jordan is adapting to a wheelchair after having overcome being on a ventilator. He is a fighter.

And then there is our story, the story of five ‘newbie’ event planners. The idea of putting on a walk was born on Oct 22, 2017 at the end of the TMA’s Rare Neuro Immune Disorders Symposium. We were, for the most part, just meeting each other for the first time and inspired to take hope back to Arizona – to create a community, tell our stories and raise awareness!  We inspired each other to organize the walk (in just 9 weeks!) and exceed our goals for community building, participation, funds raised and just plain old fun!

Arizona is a big, diverse state. The event was a coming-together facilitated by dedicated volunteers….thank you Gail, Kate, Julie, Barb and Deb, and to the strong support of the TMA staff for their willingness to “seed” the event and for their critical technical support. As a community we are resilient, we defy the odds and we make things happen. See you all next year in Tucson!

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