Announcing the 2019 SRNA 25th Anniversary Gala and Dinner Experience!

SRNA is gearing up for our 25th Anniversary Gala and Dinner Experience. Taking place on August 24th at the Kennedy Space Center Visitor Complex in Florida, the Gala will be an exciting evening for all who attend. Guests will enjoy a unique opportunity to celebrate the 50th Anniversary of the Apollo in the Saturn V room, while raising funds for rare neuroimmune disorders. 100% of the funds raised will go toward advancing research in the field of rare neuroimmune disorders.

This event will be the 4th Gala in SRNA’s history. Through the generous support and hard work of the event’s organizers, Jason and Tina Robbins, we have been able to raise over $80,000 in previous years. Jason and Tina’s daughter, Sarah, was diagnosed with Transverse Myelitis in 2011. Since that time, it became their mission “to find a cause and a cure for these devastating rare auto-immune neurological disorders.” Through this event, the Robbins family is helping us raise more funds for much-needed research for these rare disorders. We are thankful for Jason and Tina, who have dedicated their time to planning and hosting this successful event, and we are excited to share in this experience with all who attend.

The Gala will include raffles, Silent and Live auctions as well as musical entertainment. Guests will also have the chance to view real Apollo V artifacts and other amazing exhibits. We hope you will join us for an extraordinary evening in celebration of SRNA’s 25th Anniversary to help bring light and hope for the future. To learn more about the Gala and how to attend, please visit the event page here.

Small Town, Big Hearts

By Julie Lefelar

If you decide to take a trip through Southern Maryland down Route 210, also known as Indian Head Highway, you can’t help but realize that the further south you go, the more buildings, businesses and signs of the busy Washington DC Metropolitan area that you just came from seem to disappear. If you keep driving, you might just miss the town promised as the destination by its namesake road: Indian Head, Maryland. You would have expected traveling down that route that there would be an explosion of civilization upon your arrival. Instead, you will find a peaceful, unassuming main street, quaint neighborhoods, a beautiful community center called the Pavilion at the Village Green and the Naval Surface Warfare Center lining the Potomac River. It is in this center of town where, if you take a closer look, you will find unmatched generosity and community support. It is here where we experienced the big hearts of Indian Head in planning and holding our SRNA Walk-Run-N-Roll.

It all started when Cynthia Albright, a resident of Indian Head and a MOG Antibody-Associated disease patient of Dr. Michael Levy, ran into Curtis Smith, the Town Councilman. They started talking about her diagnosis of MOGAD and her involvement with the MOG Project at SRNA. He encouraged her to host a walk at the Village Green. As a co-founder of the MOG Project at SRNA, she contacted me and I was sold on the idea. We brought in Tanisha Willis, an NMOSD patient of Dr. Levy’s, who jumped at the chance to help.  Amy Ednie and Kristina Lefelar, Co-Founders of the MOG Project decided to make the commitment as well.  It wasn’t long before Indian Head Mayor Brandon Paulin got involved and the next thing we knew, the town of Indian Head had provided us with a beautiful venue at the Village Green and all the help we would need. Karen Williams, their event guru, pulled in volunteers and ideas for our event that would make it fun for all.

It didn’t stop with the town leaders. Cynthia was able to reach out to multiple businesses in the Indian Head area for support and with no second thought, they were all on board to support us. We got free services and donations for raffle items from many businesses interested in our cause and helping Cynthia. Dr. Levy once again demonstrated his generosity and commitment to the community by agreeing to speak at the event. Mayor Paulin and Councilman Smith stepped up to speak as well. It wasn’t long before we had a plan for a fun event which included inflatable carnival games, cotton candy, DJ Rockin’ Roger, face painting by Allison Ryan (a Disney face painting artist), an assortment of beautiful raffle and silent auction items like a hand-crocheted afghan by Cynthia’s husband Randy, a “MOGarita Basket”, a “Bark Basket” and two Mother’s Day baskets, among other items. We even planned on having MOG gear for sale, such as T-shirts designed by Allison Ryan and awareness ribbons. Members of the community and family members helped set up a bake sale, “MOGTail” drink station and concessions for the event. We did have a few hiccups along the way, but when an issue arose, Mayor Paulin scrambled to our rescue and, with the help of another local non-profit, the Indian Head Center for the Arts, all was well. Suddenly, we realized that this little town could make anything happen!

As we continued to plan, other Maryland businesses jumped in to help.  We were thankful to have had the support of our friends at Smoker’s Delight BBQ, Leverege (a rising technology company), Acker & Sons Plumbing, Gun Monkey’s, Firearms Training Incorporated, Blue Dyer Distillery, MoCo Founding Farmers, Target, JDaniels Psychotherapy Services, INC, the LaPlata Green Turtle, Chipotle, and White Plains Golf Course. We also had many other local businesses donate food, drinks and supplies, such as BJ’s, Costco, Giant, Safeway, Chick-Fil-A, Walmart and Texas Ribs & BBQ.  We can’t thank all of our sponsors enough for helping.  This event would not be possible without their support.  In addition, we had many volunteers who jumped in to make this a success and for that we are grateful.

On the day of the event, clouds loomed overhead, and we were afraid that our Walk would be rained out. We arrived early and diligently set up in preparation for the start of the event. As the time for the event arrived, suddenly the clouds parted and to our disbelief, the sun came out! What a miracle. People had a wonderful time dancing and playing games. When it was time for the speakers, Cynthia gave a heartfelt speech, telling her story and how supporting rare neuroimmune disorders is important. Mayor Paulin, Councilman Smith, and Dr. Levy all provided inspiring words.

Everyone had fun. Councilman Smith and Mayor Paulin gave life to the party. Everyone chipped in to help, whether to blow up balloons, help put up the welcome sign or excite the masses. Even the local high schools, Maurice J. McDonough, Loudoun County and Henry E. Lackey sent students eager and excited to volunteer.

While everyone had a great time, we saw the best zest for life from Team Victoria, a group of family and friends from New Jersey whose little girl Victoria had been diagnosed with AFM and is currently doing well. This family seemed to be celebrating her and at the same time showing their solidarity and commitment to keeping her and other children like her well.

When the event came to a close, clearly a success, we started packing up, satisfied that we had done our jobs. Just as the last box was packed in the car and the cleanup was finalized by the sound of a trunk closing, the rain started. And it really poured.

In retrospect, our hearts were full after this event. The incredible community support was overwhelming, and the town of Indian Head was the driving force for it all. We are thankful for this small town, who saw one of their own in need for a cure of a rare disease and decided to act, putting Indian Head on our map and in our hearts.

Tucson Walk-Run-N-Roll

By Barbara Sattler

“We need to have a walk in Tucson,” Julie says.

“You guys can do a walk,” Chitra says.

“No, no, no,” says my little voice.

Julie Barry and I met in 2009 and started a support group in Tucson, AZ. At times, we met every month and had 4 or 5 participants.

Times change. Some of our members moved and others weren’t able to devote time for a walk, so if there was a walk, Julie and I were the only two people in Tucson willing to plan it. To be fair, Julie was the only one willing. I’m retired, busy as I want to be, and as I grow older, I have less energy. Old age or TM, I can’t say for sure.

I had this horrible vision in my head of the walk being a complete flop – only a few people coming, spending more on planning than we took in. Because of the great weather, and caring Tucson community, it seems there are 3 to 4 walks or runs or bike events every weekend. AIDS, Multiple Sclerosis, Multiple Myeloma, Breast Cancer, Diabetes, Muscular Dystrophy, Parkinson’s disease, Alzheimer’s, and Melanoma to name a few. Nobody has ever heard of TM. Who would show up?

“We need to have a walk in Tucson. Phoenix had the first Arizona one last year and they’ll help.” Julie says.

“You guys can do a walk,” Chitra says.

“No, no, no,” says my little voice.

Julie and I met a couple times and talked about how, when, and where. She was enthusiastic and I pretended to be. Julie suggested the zoo. I love the Tucson zoo. It’s big enough to have lots of animals to see and small enough to get through it in about an hour and a half. It’s not full of bus traffic or extremely crowded. You can get a good view of the animals and the zoo is pro-conservation and involved in species survival programs.

We arranged to meet Meghan, a zoo employee who was assigned to help with our event and invited Gail Buch and Kate Krietor from Phoenix to join us. They planned the 2018 Phoenix Walk-Run-N-Roll, a tremendous success. Without them we never would have had a successful event.

The walk was planned for March 30, 2019 which turned out to be a beautiful spring day. In Tucson, it can be very hot, but it wasn’t. About 80 people had pre-registered from Tucson, Phoenix, Lake Havasu, Casa Grande, and Eager, Arizona; Modesto, California; and Chicago Illinois.

Julie, Gail, Kate, myself, and our friends and spouses met at 7:00 am at the zoo and got ready putting out food that had been donated, setting up a raffle table and t-shirt table, hanging up enlargements of SRNA members’ stories explaining how the various neuroimmune disorders SRNA supports impacted them. Every couple of minutes, we’d get an update that more people had shown up. (We believe the final count was 96.)

The event turned out to be a great success. We had inspiring speeches. Jordan, a young man with TM who was diagnosed incorrectly, and his mom, Kimberly, not only spoke about their situation but brought along about 30 Team Jordan folks. Craig, who had TM and was formerly a pilot, spoke. Ronnie, a mother of four, spoke about her journey with ADEM.

We took group pictures then had the official SRNA walk. The zoo turned out to be a great venue. After we completed our program, part of the ticket price allowed participants to remain at the zoo till closing.

We brought in $11,000 which was $10,500 more than I expected.

For me, one of the highlights was meeting Kelly from California who had TM for several years, but had never met anyone with TM before.

Julie and Chitra Krishnan, Executive Director of SRNA, were right. We could do a walk. Thanks again to Gail and Kate for their enthusiasm and hard work, Debbie Capen for SRNA pins, Jordan and Kimberly for speaking and Team Jordan for coming, and Jeremy Bennett, SRNA Community Partnerships Manager for all his help in planning and being part of the walk. Thanks to Julie for persuading me to do this, choosing the zoo, and making fabulous pumpkin bread.

If you have thoughts about doing a walk or other event, now is the time.

Barbara Sattler is on the Board of The Siegel Rare Neuroimmune 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 SRNA. Barbara’s books are available for purchase on Barbara also has a blog.

Announcing the 2019 Rare Neuroimmune Disorders Symposium!

Since our very beginnings in 1994, the Transverse Myelitis Association has made it our priority to increase education and understanding of rare neuroimmune 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 neuroimmune disorder to discuss these disorders and share information. SRNA’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.

SRNA is excited to announce that our 2019 Rare Neuroimmune 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, MOGAD, NMOSD, ON, and TM. Presentations will include disorder-specific overviews, symptom management strategies, research updates, and more. Individuals who are diagnosed with a rare neuroimmune 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 neuroimmune 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 [email protected]. We can’t wait to see you in Columbus!

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.

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 SRNA’s 25th Anniversary this year. Check them out and get involved today!

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!

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 SRNA.

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.

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.

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!

Two things that everyone has: Facebook and a birthday. Combine them and ask your friends to donate to SRNA 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!

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 neuroimmune disorders!

Recognize this special 25-year anniversary of SRNA 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!

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

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!

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 [email protected] for more information and tell him how you plan to get involved. He’ll even send you cool 25-year SRNA materials to use.

Eating Out for a Good Cause

By Barbara Sattler

Barbara Sattler is on the Board of The Siegel Rare Neuroimmune 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 SRNA. Barbara’s books are available for purchase on  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 SRNA 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 SRNA. We also set up a table and gave anyone who came in a SRNA bracelet and a brochure about SRNA. 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 SRNA 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 SRNA. 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 SRNA. 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, SRNA.

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

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

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 SRNA 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.

SRNA Walk-Run-N-Roll taught me that TM and related neuroimmune 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 neuroimmune 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 SRNA 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 SRNA 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 “SRNA 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.

The 2018 Central Ohio Walk-Run-N-Roll

This past Sunday, September 23rd, SRNA 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 SRNA, 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 SRNA. He does this because he cares about SRNA community and is hopeful that research will improve the future for those with rare neuroimmune 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 neuroimmune 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 neuroimmune 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 [email protected].

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 Siegel Rare Neuroimmune 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 SRNA 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:

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.