Written on 8/10/22
The first gathering of The Transverse Myelitis Association (TMA) occurred in 1997. A very small group of us attended a rare disease program sponsored by NORD (the National Organization for Rare Disorders) and the first physician on our medical advisory board, Dr. Charles Levy. It was the first time Pauline and I met the other officers of our Association. The TMA held its own education program in Seattle in 1999. All who participated experienced the power of coming together as a rare disease community, including Dr. Douglas A. Kerr, who shortly thereafter announced his specialization in transverse myelitis. He then established the first TM Center at Johns Hopkins along with Dr. Carlos Pardo and Dr. David Irani.
Through these gatherings and from speaking to hundreds of people on the telephone in our kitchen, Pauline and I came to recognize that families go through a unique experience when a child is diagnosed with transverse myelitis. We held our first family program in Columbus in 2002, which later evolved into our first family camps at Victory Junction and then at the Center for Courageous Kids.
Over many years, I’ve watched the beginnings of the most significant friendships. When you have a rare disease that no one around you has ever heard of, there is something pretty special about a bond with people who understand without having to say a word. I’ve watched this happen between adults and children alike. Some of these children are now adults who have their own children, and those friendships continue.
The value of our gatherings for the community are immeasurable, including our medical community. We learn so much from our medical professionals and they also learn from us. Being able to be with a patient community outside of their clinics offers them a perspective on people that they would not have without these experiences. I’ve observed these relationships at our education symposia and at our quality-of-life family camps.
People with ADEM, NMOSD, ON, and TM have always attended Transverse Myelitis Association programs. People with AFM and MOGAD also likely attended, and we just didn’t know it. We recognized the expanse of our umbrella and the connection between all these disorders when we changed our name to the Siegel Rare Neuroimmune Association.
The whole COVID thing has been a nightmare. For some, it has been the most devastating nightmare. As the people in our community have such complicated medical issues, we have been very cautious about exposing anyone to any kind of health risk. In addition to providing the best information for our community about the pandemic and about the best public health practices, including vaccinations, the SRNA has moved all our programs and events into the virtual universe. We’ve done our best to provide the same programs without risking exposure to a highly transmissible virus.
From my perch in the peanut gallery, the virus seems to continue to spread and cause illness. There are fewer deaths because medical science has developed some highly effective vaccinations and acute treatments. For so many societal reasons, not the least of which are driven by our economy, we’re going through the process of ‘returning to normal.’ As a result, I’m watching a lot more of my family and friends getting COVID and getting sick. They are all vaccinated, and when appropriate, boosted. In this environment and with consultation from our physicians on the SRNA board, we decided to re-introduce gathering in person.
We just completed our first Family Camp gathering in three years at the Center for Courageous Kids. We strictly followed protocols defined by our physicians, along with the standard practices at camp. We required that everyone coming into camp be vaccinated (age appropriate) and tested, including one day in the middle of camp. As with all our experiences, it did not go without hiccups. One of our families had a member test positive the day before camp and one family was sent home from the parking lot. Both cases were sad beyond words, but there were no complaints because everyone realizes that our children don’t need any more health issues. Two of the SRNA staff people were also sent home, which left me as the sole SRNA member at camp (yikes).
We were a smaller group, but you wouldn’t have known it from the joy and enthusiasm experienced by all the families during the week. Everyone had such a great time. Fishing, boating, bowling, arts and crafts, music, golf, archery, wood shop, movies, horseback riding, swimming, games, a carnival and all the time the children spent together, and all the connections being made between families. It was glorious. Messy games was fantastic and with the help of the Scottsville Fire Department, the cleaning process was just as amazing! I have more than 2,000 photographs from the week to document a monumentally spectacular week.
It was the last week of summer camp for CCK following a long and complicated summer for the volunteers at camp, most of whom were college students. You wouldn’t have known that they had been at camp all summer. They gave our children so much energy, love, care and fun during the week. Thank you so much CCK for a great week.
The education program we put on at camp was wonderful for the families. We were joined by Dr. Sarah Hopkins (Children’s Hospital of Philadelphia), Dr. Cynthia Wang (UTSW), Janet Dean (Kennedy Krieger), along with two Neuroimmunology Fellows who are working with Dr. Carlos Pardo at Johns Hopkins: Dr. Maria Reyes and Dr. Paula Barreras. They were available to the families throughout the week and there were many important exchanges of information. The physicians cannot dispense medical advice at camp, but we know that families become better advocates for their child’s medical care from the information they receive from our medical professionals. These medical professionals are the busiest people I know. They come to camp for the week, and engage with the families all day long, in addition to the formal education program. They leave their families, their clinical practices, their research, their teaching to be with us at camp. Everyone at the SRNA is beyond grateful for what they do for us and for our families. Thank you!
Hopefully, next year we will be able to accommodate more families and the pandemic will be in a much better place. If you haven’t been to camp, please look into attending; it is a transformative experience. If you have been to camp, please apply; we would love to see you again!
Being at camp is a bittersweet experience for me. I can picture Pauline on her scooter with Kazu by her side. I also made a visit to the tree planted for Gabby Inscho in a small grove next to the horse stable. Gabby was one of the children who regularly attended camp with her family. She died a few years ago. I thought a lot about Gabby, Pauline and Kazu during camp. Life is indeed hard. Their memories should be a blessing.
For the first time since the pandemic, we are going to be holding our education symposium in person in Los Angeles. This is an educational event for those with acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM), as well as their families, care partners, and medical professionals. Those who attend can choose either in-person, online, or a combination. You can sign up for an online event pre-RNDS on September 9, 2022 to connect with other attendees. Learn more here.
I’ll be attending the symposium in Los Angeles. I hope to see you there!
Please take care of yourselves and each other.