Rare Neuroimmune Support

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Having mentioned that our youngest daughter endured a transverse myelitis episode almost thirteen years ago, I would be remiss if I didn't post further regarding a wonderful organization, borne of a TM attack, that has grown into a more inclusive group to address the fears, questions, and needs of families dealing with rare neuroimmune events.

 

The original founder of the Transverse Myelitis Association, Sandy Siegel is now President of the Siegel Rare Neuroimmune Association.  Sandy's wife, Pauline, contracted TM in 1994 at age 35.  In 1995, Sandy founded the Transverse Myelitis Association and has worked tirelessly to promote the medical study and discovery of that condition and the other closely related neuroimmune afflictions, and to offer support and hope to the families of the afflicted.  In recognition of the full spectrum or variants, and cognisant that the larger the represented group the greater the opportunity for research funding, the association is now called the SRNA. https://wearesrna.org/

 

My wife found Sandy's organization on-line shortly after our daughter was diagnosed, but it wasn't until we attended a TMA sponsored summer camp for the families of TMA kids in 2012 that we met Sandy and Pauline.  Previously, the TMA sponsored camp week was at Victory Junction in North Carolina, but in 2012 it moved to the Center for Courageous Kids in Scottsville, Ky., less than two hours from our home.  This wonderful facility, founded to serve medically needy kids who couldn't attend traditional summer camp, hosted a gathering of TM kids' families from around the world - in the middle of nowhere Kentucky!!!  We have been there with our daughter every year since 2012 (except this year due to CV-19).  In that time, we've met families from every continent except South America.  Off the top of my head, Canada, England, Scotland, Denmark, Germany, Georgia (the country), South Africa, India, China, New Zealand, and Australia have had families in attendance in that time, in addition to families from all corners of the US.  A main draw is the attendance of doctors and therapists from the leading neuroimmune study sites in the US - Johns Hopkins Kennedy Krieger, Mayo, and UT Southwest.   While these are all very busy and fully dedicated medical professionals who give freely their time and expertise, it eventually dawned on me that they feel compelled to attend due to the temporary concentration of those afflicted by a rare condition and the insights this brings.  In the age of the internet where families can learn about the latest in any field of research, it's these doctors who discover otherwise unknown condition associations purely by listening to the families.  For example, several years back, the topic of Chiari Malformation came up in a question/answer session.  The condition - brain structure protruding into the spinal cavity - is asymptomatic in most folks and occurs somewhere between one in one hundred and one thousand in the general population.  Imagine the surprise when the docs found out 40% of the TM kids all had this condition.  Our daughter too has this condition to a degree that her neurologist almost demands that she undergo surgery to address it, yet as there is no discernable impact on her physically, no action has been taken.

 

The CCK camp is staffed by amazing college kids from all over the country, and our daughter routinely became attached to one or more in just the few days that make up the 4-day camp session.  And they to her.  Questioning this group of early-twenties kids about their background, studies, hopes, and dreams is always a highlight of my time there.  They spend their entire summer there working to see that special needs kids have a most memorable camp experience.

 

In 2017, a Native American family from a reservation in Montana attended camp with their TM kid.  They presented to the camp a very large intricately woven blanket as a gift from their tribe.  Sandy and Pauline we so impressed that they promised to visit the Montana reservation the following month.  This grand adventure turned to tragedy, as the SUV they were riding in on the reservation sparked a raging grassland fire that engulfed the vehicle.  With her limited mobility, Pauline could not escape the inferno.  Pauline loved the TMA family and CCK, and it was a most poignant gathering with Sandy at Scottsville the following year without Pauline. 

 

We greatly miss the annual gathering of TMA families this summer.  Some, like ourselves, have been there every year since CCK began hosting.  Keenly, it's the new families who are missing out the most.  They do not yet know the encouraging support of a group of SRNA staff, CCK staff, doctors, and fellow families as they come to terms with the life of a loved one with a rare condition.   

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