On a sunny afternoon in August 2012 at the Center for Courageous Kids in Scottsville, KY, a group of parents who have children with a rare neuro-immunologic disorder got together to discuss a strategy to bring more kids to camp next year. This discussion expanded to include increased awareness and advancement of research and training of physicians and researchers focusing on pediatric cases. TMA Kids was born!
The TMA Kids initiative has three key goals, which are:
- To create a strong peer-to-peer network of support for children living with TM, ADEM, NMO and ON and for their families through quality of life programs such as camps where children can be themselves regardless of their challenges.
- To promote awareness, empower children and advocate for families and caregivers so they can more easily manage the care of their loved ones.
- To advance research, particularly rehabilitative and restorative therapies, through training of clinician-scientists and supporting novel pediatric basic and clinical research.
“I am so excited to be part of TMA Kids initiative. It is so great to have people who have walked this path before me to help me navigate through it. Though each TM path may have different twists it is the same path and for someone who has been on the path longer to share their experiences with someone at the beginning of that path is an invaluable gift! Camp is the highlight for ALL my kids in the summer. It was great for all of us to feel “normal” for 5 days. I would love to help other TM families share this experience.”
–Kim Altizer (Mom)
“Camp was the best because all my friends looked like me!”
–Andrew Beutel (Age 51/2, Diagnosis of TM)
“…the times without Mom and Dad hovering over us were awesome! Bowling, dance party and carnival with counselors”
–Brian Beutel (Age 7, Andrew’s brother)
“The TMA Kids initiative is such a terrific idea! We know kids and adults are not the same and their needs are not the same and this is no different when you have a rare neurological illness like Transverse Myelitis. Knowing there are other parents out there who can be resources for us and peers for our children is an invaluable asset I will surely be utilizing on a regular basis.”
–Mary Anne Egan (Mom)
“Having a child with TM or ADEM or NMO is a challenge. It is very difficult for the child, for the siblings and incredibly complicated and challenging for the parents. These families live with these challenges every single day of their lives. Some children get TM or ADEM as early as 4 or 5 months old, so this is all these children or these families ever know and they rarely get a break from their emotional, social and financial problems. The TMA Family Camp Program is one of our greatest accomplishments because it so wonderfully addresses the most pressing needs of these families. First and foremost, the camp experience is a real vacation for these families … a total respite from the daily problems they face. For many of these families, it is the only vacation they get. And what a vacation! The Center for Courageous Kids is a fabulous facility with a marvelous adaptive recreation program. Regardless of the level of disability, the camp program is entirely inclusive for all of the children and their siblings. The children and their families have so much fun. At camp, these children aren’t different … they just really special. And if that weren’t enough, we bring in the world’s experts on these disorders and they offer a great education program to the parents and are available to respond to questions or engage in conversations throughout the week, including at breakfast, lunch and dinner. The parents leave camp with a much needed support network through the friendships that are created between them. The children, often who are meeting another child with their disorder for the first time at camp, make friendships that will also last them a lifetime. If you are looking to make a difference in a child’s life, an exceptional difference, this is a great way to do it. Please help us get these children and these families to camp for the time of their lives and support TMA Kids. We appreciate your support!”
–Sandy Siegel (President, TMA)
We hope you will support us as we embark on this bold initiative to help our children and families have a wonderful quality of life and hope for the future!
If you would like to learn more about this initiative, please contact us at [email protected].