Camp

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Download the 2013 TMA Family Camp Brochure Here!

The TMA is proud to offer a family camp for children diagnosed with ADEM, NMO, ON, and TM and their family members. For years we have been providing a chance for children with rare neuro-immunologic disorders and their family members to experience the joys of camp and connect with others who experience the same symptoms and conditions.

+APPLY FOR THE 2014 TMA Family Camp at CCK!

The TMA Family Camp will be held at The Center for Courageous Kids in Scottsville, KY from July 23 – 27, 2014! Applications are now open. Please apply here and select Family Retreat Application.  We have limited space, so we encourage you to apply early! The camp will accept the first forty completed applications from our members for review.  The application must be completed – both the electronic, online portion and the medical portion in order for camp to consider it a completed application. The subsequently submitted applications will be placed on a waiting list. Please apply early! We cannot wait to experience the magic of camp at CCK with you in 2014!

The TMA Family Camp at the Center for Courageous Kids (CCK) was held this year from July 24 – 28, 2013.  Everything about our summer camp was absolutely spectacular … from the weather, to the families that attended, to the great camp staff, to our special guests, to our incredible medical people, to the awesome program, to the great food. We had 36 amazing families at our camp from across the United States and from Canada, Scotland and South Africa whose children has been diagnosed with ADEM, NMO and TM.  There were children who came to camp who had been diagnosed more than a decade ago, and some who got their disorder only months ago.  Roberta Pesce who works with us at the TMA joined us from Madrid.  Our camp was a truly national and international affair.

In order to accommodate 36 families into 30 cabins, a few families shared space in the lodges, which turned out to be very special for these families and we look forward to expanding these opportunities at our future camps.  We had one cabin with four Moms and four daughters, all of similar age and all with transverse myelitis who formed a special bond with each other.

Special thanks go out to Debbie and Michael Capen who rented a van and helped with bring families to camp and back from the airport!

We invited Dr. Allen DeSena (University of Texas Southwestern), Dr. Teri Schreiner (Children’s Hospital Colorado), Dr. Doug Kerr (Biogen Idec), Dr. Daniel Becker (Kennedy Krieger Institute), Dr. Lana Harder (University of Texas Southwestern), Dr. Meredith Budai (Kennedy Krieger Institute), Audrey Ayers (University of Texas Southwestern) and Maureen Mealy (Johns Hopkins University) to join us and spend time with the families during camp and to participate in the education program that took place on Thursday, Friday and Saturday afternoon during our camp week.  Presentations covered all of the neuro-immunologic disorders and topics ranged from acute therapies, to long term therapies for NMO, to symptom management issues to emotional, psychological and cognitive issues to rehabilitation.  There were extensive and interesting discussions during these presentations between the parents and medical volunteers and among the parents too!  A great deal of critical information and perspective was exchanged.  The medical volunteers made themselves available to speak with families outside of the education program during the camp day … at meals, on the dance floor, in the swimming pool, in the horse barn, at the fishing and boating pond. In addition to the education sessions, Dr. Lana Harder, a pediatric clinical psychologist from UTSW who specializes in the rare neuro-immune disorders, spent one afternoon leading discussion sessions with siblings and the next afternoon with the children who have ADEM, NMO and TM.  We are especially grateful to all the medical volunteers for their willingness to spend a week at camp with our families.

 

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Dr. DeSena is in the last year of his James T. Lubin Fellowship and will begin his specialization and clinical practice in the rare neuro-immunologic disorders next year.  It was a wonderful opportunity for our families to get to know Allen on a more personal level.  There’s just nothing like covering a physician in warm purple oatmeal to facilitate a meaningful relationship, and that is precisely what occurred during the messy games.  Our experience at camp continued and intensified our relationships with the TM and NMO Centers at Johns Hopkins and UTSW.  We also established a very important relationship with Dr. Teri Schreiner at camp this year.  Teri is a pediatric neuro-immunologist at Children’s in Denver, Colorado.  From Teri’s participation in the education program, to her relationship with the families at camp to her courage and valor during the messy games, it was apparent that Dr. Schreiner would be an important resource and partner in our community for many years to come.

 

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On Friday morning, Dawna Callahan (Manager of the Paralympic Sport Outreach and Development Programs) and Dr. Anjali Forber-Pratt (Paralympic medalist who has participated in both the London and Beijing Paralympic Games) from the US Olympic Committee joined us. Anjali also holds a doctorate in education.  Both Dawna and Anjali got TM when they were very young children.  They gave a very inspirational presentation and our families were so thrilled to have them attend our camp. We will make the resources that they shared available on our website.

 

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The families had a great time at camp.  The fun is non-stop … dancing after breakfast and dinner, arts and crafts, the music room, fishing and boating, archery, bowling, playing different games in the gym, swimming, horseback riding, and evenings full of great families activities, including the fabulous messy games.

THANK YOU CCK for your warmth and generosity! It means a lot to us and the families!

We are so thrilled to announce that the TMA Family Camp will be back at The Center for Courageous Kids from July 23-27, 2014. We hope more families will join us next year!  To read more about camp and stories from campers and families, please visit our blog.

Here is one story – Ireland Thomas and her mother Brooke, shared their story in a video – http://www.youtube.com/watch?v=SpDEabJ9vRQ&feature=youtu.be.

The camp was supported through grants from The Roles Family Foundation, Biogen Idec, The Reeve Foundation’s Quality of Life Grants Program, the generosity of our members who held fundraisers in their communities and individual gifts to support camp.

Read about our prior camps and workshops