Camp

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 neuroimmunologic disorders and their family members to experience the joys of camp and connect with others who experience the same symptoms and conditions.

Our TMA Family Camp this year was held at The Center for Courageous Kids (CCK) in Scottsville, KY from August 1 – August 5, 2012.  CCK is a medical camp that serves children with chronic and terminal illnesses.  It is a beautiful, totally accessible facility with a wonderful adaptive recreation program.  We had 27 families attend camp from 17 different states and Ontario, Canada.  Physicians and medical personnel from the Johns Hopkins and University of Texas Southwestern TM and NMO Centers attended camp. Their presentations covered the rare neuro-immunologic disorders, symptom management, rehabilitation and support for emotional and psychological issues.

We were really thrilled to have Dr. Allen DeSena attend camp. He is the very first recipient of the two-year James T. Lubin Clinician-Scientist Fellowship Award under the mentorship of Dr. Benjamin Greenberg at the University of Texas Southwestern TM and NMO Centers in Dallas.  This center also cares for children and adults with ADEM and ON. Dr. Donna Graves and Sam Hughes from UT Southwestern joined us along with Dr. Daniel Becker and Janet Dean from Kennedy Krieger Institute, Dr. Douglas Kerr from Biogen Idec, and Melinda Smith, Board Member of Johns Hopkins Project RESTORE. We are so grateful for the time and commitment of all our medical volunteers!

The medical staff was available to the families all day long, all week long. They danced with the children, they played with the children; they are an integral part of our TMA family.

Dr. Adam Kaplin, neuro-psychiatrist from Johns Hopkins University, who specializes in these disorders, was invaluable as always to us and our families.  Additionally, we have a wonderful pediatric clinical psychologist, Dr. Lana Harder, who came to camp to work with and support the children. She conducted sessions with the children with the disorders and separately with the siblings where they are given the opportunity to share their thoughts and feelings with no other adults in the room.  This was a tremendously empowering experience for the children.

This year at camp, two different studies were conducted on cognitive dysfunction in rare neuro-immunological disorders like TM and ADEM.  One of the studies was administered by Johns Hopkins University under the direction of Drs. Adam Kaplin and Kristen Rahn and the other by University of Texas at Southwestern under the direction of Drs. Lana Harder and Donna Graves.  We hope that through this work, our physicians and researchers can gain a better understanding of cognitive dysfunction in rare demyelinating disorders.

Camp was an absolutely amazing experience.  Our heartfelt gratitude to all the staff and volunteers at CCK , our medical physicians, staff, and families.  We hope to see you all again very soon!

Until then, if you are wondering what the red war paint on Dr. Harder, Dr. Kerr and Sandy is about, read the messy games blog!!

Read about our prior camps and workshops