Vinton G. Cerf, Vice President and Chief Internet Evangelist for Google, speaks about the importance of caring for the Undiagnosed population.
Dr. Mark Graber, Founder and President of the Society to Improve Diagnosis in Medicine, points out that the diagnosis of new diseases starts with a single patient, and more time needs to be given to medically complex patients.
Heather Long talks about losing her 5 year old son to an unknown disease, and how the valuable information from his tragic situation cannot even help other children who may have the same disease because there is no database for undiagnosed cases, nowhere to put her son's information. This senseless reality inspired her to write the "CAL Undiagnosed Diseases Research and Collaboration Act of 2013," in a massive effort to create an online database for collaboration between doctors and researchers on undiagnosed cases in order to expedite diagnosis and advance our understanding of current and new diseases.
The National Ability Center hosted the 1st annual "Undiagnosed Camp" here in Park City, Utah. It was an incredible weekend! We had 5 families join us from all over the country, and everyday was jam-packed with fun, adaptive activities for the entire family: skiing, horseback riding, rock climbing, swimming at a hot spring inside of a crater, campfire sing-a-longs, and bowling- never a dull moment! And the best part, aside from all of the great smiles, was that these families were able to get to know other families just like them. No explanations needed, they understood each other's situation, and the siblings were able to meet other siblings who had an undiagnosed brother or sister- most of them had never met anyone like them before!
A great step towards building an undiagnosed community! The memories made this weekend will be with these families for a lifetime! They were truly touched by coming to beautiful Utah, being able to do activities they never thought possible, and being able to commune with other undiagnosed families.
Kevin Whiting speaks about the extreme loneliness he felt while being undiagnosed for several years. His diagnosis not only provided treatment for his debilitating intestinal disease but also allowed other people to understand what he was going through and thereby connect with him and give him support. Kevin's harrowing undiagnosed experience inspired him to want to become a doctor. He is currently studying pre-med at Pepperdine University.
Dr. Mark Graber, Founder and President of the Society to Improve Diagnosis in Medicine, speaks about the importance of giving attention to the undiagnosed population in order to advance medicine.