Taking Action
The award-winning documentary that has captivated audiences around the globe is only the beginning! The UNDIAGNOSED team is mounting an Impact Campaign to raise $200,000 towards improving the lives of patients, families, and the healthcare industry that serves them. Join us as we use the universal power of film to create positive healthcare changes and build a more knowledgeable global community.
UNDIAGNOSED Impact Campaign Initiatives
• Global Movie Screenings
Worldwide UNDIAGNOSED educational movie screenings at schools, universities, libraries, medical teaching schools, medical institutions, community & patient advocacy groups, non-profits, government institutions & more!
• Policy Influence & Genomic Reanalysis
Support changes in regulation that allow patients who don't have a diagnosis to be covered for sequencing, but also periodic reanalysis of their genomic data until they are able to receive a diagnosis. Alex’s story illustrates the power and importance of reanalysis.
• The “Undiagnosed” Label
Much like how autism has become a commonly known and understood label for a broad range of behavioral conditions, “undiagnosed” needs to become a commonly understood, respected, short-hand label to describe medically complex cases that have not yet been able to find a diagnosis. This validation brings support to undiagnosed patients through the formation of a community, and the ability to move forward in their quest with medical professionals and insurance companies recognizing the patient’s current state.
• Specimen Repository
Undiagnosed patient data & biological samples are essential to discovering new genetic illnesses, but there is no place to store this information. Tragically when an undiagnosed patient dies, their valuable information that could lead to diagnoses and therapies for others, dies with them. A Specimen Repository is needed to store these “cold case files” so they can be studied as new technologies are developed.
CLARITY Undiagnosed Challenge
During production on the documentary, the Undiagnosed production team worked with Harvard Medical, Boston Children’s Hospital and Illumina to launch a ground breaking “diagnostic challenge” for the 5 patients whose medical mysteries the film has been documenting.
Titled the CLARITY Undiagnosed Challenge, which brought together many of the world’s best medical minds to participate in the challenge! In total 21 teams of specialists from around the globe attempted to diagnose these patients by analyzing each of the family’s newly sequenced genetic information and health records.
Undiagnosed documented the CLARITY Challenge for the film with the goal of highlighting the roles of technology, collaboration and the evolution of medical sciences. By showing innovative ideas of how diagnosis and data allocation can be successfully done, Undiagnosed will bring to light this timely issue of a profoundly underestimated population and impact the future of medicine.
1st Annual UNDIAGNOSED Camp
During production of the documentary the Undiagnosed production team in collaboration with the National Ability Center hosted the 1st annual "Undiagnosed Camp" 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 during the camp 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.
CAMPER TESTIMONIALS
“We really appreciate the NAC and Jeremy and everyone who made this camp so amazing! We were so impressed by the facilities they have, and the extra care they take for safety and comfort. The kids have been talking about all the fun things we did and all the friends they made non-stop!”
-Nuccitelli Family, Utah
“Thank you so much for all that you did to organize such incredible experiences for us!!! I can't tell you how happy we are that we were able to join you. We loved getting to know you and all the families. The food and the camp accommodations were fantastic (and I liked not having to worry about preparing meals!). And the activities were absolutely amazing for all five of us. We have never had a vacation that incorporated all our different needs so well!
When we were driving home from the airport, I looked over at Zack, and he had tears coming down his face. He said he was sad because he wanted to go back to Utah. He is having such a blast telling everyone at home about his trip, though. And so is Jeremy. Jeremy has been teasing me about the trip. He writes that skiing was still too fast, but he writes it with a huge grin, and he says he wants to do it again. He says his list of favorite things were the horses, the skiing, and the rock climbing. Zack's list of favorite things were the skiing, the swimming, the campfire, and dancing to Happy with Mary Elizabeth. My favorite was watching all three of our kids have so much fun with new friends.”
-Hobbs Family, Texas