On Tuesday, November 14th, 2017, Ear Community was one of nearly 40 foundations and advocates from all over the country who joined together for the 1st Kids First Patient User Workshop meeting at the Children’s Hospital of Philadelphia, in collaboration with the National Institutes of Health. Representatives from the attending nonprofits shared their thoughts and ideas on how the research community and advocates can collaboratively join together to help meet the needs of pediatric patients diagnosed with structural birth defects or cancer find the much sought after information they search for online or publicly when diagnosed. Those who attended, contributed ideas and suggestions for the development of a new website and data portal, which will enable patients to collaborate with researchers to find cures for rare disease types, know if clinical trials are available and when, and find the latest information pertaining to a vast variety of causes.
Melissa Tumblin, Founder and Executive Director of Ear Community, was one of the many representatives who spent time with researchers in hopes of helping provide information in regards to the latest on Microtia and Atresia. This flag ship program also hopes to create a sense of community where patients and researchers can go to find helpful resources, such as the many nonprofits like Ear Community, helping diagnosed individuals and their families, along with organizations connect. In addition to the continuous efforts that Ear Community makes toward bringing awareness to the public about Microtia and Atresia, Ear Community looks forward to being one of the many reputable nonprofit organizations listed as a helpful public resource for families and researchers.
Pictured below is a group picture of representatives from various nonprofits along with geneticists and some of the medical professionals from the NIH and CHOP who are trying to make a difference along with Ear Community through the Kids First Foundation.
Ear Community enjoys collaborating with the many organizations and medical professionals that we do in hopes of making things better for the families who have loved ones who have Microtia and Atresia. We look forward to being a part of the Kids First Foundation program and we applaud the opportunity to work with the public and with medical professionals and researchers whenever given the chance to. To learn more about the Gabriella Miller Kids First Pediatric Research Program through the NIH, please click here.
Thank you,
Melissa Tumblin
Founder and Executive Director
Ear Community
www.EarCommunity.org
About Melissa Tumblin
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