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OUR STORY
Our son James (age three) had his first episode when he was 5 months old. This was the start of a medical diagnosis that would forever change our lives. James was rushed to the hospital and after his initial evaluation, it was determined he should be transported to a nearby children’s hospital for future testing and monitoring. After a complete workup including blood work, MRI, and EEG it was determined that James had abnormal brain activity, which led to the diagnoses of epilepsy.
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After countless doctors’ appointments and still grasping for answers, we decided to have genetic testing done. The genetic report came back with a report of a single genetic mutation known to cause epilepsy. Information on the genetic mutation was limited at best as it has only been recently discovered and studied. The unforgiving diagnosis of no known cure was a heavy burden.
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The diagnosis of a rare disease sparked a desire to find a cure for James and all the other families impacted by this genetic mutation. We continue to meet with new doctors, researchers, and companies that look to offer hope to improve James' life and all other families impacted.
YWHAG Research Foundation
The YWHAG Foundation was started to provide resources and support for families as well as organizations who are working towards a cure. Our mission is to establish a community and raise awareness for this disorder.
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Community
The YWHAG Foundation was born out of a deep-seated desire to uplift and support. Part of our mission is to serve as a steadfast resource for families grappling with the impacts of YWHAG-related conditions, and organizations fervently working towards finding a cure. As genetic testing becomes increasingly prevalent, we anticipate a growing community of people touched by YWHAG. We aim to foster a supportive, inclusive, and empowering environment for these families, navigating the unique challenges presented by YWHAG together.
Awareness/Advocacy
Education and awareness form the bedrock of our advocacy efforts. We strive to empower families, both newly diagnosed and those already living with a YWHAG-related condition, by equipping them with the latest medical information, potential treatments, therapies, and medications. By shedding light on this rare condition, we hope to encourage informed discussions and promote wider recognition of the realities faced by families affected by YWHAG.
Research
The realm of research holds immense promise for those affected by YWHAG. We diligently track and communicate advancements in medical research related to our cause. Understanding that knowledge can lead to breakthroughs, we partner with scientific organizations to further collective studies and explore potential treatments. Through our persistent research and collaboration efforts, we aim to catalyze scientific progress towards a cure, offering a beacon of hope to all families impacted by YWHAG-related conditions.
