Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
This week marks the 6th Annual National Eosinophil Awareness Week! This special week, honored each year during the third full week of May, was designated to create awareness of and educate others about eosinophil associated diseases (EADs), an emerging healthcare problem worldwide for which there [...]
Any parent who has ever had a child in the hospital can relate. We’ve all been faced with the dilemma of which treatment we should support and which we should question. When we have more than one option to treat our child’s illness, we’re grateful—but [...]
More than three million people in the United States suffer from epilepsy at an estimated cost of 15.5 billion annually. In the United States, more than 300,000 people with epilepsy are under the age of 14 and more than 500,000 are over the age of 65. [...]
The Williams Syndrome Changing Lives Foundation is launching a direct donation program called PROJECT 7. This program allows donors to sponsor an individual with Williams syndrome. Donations made to specific individuals will assist with their medical, developmental, educational, recreational and therapeutic needs. A hundred percent of [...]
In 2010, the Williams Syndrome Association designated the first full week in May as “Williams Syndrome Awareness Week.” In the years since, the number of awareness events for Williams Syndrome held annually has grown tremendously, and this year, Congressman Jim Moran will introduce a resolution [...]
Dear Warriors, Have the last five years of chronic stress and uncertainty been accompanied with hope? There are varying degrees of hope, and I will share what ours have been. We have had hopeful years. Hopeless days. We have hoped the ongoing nightmare would come to [...]
Just one moment… As a documentary filmmaker sometimes that’s all I’m looking for. One moment that defines the story, something I couldn’t have planned for in pre-production, something that would never make it to the shot list because I couldn’t have imagined it. And it’s [...]
