My daughter Chloe was diagnosed with Angelman Syndrome March 24th, 2016. Angelman Syndrome (AS) is a severe neurological disorder affecting approximately 1 in 15,000 live births. AS is characterized by profound developmental delays, problems with balance and motor coordination, loss of functional speech, epilepsy and behavioral uniqueness.
Our Children spend their days in therapies; physical, occupational and speech and they don't complain, they embody love and brighten the lives of everyone they come into contact with.
They are Angels and it is our job as parents to do everything in our power to help make their lives easier, whether by making sure that the food they take every 2 hours is the right thing for their bodies and minds, making sure that they get time to relax and be children so that life is not always a series of therapies and that we have hope. Hope that they will live independently, hope that we will here our babies say mama and dada, hope that they can tell us when the are sick or hungry or thirsty.
Because without that hope and help from the many people in our lives and the scientist that are working to cure this disease life would be unimaginable.
With recent advancements in the understanding of AS, treatments for this disorder are not only possible, they are probable.
Despite its often devastating effects, Angelman syndrome is a simple disorder involving only one gene. FAST scientists have already cured AS in the lab using several different approaches. FAST is committed to bringing life-changing treatments for Angelman syndrome to clinical trial within two years – but we need your help.
FAST has brought together a multi-disciplined team of more than two-dozen scientists from multiple universities and pharmaceutical companies to join forces on a focused path to a cure. Their work will change life for people with Angelman syndrome and, potentially, related disorders like autism and Alzheimer’s disease. FAST is the largest non-governmental funder of Angelman syndrome research and the only organization with a detailed plan towards a cure. FAST has set a $2 million community goal for this year. If we can meet this $2 million goal, we have an excellent chance of getting those funds matched -- and the faster we will be able to start clinical trials. Every dollar counts!
The more people who know about FAST, the greater FAST’s impact, so please spread the word by sharing my page with your friends and family. Thank you in advance for your generosity, it means a lot!