We have been on the journey with our special needs warrior for 19 years. Every test in the book, countless specialists, therapies and the fight to find the cause. At 17 we found SynGap. Of course I googled and fb searched and found BTG. Without hesitation my reach out was met with love, welcoming, understanding and encouragement to join in a family meet up to learn. From that day I have had a family, a community, my tribe and I know the efforts are tireless to help our kids, to fight for each one!! In 2 years I have seen the encouraging progress and every day I am thankful. It’s home.
In just a few short years, Bridge the Gap has accelerated research in SYNGAP-1, epilepsy AND autism to warp speed. Their drive and determination are exceeded only by the commitment and expertise of its founder and dedication of its board and researchers.
My daughter Lizzy was i believe number 64 diagnosed worldwide with a extremely rare genetic disorder Syngap 1. I cannot put into words how fear and hopelessness crept into our life. I reached out to Monica Weldon who was at the time blogging about her sons condition Syngap1. Bridge the Gap Syngap ERF has done what would of taken decades in five years. I watched as Monica and her family changed their lives dedicating themselves to pursuing research and possible treatment for our babies. Never stopping till we get a cure for what is terminal. That is hope the foundations concern for each child and family is beautiful to witness and be a part of.
This group has and continues to provide an excellent support group to families whose children have all been diagnosed with the same rare genetic condition. It also provides associated articles in relation to some of the conditions of Syngap1, whilst at the same time provides updates specifically related to the diagnosis.
An amazing and dedicated group of people moving mountains to build bridges of hope to a cure. Fighting for better treatments for children with SYNGAP1 mutations.