On September 17, 2019, after years of searching for a diagnosis, our four year old son Jordan was diagnosed with a rare disease called TECPR2. What we would learn in the days that followed is that like Tay Sach’s Disease, TECPR2 is also a fatal genetic disease of the brain-one that will rapidly cause extreme suffering and rob Jordan of his life. While we are completely devastated by this diagnosis, we will be forever grateful that helping children with TECPR2 directly falls within the Mathew Forbes Romer Foundation’s mission: “commitment to promote and lead critical awareness, testing, counseling, and research initiatives that hold promise for the prevention and eventual cure of fatal children’s genetic diseases of the brain.”
The Mathew Forbes Romer Foundation holds a necessary and integral role in not only creating awareness for Tay Sach’s Disease but also in the scientific advancement of treatment. Our hope is that by working together with the Mathew Forbes Romer Foundation its success with therapeutic strategies can be applied to children diagnosed with TECPR2 and that we can further research and treat/ cure pediatric neurodegenerative diseases.