This week’s blog is written by Becky Tilley, a KDVS mom and Kool person. Becky shares her experience of being diagnosed with the rare condition, Koolen-de Vries Syndrome, after her oldest son and now youngest daughter were diagnosed with the same condition. Becky’s story first appeared on the KdVS Foundation’s website.
Wife sets out to complete her late husband’s film project on children with acute flaccid myelitis (AFM)
Sarah Potter has set out to complete her late husband Scott’s film project on children living with the rare disease, Acute Flaccid Myelitis (AFM). Read her story now and get ready to see this film. She and the team reached their fundraising target!
We hope that you enjoyed Part 1 of our Rare Disease Day blog series! Part 2 will highlight our last set of rare conditions and accompanying patient groups to help raise awareness and support. Our final blog (Part 2) discusses:
Duchenne Muscular Dystrophy (DMD)
Guillain-Barré Syndrome (GBS)
Tuberous Sclerosis Complex
Tyrosinemia Type 1