Today is day 11 of our rare disease initiative, and I had the absolute privilege of talking to Nev, the father of Caoimhe, who has CAMK2. CAMK2 is so rare that when they finally received their diagnosis after 11 years of waiting, Nev set out on a mission.
He contacted the other families touched by this diagnosis and started up a global organisation to provide a support network to other families and advance research into the condition. What they have achieved with regard to knowledge and advances in research in such a short space of time has been nothing short of exceptional. The condition was first described only seven years ago!
I encourage you to look at the CAMK2 Therapeutics Network
Read the story of Caoimhe and her family below. Please share; it may just help one person looking for answers. Be part of someone's solution.