“The ADNP Kids Research Foundation is the world’s first non-profit organization to fund research, publish papers and promote awareness for ADNP Syndrome. Established in 2016, we are a small grassroots charity solely ran by volunteers, fueled by families and the love for our children with this debilitating rare disorder.”

In this episode, we hear Sandra Sermone, Founder & President of the ADNP Kids Research Foundation, describe how her son’s rare genetic disorder (the first US diagnosis of its kind) lead to her ongoing arduous journey to find a cure.