by Kristy Miller | Jun 12, 2023 | Advocacy, Awareness, Development, Disability, Family, Physical Therapy
Parents-to-be spend months if not years envisioning what their new family will look like and all the things they will do together. Should the child be born with special needs the parents begin learning about a life that they didn’t know would be theirs. Doctors...
by Kristy Miller | Mar 6, 2023 | 8p, Advocacy, Awareness, CHARGE, Hydranencephaly, IGF-1R, Joubert Syndrome, Kabuki, Noonan Syndrome, Smith-Kingsmore, Syndrome
February 28th is Rare Disease Day. It is a day that brings awareness to the over 30 million people in the US and over 300 million people worldwide living with a rare disease. A rare disease in the United States is defined as one that affects less than 200,000 people....
by Kristy Miller | Mar 1, 2022 | 8p, Advocacy, Awareness, CHARGE, Family, Kabuki, KAT6A, Smith-Kingsmore, Syndrome
Today is a day that we can highlight all of our a unique and brave kiddos with uncommon diagnoses. Today is #RareDiseaseDay. These kiddos fight to be known in a way that most of us will never know. They are born or develop conditions that start as mysteries to the...
