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 21, 2022 | Awareness, Down Syndrome, Syndrome, Trisomy
March is a special month around the globe. With it being the third month of the year we celebrate all of the genetic conditions in the Trisomy family. The most famous of these conditions is Trisomy 21 (three copies of chromosome 21), you may know this condition by its...
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...
by Kristy Miller | Feb 8, 2022 | 8p, CHARGE, Kabuki, KAT6A, Occupational Therapy, Physical Therapy, Smith-Kingsmore, Speech Therapy, Syndrome
This time of year you may start seeing posts about kiddos with diseases, disorders, and syndromes you have never heard of. Things like Kabuki, Smith-Kingsmore, KAT6A, 8p, CHARGE. What connects all of these names and why are we hearing about them now? Well, February 28...
