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 | Sep 19, 2022 | Balance, CHARGE, Deaf, Hearing, Vestibular
Deafness usually refers to hearing loss that is so severe that there is very little or no functional hearing. Someone who is deaf may or may not use amplification such as a hearing aid or cochlear implant. Whereas people diagnosed as hard of hearing usually have...
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...
