ANote from a PACS1 Mother
Taruna Reddy, President, Alya's Mother
Alya was 3 years old, when she was diagnosed with a rare disease - PACS1 syndrome. We were told there was no cure and to go home and learn to manage the symptoms.
Children with PACS1 syndrome have significant Intellectual Disabilities, severe speech delays (most affected children achieve very limited speech in their lifetime), significant motor delays, epilepsy, and will require life-long care in the most basic areas of life (such as feeding and safety).
We subsequently learnt, that there were real scientific avenues to find a treatment. We assembled a world-renowned scientific team and founded the PACS1 Syndrome Research foundation in 2017.
Alya's condition has a much higher possibility for a cure because all the patients have the same exact mutation, which is highly unusual in genetic diseases.
TODAY WE ALL HAVE AN INCREDIBLE OPPORTUNITY TO BE A PART OF THIS REVOLUTION; JOIN US; CURE PACS1; CHANGE THE FUTURE OF RARE DISEASE!
Click to watch our video here and hear from our scientists directly about why we have a real ACHIEVABLE shot of making a significant impact in the lives of these severely disabled children.
200 million children world-wide suffer from a rare disease. Only 5% of these have any kind of treatments. These could be anybody's children.
Finding treatments for diseases like PACS1 will have a cascading effect; increased press, advocacy and funding towards cures for many other rare diseases; Less parents waiting for a miracle to happen to help their children live normal lives.