The CHAMP1 Foundation is an organization created for parents of children with developmental delay, hypotonia, cerebral palsy, autism, and epilepsy among others diagnosed as a result of a change in the CHAMP1 gene.
CHAMP1 NEWS - April Newsletter
International CHAMP1 Awareness Day - (March 20th)
We would like to thank you our amazing community for all the effort on March 20th to bring awareness for CHAMP1.
It was great to see families mobilizing together with their CHAMP1ONs, the Foundation appreciatte all that wear purple, tried to use the date to raise funds, register and shared this moments with us.
#CHAMP1AwarenessDay monuments around the world shined with purple for CHAMP1.
1.The Christ in Rio (Brazil)
2.Niagara Falls (Canada/USA)
3.High Level Bridge(Canada)
4. National Harbor Capital Wheel.(MD,USA)
5. Falkirk Wheel Scotland
Largest study to date on CHAMP1: CHAMP1 disorder is associated with a complex neurobehavioral phenotype including autism, ADHD, repetitive behaviors and sensory symptoms
Largest study to date! Can't thank you enough for everyone that participated in this. We are thankful for the team at Mt Sinai but truth is you don't get information about patients without patients and its this generation of families that are making a difference and creating change!
This team of scientists will be attending our family conference in October and there will likely be in person oportunities to expand this project and contribute.
Second CHAMP1 Family and Science Engagement Conference 2022
The Second CHAMP1 Family and Science Engagement Conference will be held Friday, October 21- Sunday the 23rd in Orlando, Florida at the Rosen Centre Hotel.
The cost per night will be 129$ and that price will be honored 3 days prior and post-conference. There will be professional child care, lunch provided and all safety covid measures will be in place.
We look to accommodate every family's individual need(s) the best we can and will work our best to get everyone there who wants to attend.
CHAMP1 Research Foundation
Our mission is to improve the lives of those affected by CHAMP1 disorders through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.
