Hi friends of The CureMAPK8IP3 Foundation!
It has been an exciting 2024 so far!
First, thank you for your tremendous support of our 29 for 29 giving campaign we held in February! It was a big success, and we were able to raise $6,000! This is enough for four individuals with a MAPK8IP3 variant to complete in-person assessments at Boston Children’s Hospital as part of our Natural History Study.
Our first conference happened this past March! We had 13 families, including two who were international, attend! It was two great days of building community and learning more about the research into MAPK8IP3 and its related disorder!
Finally, continuing with the exciting updates, we have received our 501(c)3 public charity designation from the United States Internal Revenue Service! This means that donations to our organization are now considered tax-deductible.
This summer, we have held two informational sessions for our families on ABLE accounts and Augmentative and Alternative Communication (AAC). We are so grateful to Laurie Schaller with the ABLE National Resource Center and Jacquelyn Vorndran with Brave Roots Speech Therapy for sharing their expertise with us!
Looking ahead to the rest of the year, we are going to be continuing to raise funds to support our Foundation, our families, and research into MAPK8IP3-Related Neurodevelopmental Disorder. We will also be running a fundraising campaign this fall and would love your support!
Thank you again for all your dedication to our cause and our families!