Hi MAPK8IP3 families and friends of our community,

I wanted to share of our end-of-year 2025 report for what we accomplished in 2025:ย 

2025 End of Year Report

  1. Served approximately 90-100 families worldwide
  2. We raised $2230 (of this, $120 raised through Etsy T-shirt sales) with $1430 earmarked specifically for the Natural History Study
  3. Six social circle support groups scheduled over Zoomย 
  4. First virtual conference over two days in November 2025 with research presentations and educational sessions on reading interventions and self-care for caregivers
  5. School advocacy educational session
  6. Connected with RTW Foundation to provide ongoing rare disease advising
  7. Began sending out newsletters via email and our private Facebook page to families to disseminate information and resources
  8. First paper on Natural History Study published
  9. Joined Global Genesย 
  10. ย Began assembling Scientific Advisory Board

Thank you for all the ways you have been involved in and supported our organization in 2025! We are so grateful!

Anne Jones,

Board President

The CureMAPK8IP3 Foundation

connect@curemapk8ip3.org



Leave a Reply

Search

About

The CureMAPK8IP3 Foundation is a non-profit global community dedicated to improving the lives of patients and families affected by aย MAPK8IP3ย gene mutation. The Foundation works to raise community awareness of MAPK8IP3-Related Neurodevelopmental Disorder, facilitate research related to MAPK8IP3-Related Neurodevelopmental Disorder, collect and disseminate information and resources related to MAPK8IP3-Related Neurodevelopmental Disorder, and connect and support those individuals and families affected by MAPK8IP3-Related Neurodevelopmental Disorder.

Categories

Recent Posts

Tags

Social Icons

Translate ยป

Discover more from TheCUREMAPK8IP3 Foundation

Subscribe now to keep reading and get access to the full archive.

Continue reading