Why Proclamations Matter

A proclamation is an official recognition issued by a government leader—such as a governor, mayor, or county official—to bring attention to a specific cause, condition, or awareness effort.

For the Pitt Hopkins syndrome community, proclamations are a powerful tool to help share our story, increase understanding, and bring greater visibility to this rare genetic disorder. Each proclamation helps educate communities about the individuals and families affected by Pitt Hopkins syndrome and highlights the importance of continued support, research, and advocacy.

When a local or state leader recognizes Pitt Hopkins syndrome, it creates an opportunity to start conversations, reach new audiences, and show families that their communities stand with them. These moments of recognition help remind others that while Pitt Hopkins syndrome is rare, our community is strong, determined, and working together toward a brighter future.

Families, caregivers, and advocates can help raise awareness by requesting a proclamation from their local or state officials. The Pitt Hopkins Research Foundation is here to provide resources, guidance, and support throughout the process and to help coordinate efforts so we can make the greatest impact possible.

Please see details below for each state, as well as draft wording you can use if you choose.

Together, we can continue building awareness, inspiring support, and advancing hope for everyone impacted by Pitt Hopkins syndrome!