About Celebrate Hope Foundation
Our Story
Celebrate Hope Foundation, Inc. was created by the DeCesaris and Heck families following the birth of Jenna Heck, who was diagnosed with the rare congenital neurological disorder known as Sturge-Weber Syndrome.
Like many families facing a rare disease diagnosis, they searched for answers, support, and hope. Rather than accepting the limited awareness surrounding the condition, they chose to take action by creating an organization dedicated to helping others facing the same journey.
Today, Celebrate Hope Foundation continues to bring together families, researchers, healthcare professionals, volunteers, and generous supporters with one shared purpose: improving lives while advancing the search for better treatments and, ultimately, a cure.
Our Impact
Since its founding, Celebrate Hope Foundation has organized countless fundraising events, athletic challenges, and community initiatives to support families and advance medical research.
Our efforts have raised more than $1.4 million for Sturge-Weber Syndrome research, directly supporting the work of the Hunter Nelson Sturge-Weber Syndrome Center at Kennedy Krieger Institute and helping fund research that contributed to identifying the genetic cause of Sturge-Weber Syndrome.
$1.4M+
Raised for Research
20+Years
Supporting Families
501(c)
Nonprofit Organization
Why the Hunter Nelson Sturge-Weber
Center at Kennedy Krieger Institute?
The Sturge-Weber Syndrome laboratory at KKI, directed by Dr. Anne Comi, has worked for the past 24 years with collaborators to better understand the cause of Sturge-Weber syndrome (SWS) and to develop new treatment targets and strategies. Celebrate Hope Foundation has contributed 1.4 miliion dollars to this ongoing research. This research has directly impacted those with SWS in a positive way. Dr. Comi remains the leading researcher iin the world.
Our Mission
Celebrate Hope Foundation is a registered 501(c)(3) nonprofit organization committed to improving the lives of individuals and families affected by Sturge-Weber Syndrome and facial port-wine birthmarks. Guided by compassion, driven by research, and strengthened by community, we work every day to increase awareness, support groundbreaking medical discoveries, and provide hope for those navigating this rare condition. Through fundraising, education, advocacy, and community partnerships, we are creating meaningful opportunities to make a lasting impact today while helping shape a brighter future for generations to come.
Raise Awareness
Increasing understanding of Sturge-Weber Syndrome through education, outreach, and community engagement.
Fund Research
Supporting innovative medical research that advances treatment options and brings us closer to a cure.
Support Families
Providing hope, encouragement, and meaningful resources for individuals and families throughout their journey.
Inspire Advocacy
Empowering supporters to become advocates who help educate others and champion the needs of the rare disease community.