Amelia, an Angelman parent just like you
For families touched by Angelman syndrome, the community can be a lifeline. The Angelman family will support you in difficult times and celebrate your hard-earned wins. We share a common vision, that soon there can be a cure for all ages. Share to help raise awareness on the importance of community. International Angelman Day is celebrated annually on February 15.
The 15q Clinical Research Network is a comprehensive clinical network system. Each clinic has its own unique expertise and specialized care available. Individuals with Angelman syndrome will have access to a variety of professionals, including, but not limited to:
For more information, or to find a clinic, please visit
The Global Angelman Syndrome Registry is a project designed to empower individuals diagnosed with Angelman syndrome, their families and those working towards research and treatments.
Is your child with Angelman syndrome transitioning into the school system for the first time, generally at the age of 3? If so, we are here to help! FAST will provide an IEP Liaison that will guide you as you navigate through the IEP process. If you would like some help, fill out the intake form and we will contact you.
Virginia Spencer is a Special Education Advocate, ADHD Coach and Principal of Lumen Advocacy LLC, in Austin, Texas. She helps parents secure a free appropriate public education for their children with disabilities.
She has advanced advocate training in representing parents in impartial hearings from the Council of Parent Advocates and Attorneys and is a certified National Alliance on Mental Illness (NAMI) presenter.
Is your child with Angelman syndrome transitioning into adulthood? Between the ages of 16-21? If so, we are here to help! FAST will provide a liaison that will support you or answer your questions as you navigate through the myriad of tasks required once your child becomes an adult.
If you would like support, fill out the intake form and we will contact you.
Juli DelMonego is mom to 3 sons, and her 32 year old daughter Marina with AS. Juli started learning about disability rights soon after her daughter’s diagnosis, researching Special Education laws at the FSU law library in the pre-internet days. She advocated for disabled children’s rights and AS diagnosis awareness at the University of Florida’s genetics program before the Florida Cabinet and the Florida Legislature in the early 1990’s. In 1993, Juli and her husband Robert, together with another Tallahassee family, started the Southeast Angelman family support organization, which encompassed a 14 state region in the US. She was the SE Regional coordinator for the organization.
She did trainings for professionals and families for Florida’s Family Network on Disabilities and also represented families on the Florida Big Bend Transition Council when Marina was in high school. The Transition Counsel assisted with the transition into postsecondary options.
Juli has been a lifelong information junkie and proudly embraces her reputation as “that mom”.
Tracy Carreola is a proud mother of two. Tyler, and her adult angel Chelsea. She has personal and professional experience navigating federal and Florida state resources for individuals with disabilities.
She began her career at ARC providing services to individuals with disabilities in 2000. In 2003 she decided to establish her own company providing services through the Florida Medicaid waiver program, Community Experiences, which has been steadily growing ever since.
Tracy currently holds a position on the board of directors at ARC Gateway in Pensacola, Florida
Tracy is an avid CrossFit addict and is a total beach junkie. When she has free time you will find her out boating or enjoying some beach therapy with her favorite famous local drink, a bushwhacker.
Our journey to diagnosis begins much like many other stories in the Angelman community. Colin, our first born, arrived at 38 weeks after an uneventful pregnancy. He was long, lean, and had a headful of beautiful blond hair. We were discharged from the hospital and eager to settle in as a new family of 3.