Our association periodically puts on seminars for our families and local caregivers/professionals, where we bring in speakers on important topics like behavioral interventions, legal issues, genetics, Fragile X associated conditions, drug studies, and more. We make these events available free or at very low cost to all of our member families.
Some notable speakers/topics we’ve hosted:
- Fragile X Syndrome: Genetics, Carriers and Associated Conditions (FXTAS/FXPOI), Reproductive Options for Carriers, and Practical Suggestions For Families.Presented by Louise W. Gane, MS
(Genetic Associate from the MIND Institute at UC Davis). Following the presentation, there was an extended panel discussion and Q&A session with Louise and Dr. Gary Feldman, MD (medical director of the Fragile X Clinic at the Stramsky Children’s Developmental Center at Miller Children’s Hospital).
- Special Needs Trust Workshop. Presented by Christopher A. Poulos, an attorney whose practice focuses on the rights of persons with developmental disabilities and their families.
- Conservatorship Workshop -Presented by Christopher A. Poulos
- New Treatments for Fragile X Syndrome and Associated Disorders – Presented by Dr. Randi Hagerman, MD.
- Supporting Your Child Inside and Out: Strategies to Effectively Manage the Behaviors of Children Affected by Fragile X Syndrome in the Home and Community Environments. Presented by Dr. Marcia L Braden.
- R-Baclofen Research Study Information Seminar. Presented by Dr. James McCracken, MD, and Dr. Bhavik Shah, MD.
- Coffee Talk LIVE! (Fragile X Associated Conditions, with Louise W. Gane, and Behavioral Interventions and Strategies for Sensory Issues, with Tracy Stackhouse).Presented by Louise W. Gane, MS, and Tracy Stackhouse, MA, OTR (Developmental & Fragile X Resource Center).
- What You Don’t Know Can Hurt You: The Implications and Awareness of Your Genetic Code.Panel discussion with Louise Gane, MS, SRI Moedjono, MD (Pediatrician/Genetic Advisor for Harbor Regional Center), Dina Ackermann (High School teacher for the developmentally disabled), Carolyn Robb (mother of one child with Fragile X Syndrome and one unaffected child)