Close to 100 parents, providers, and extended family gathered at the LAX Crowne Plaza on Saturday October 14th for our annual State conference. This year’s theme was: Help – Here and Now, emphasizing Prader-Willi California Foundation’s mission to provide parents and providers with the tools and support to manage the day-to-day needs of their loved one or client who has Prader-Willi syndrome.
The two keynote speakers were Merlin Butler, M.D., and Barb Dorn, R.N. Dr. Butler’s talk was entitled “Prader-Willi Syndrome: Genetic Lessons Learned”; he provided a genetic overview of the syndrome, noted brain imaging differences of individuals with PWS, discussed the benefits of growth hormone, noted differences in the sub-types and concluded with what he’s learned about PWS in his 37 years of working with the syndrome. Key things Dr. Butler noted he’s learned were:
- Better awareness and advances in genetic testing allows for early diagnosis which makes a difference
- Starting growth hormone early makes a difference and can normalize stature
- The genotype may help in treatment and counseling – use advances in genetic technology
- The ability of families to set limits improves behavior
- Listening to patients and parents teaches us
- Education and support of families improves the outcome (such as is provided by PWCF and PWSA)
Barb Dorn’s keynote talk was entitled “Aging, Health & Rethinking Dietary Strategies”. Don’t let the word “aging” fool you, her talk had something for everyone because as she talked about the issues that come along with aging she also touched on strategies to improve those issues and ideas on how to plan ahead. The second half of her talk was on various strategies related to gastrointestinal challenges that impact so many individuals with PWS.
In addition to keynote speakers the conference featured breakout sessions on topics like: Transitioning to Adulthood, Navigating Individualized Educational Programs, Behavioral Management, Navigating Your Regional Center, Nutrition 101 and age-based share sessions. Attendees also got an update from the HCBS task force on issues relevant to everyone.
Though our new Executive Director has been with us since the end of April, this was the first time that many people got to meet her, and was the first time a more formal announcement was made as Board President Roger Goatcher introduced Harriet Edwards to the group in the morning. Later in the afternoon, at the business meeting Harriet was able to share some of her experiences while giving the Executive Director’s report. The business meeting also included the honoring of this year’s President’s Award recipients (read all about them here), followed by the honoring of our recently “retired” Executive Director, Lisa Graziano.
It was a day packed full of amazing information and the feeling of fellowship and support.
While the conference was taking place, we were also simultaneously running the youth and adult program where 36 individuals with PWS and their siblings enjoyed a day of “Fun in the Sun” themed activities. Thanks to our amazing program directors and to all the volunteers from local colleges who make the program a success.
We hope to see you at next year’s conference which will be in Northern California.