Our annual conference was a tremendous success with expert guest speakers and great community participation. Last weekend over 150 parents and professionals met in Sacramento to improve the lives of those affected by PWS.
“As devastating as {the diagnosis} was and definitely life changing, once we hooked up with PWCF we had so much support, so much love and understanding which helped us move forward.”
Pediatric endocrinologist Dr. Jennifer Miller started the day speaking about the positive impact of growth hormone therapy for both children and adults. Dr. Miller also educated us about several supplements that are commonly used for certain symptoms (i.e. NAC for skin-picking) or deficits (i.e. vitamin B), as well as giving the audience the status of a couple of drug trials.
PWSA-USA’s Executive Director Ken Smith explained the variety of services provided by PWSA and how they and PWCF work together to help families.
Families met in age-based share sessions to discuss matters relevant to their child’s stage in life. These sessions are always extremely helpful to families as there is no substitute for sitting in a room chatting with people who can understand what you’re going through.
Dr. Suzanne Cassidy, a geneticist and pioneer in the study and treatment of PWS, provided attendees with a historical perspective of PWS noting the advancements over her 35-year career.
The final speaker of the day was Dr. Harold van Bosse, orthopedist, who provided great information about scoliosis treatment as well as other orthopedic concerns.
While parents were enjoying this information-packed day, our youth and adult program was taking place. Forty program participants enjoyed a day filled with themed craft projects, games, a visit from the Sacramento Zoo’s Zoo Mobile, and Zumba led by Board Member Daniela Rubin, PhD. Emily Dame, PWCF’s Education and Training Coordinator oversees the program with assistance from five program directors who are experienced PWS professionals or family members. The program directors lead approximately 40 volunteers recruited from local colleges to carry out the day’s schedule.
“Those of us who had the opportunity to attend left with our heads whirring with information, some new, some reiterated. Lots to think about, mull over, approach, consider, put into effect. BUT that is not only what the conference is about. It’s also about one giant family reunion! Families from all over California seeing one another again, sharing good and not so good, beaming over our kids’ successes, lending courage, strength and encouragement for concerns, surgeries and new endeavors approaching. Knowing that if our kid had a meltdown we were amongst those who UNDERSTOOD. We could exhale.”
Don’t miss next year’s annual conference which will be in Southern California in October, to experience for yourself what this long-term PWCF member experienced at the 2016 conference.
