Prader-Willi Syndrome Association Conference News
First, I want to make a correction. This past conference was the 2nd Conference. The Chapter was not able to get a conference together for various reasons in other locations which is why the called us and asked if we would allow them to use our church again. So the only conferences to be held by the Texas Chapter of PWS in the last 16 years have been held at our church! I doubt if there is anyone who remembers that in 1985,1986 and 1987 SBPC also allowed quarterly meetings to be held in our church and provided child care to 2 families from other states (drop in at the Learning Center) during the 1987 National Prader-Willi Syndrome Association Conference which was held in Houston that year.
The first conference of this newly activated chapter was held at SBPC in 2010 shortly after The Gathering Place was completed and consecrated. Approximately 65 individuals attended that conference with only 11 children in the YIP (Young Children and Infant Program). The conference began at 9 AM and ended at 3 PM. There was one key note speaker and 3 presenters and 6 vendors.
This year the conference started at 8:30 AM and lasted until 5:30 PM with 3 keynote speakers. Over 160 people registered for the conference coming from Texas, Arkansas and Louisiana. In addition to local vendors we were also privileged to have Dorothy “Dottie” and Dale Cooper, Interim Co-Executive Directors for Prader-Willi Syndrome Association (USA).
The first speaker, Melanie Silverman, Registered Dietician whose private practice in California includes several families with children that have PWS. Ms. Silverman became interested in the unique and varied nutritional and dietary needs of individuals with PWS while working on her Masters Degree in Chicago, IL. She has continued to be involved in therapies and strategies for providing lactation support to new mothers of infants with PWS (most infants have moderate to severe suckling problems known as failure to thrive) as well as devising formulas for use as supplemental nutritional support and for infants using G-tubes for nutritional supplementation. She works with families on strategies for managing the nutritional and dietary needs of the growing child as well adults with PWS, both those with obesity and those whose weight is optimal. Her presentation was not only informative, but encouraging and practical as well.
The next two keynote speakers spoke simultaneously to separate groups of parents.
Parents of young children listened to Dr. Jennifer Miller discuss the latest research on endocrinological therapies for PWS. Afterward she spoke to parents of teens and adults on what is being done now for this age population including some cutting edge research on drug therapies dealing with hypothyroidism, hypogonadism and obesity.
Elizabeth Roof, M.A. who has been doing ongoing research on the various behaviors which present with PWS at Vanderbilt University since 1995 also spoke to both groups. She spoke first to parents of teens and adults, sharing her research with us involving 45 individuals which she has tracked since 1995, ages varying from 8 years to middle age. She spoke of how the behaviors vary between sub-groups of those with PWS. (There are 3 ways one can have PWS, a broken or damaged paternal 15th chromosome; two maternal 15th chromosomes; or a failure of the paternal 15th pair of chromosomes to function which is known as transfer or imprint defect.) She spoke about how behavior changes as individuals with PWS age and those strategies that work best at controlling negative or self-destructive behaviors, both medical and behavior modification. She then talked to the parents of infants and young children sharing what her research has found to be successful in dealing with their needs.
A panel discussion was held during the lunch hour with the addition of Ann Scheimann, MD currently head of the PWS clinic at Texas Children’s Hospital. Each speaker answered questions asked by various conference attendees.
The afternoon was devoted to learning more about the best means of advocating for our children, how to insure the best outcome with the public schools, Medicaid Waivers, respite care and camps as well as PWS specific group home settings. Texas is fortunate to have two providers with homes that are set up specifically to meet the needs of young adults with Prader-Willi Syndrome. Both providers operate homes in North Texas – one near Longview, the other between Abilene and Ft. Worth. Both are investigating the possibility of opening more homes in other locations, including Southeast Texas.
The day ended with conference attendees meeting in four groups based on the age of their child with PWS for sharing sessions. I was asked to moderate the session for adults. A young woman, Michele Secor, who lives in the Houston area and attends Memorial Drive Presbyterian Church with her sister, is one of only 3 known adults with this syndrome that have successfully managed to live on their own. Ms. Secor has a normal level IQ, but does have the same difficulties with weight management and food control as others with PWS. She lives near her adult sister and is also close to her mother, having grown up in the Katy and Cy-Fair areas. She moved for a couple of years to Austin before returning here to Houston in the past year.
The Kiddie Kamp was organized and run by Sherrie Daniels, R.N. and Director of Professional Development at Healthbridge Children’s Hospital here in West Houston. The program was under the direction of the hospitals Occupational Therapist, Zoe and a cadre of volunteers from the hospital, SBPC, First Presbyterian Church of Tomball and the community. There were 22 children ages 3-16 served during the conference.
The Conference Committee members were: Amber Roberson Harkin, President of Texas PWSA Chapter; Sherrie Daniels, RN, member of the Board of Directors; Angela Frazier; Angela Royal, Kara Prince and Brooke Phillips.
I acted as liaison between the SBPC and as coordinator of volunteers.
In addition to being so grateful for the love and support of our church for Bryan and myself, I was honored by the contributions of time and talent by members of the church. In addition to assistance and support of Garth Heitschusen, Lavon Barnes and Ethan Mitchell, I would like to thank Amy Skinn and her daughter, Jessie Skinn, Katie Fairchild and her daughter Riley, Patti Nanney, Denise Wilborn, Matthew Alderson, Anne Johnson, Robert Reyer and Luna Lassiter. Without their willingness to give their time to support this effort it would have been a less well run, not as friendly and definitely not smoothly executed as it was.
As people were leaving the conference I overheard a group talking about the next conference and expressing the hope that it could be held at Spring Branch Presbyterian Church. What an awesome validation of living into the Vision.
Marguerite Priest
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