TREND Exploration Series
June 2016 – TREND is excited to announce the AS Diet Initiative to explore the benefits of nutrition therapy for Angelman Syndrome (AS).
Sponsored by Gary Taubes, co-Founder and Director of Nutrition Science Initiative (NuSI), and Robert Goldstein, Founder of Crave Crush, and led by internationally renowned, consultant nutritionist to the Charlie Foundation for Ketogenic Therapies, Beth Zupec-Kania (RDN), the AS Diet Initiative will introduce a group of individuals with AS to a pre-ketogenic diet and track patient‐reported outcome measures including hunger, cognition, behavior, energy, body composition and quality of life. TREND Community Champion Sybille Kraft Bellamy whose son, Max, has benefited from Low Glycemic Index Treatment (LGIT) for 11 years, will join the Initiative as a parent mentor. Sybille is currently studying to become a Registered Dietician.
Over 90% of people with Angelman Syndrome have epilepsy. Clinical research by Thibert et al. published in Epilepsia in July 2012 found that a Low Glycemic Index Treatment (LGIT) is highly effective in treating AS-related seizures. Anecdotal reports from parents of children with AS suggest that nutrition therapy may have similar benefits as described by the Prader-Willi Syndrome (PWS)* Community during the PWS Diet Initiative.
The PWS Diet Initiative: In August 2015, TREND invited Beth Zupec-Kania to follow and advise a group of individuals with PWS for 6 months to explore the effectiveness and benefits of a modified ketogenic diet for those living with this rare condition. Journal entries from families reveal that the modified ketogenic diet was beneficial to their children (including hunger, cognition, behavior, energy, body composition and quality of life) despite the burden of meal preparation.
Having learned about the PWS Diet Initiative, Sybille Kraft Bellamy contacted TREND to host a Diet Initiative with the AS Community.
*PWS and AS are sometimes called sister disorders because they are both caused by the absence or lack of expression of one parent’s contribution to chromosome 15 (paternal in PWS and maternal in AS).
If you would like to participate in the AS Diet Initiative or have questions, please contact us: email@example.com.