Give RARE – Team Hopefull

This is so exciting for our family that I had to share it on Siena’s Blog!  We are always trying to figure out how to cope with all of PWS’s many symptoms through Siena’s diet, so this study has me SUPER HOPEFULL!! 🙂

To find out more read here or go to this link. THANKS!

“Outside of the ketogenic diet for the treatment of epilepsy, the importance of diet & nutrition in orphan disease as clinical intervention is not well understood. Anecdotal reports from parents of children with Prader-Willi Syndrome (PWS) suggest that a modified version of the ketogenic diet may have beneficial effects on hunger, cognition, behavior, and body composition in PWS. Although diet has been extensively used and studied as a therapeutic intervention for epilepsy, its use as an intervention for those with PWS has not been tested in clinical trials.

On March 3rd Team Hopefull will join the Give RARE movement to raise money for a series of TREND Explorations looking at diet & nutrition as an intervention for PWS. Beth Zupec-Kania, consultant nutritionist for the Charlie Foundation will follow and advise a group of individuals with PWS in order to explore the effectiveness and benefits of the ketogenic and related diets for those living with this rare condition. Data will be collected by TREND and preliminary findings will be presented at the Epilepsy Summit 2015, the Prader-Willi Alliance 25th Annual Conference and at the FPWR Canada’s next national confernece in Calgary, Alberta.

Team HopeFull was incorporated in 2011 by Rachel Johnson, Mom to Ellie with PWS, and is run by 9 board members. Eight of the nine members on the board have a child or grandchild with PWS.

Team HopeFull is a 501c3 non-profit organization that donates money to various Prader-Willi Syndrome organizations as well as to provide grant opportunities for families living with Prader-Willi Syndrome.

Our mission: Fulfilling the lives of people with Prader-Willi Syndrome through charitable contributions.

In the past 4 years, Team HopeFull has donated to help fund support, research and provide grants to families. The grant allocations include the donation of specially designed bicycles to children and funding Therapeutic Riding.

Thank you for your donations and please share!”


1 thought on “Give RARE – Team Hopefull

  1. Good, a study that justifies what I have been feeding her all along. Another reason to make sure she has two fish oil packets a day.

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