Families affected by Prader-Willi to #LightUptheLake @ScrippsResearch Saturday, Jan. 19
Fundraiser supporting research to be broadcast on Facebook Live
JUPITER, FL – Jan. 19, 2019 – Imagine feeling constant hunger so intense that it’s akin to starvation. Children with Prader-Willi syndrome have a specific type of genetic damage to chromosome 15 that causes them to experience that frantic feeling of starvation around the clock. No matter how much they eat, they never feel satisfied. Equally tragic, all of the ailments associated with overeating—including obesity, diabetes and cardiovascular disease—go hand-in-hand with Prader-Willi syndrome, and can lead to a shortened lifespan.
Children and families affected by the condition, along with their supporters, will gather at Scripps Research in Jupiter, Florida on Saturday, Jan. 19 at 7 p.m., to have fun and raise money for research toward a treatment. They will have an opportunity to purchase floating lotus lights for a donation, and at 9 p.m. they will launch their floating flowers onto the pond at the Scripps Research campus, to show their light and to inspire scientists to keep working for a cure.
Add Your Light
Anyone can support the cause. Donations can be made online now at www.scripps.edu/lightupthelake.
The inspirational event can also be joined by viewing the Facebook Live broadcast at 7::30 pm and again at 9 p.m. on Jan. 19 by going to the Scripps Research Facebook page, liking it, and sharing. Contributions will be acknowledged on the website and read during the broadcast.
Significant progress has been made toward a treatment thanks to generous donations to the Prader-Willi Research Fellowship at Scripps Research. For 15 years, Ira and Ronnie Levine of Palm Beach Gardens, Florida, have supported awareness and research into Prader-Willi, driven by their love for their granddaughter, Josilyn. The couple formed the Josilyn’s Faith Foundation for Prader-Willi Syndrome Inc. and launched a popular LPGA golf tournament, the Prader-Willi Classic, to raise funds. They also established the fellowship at Scripps Research.
“We had to do something for Josilyn and the many other families who suffer this burden,” Ira says.
For more information about Light Up the Lake @ScrippsResearch, visit www.scripps.edu/lightupthelake, or contact Jenny Beattie, Scripps Research Events Coordinator, at 561-228-2015 or jbeattie@scripps.edu.