Global Genes| RARE Project Honors 7-Year-old Philanthropist

Global Genes| RARE Project honors 7-Year-old Philanthropist

Non-profit hosts celebrity Gala and will present RARE Champion award to seven-year-old Dylan Siegel who has raised over $375,000 towards a cure for his best friend’s rare disease

 

Newport Beach, CA (September, 20 2013) – Dylan Siegel, author of  “Chocolate Bar,” has a sweet party to attend. On Saturday evening September 21, 2013 (at the Balboa Bay Club Newport Beach, CA 5PM press call), the 2nd grader who wrote the book called “Chocolate Bar” to raise money towards a cure for his best friend’s (Jonah Pournazarian) rare liver condition called Glycogen Storage Disease 1b, http://chocolatebarbook.com/, will be honored with the RARE Champion Award – Advocacy with a special presentation by the Laker Organization.

“We are expecting an amazing and magical evening as the global rare and genetic disease community unites together to honor each other’s achievements,” said Nicole Boice, President & Founder of Global Genes | RARE Project. “My hope is, as more people understand the unique set of healthcare challenges facing rare disease patients and their families, they are inspired to take action and get actively involved in this movement.”

Numerous other awards will also be presented at the 2nd Annual RARE Tribute to Champions of Hope™ to recognize the key innovators and pioneering leaders in the rare and genetic disease community including the Henri Termeer Lifetime Achievement Award, the RARE Champion Award for Patient Driven Science, and the RARE Champion Award for Advocacy.

Written and published in late 2012, “Chocolate Bar” was first sold to family and friends, and is now available at local events throughout Los Angeles and online at http://www.chocolatebarbook.com/. To date, more than 10,000 copies have been sold and over $375,000 raised with 100 percent of all proceeds being donated to the University of Florida, where research is underway to help find a cure for Pournazarian’s rare liver condition, Glycogen Storage Disease 1b.

“I am so so so excited to be able to help my friend,” said Dylan Siegel, author of “Chocolate Bar.” “Jonah and I are so thankful to everyone who has helped!”

“We are so moved by this honor for our little boy Dylan,” said Debra Siegel, Dylan’s mother. “Global Genes has supported us with a generous donation and support helping Dylan get closer to accomplishing his goal of raising $1 million towards a cure for Jonah.”

For more information about “Chocolate Bar,” please visit http://www.chocolatebarbook.com/. To keep up-to-date on the latest news for Dylan, Jonah and “Chocolate Bar,” follow “Chocolate Bar” on Facebook at www.facebook.com/Chocolatebarbook and on Twitter at www.twitter.com/sochocolatebar. Shop for sweet products at http://www.shop.chocolatebarbook.com/.

About “Chocolate Bar”

Chocolate Bar is a book born from the imagination of six-year-old Dylan Siegel who dreams that his words and pictures will help find a cure for his best friend’s rare disease and change the world, one book at a time. The goal is to celebrate Dylan and Jonah’s story and help kids everywhere discover how powerful their ideas are and that they can make a real impact. Independently published and distributed at the end of 2012, CHOCOLATE BAR, THE BOOK has sold over 10,000 copies and raised over $375,000. Every dollar raised goes directly to the Jonah Pournazarian GSD 1B Fund at the University of Florida. For more information please visit http://www.chocolatebarbook.com/.

About Global Genes | RARE Project

Global Genes | RARE Project is a leading rare and genetic disease patient advocacy organization. The Foundation’s mission is to unify the international rare and genetic disease community by providing connections and resources to ease the burdens of affected patients and their families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes | RARE Project unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 250 million people worldwide. For more information, visit http://globalgenes.org/.

 

# # #

Facebook Comments

Global Genes Comments

  1. I was so impressed by this story! I was so excited to be in the audience and see Dylan’s expression near the Laker girls! :)

Trackbacks

  1. […] a result, the Global Genes Project, a rare diseases advocacy group, honored Dylan and his best friend, Jonah Pournazarian, with the […]

  2. […] a result, the Global Genes Project, a rare diseases advocacy group, honored Dylan and his best friend, Jonah Pournazarian, with the […]

  3. […] a result, the Global Genes Project, a rare diseases advocacy group, honored Dylan and his best friend, Jonah Pournazarian, with the […]

  4. […] a result, the Global Genes Project, a rare diseases advocacy group, honored Dylan and his best friend, Jonah Pournazarian, with the […]

Speak Your Mind

*