Dr. Stephen Groft, National Institutes of Health, Josh Sommer, Chordoma Foundation and Six Year Old Dylan Siegel, Author of “Chocolate Bar” Book, To Be Honored at Event
ALISO VIEJO, Calif., June 27, 2013 — /PRNewswire-USNewswire/ — Global Genes | RARE Project today announced that Cimorelli, an all-girl group popularized on YouTube and signed to Universal Music’s Island label, will perform live at the 2nd Annual RARE Tribute to Champions of Hope™ benefit on Saturday, September 21, 2013 in Newport Beach, California. The annual charity event is designed to bring together various stakeholders who Care About Rare™, while honoring many pioneering individuals who are working tirelessly to advocate for the millions of patients and their families affected by rare and genetic diseases. Tickets to the charity event are available at: /2013-gala-registration/.
“We are delighted to have the Cimorelli sisters performing at our 2013 gala to help raise awareness for the millions of people collectively affected by chronic and life threatening rare and genetic conditions,” said Nicole Boice, president, Global Genes | RARE Project. “Expect an amazing night filled with inspiration as the rare disease community unites once again to honor our RARE Champions of Hope™.”
Global Genes | RARE Project is a leading non-profit organization advocating for the roughly 30 million Americans and approximately 300 million people worldwide who are affected by rare and genetic diseases. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans per individual disease. According to the National Institutes of Health (NIH), there are nearly 7,000 such rare diseases and an estimated 95% do not have a single approved drug treatment.
The 2013 RARE Tribute to Champions of Hope™ sponsors include Aegerion, Alexion, Amicus Therapeutics, Auxilium, Bayer, BIO, BioMarin, Celgene, Centric Health Resources, FK Health, Genzyme, Glaxo Smith Kline, Idis, Illumina, Intermune, McLaren, Novartis, Patient Crossroads, PatientsLikeMe, Patient Services Inc, Pfizer, PhRMA, Raptor, Sarepta Therapeutics, Shire, Sigma Tau, Siren Interactive, Synageva, Vanda Pharmaceuticals, Vertex, Vidara Therapeutics, ViroPharma, Walgreens and Watson Land Company.
Numerous awards will 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. The following individuals will be honored at the 2013 event:
- The Henri Termeer Lifetime Achievement Award – Honoring Dr. Stephen Groft, Director, National Institutes of Health, Office of Rare Diseases Research. Dr. Groft has spent nearly 30 years advancing research and treatments for millions of people afflicted with rare and genetic diseases. https://rarediseases.info.nih.gov/research/7/ordr-programs
- RARE Champion Award – Patient Driven Science – Honoring Josh Sommer, Executive Director, Chordoma Foundation. Josh co-founded the Chordoma Foundation to speed the pace of chordoma research after he was diagnosed with a skull-base chordoma in 2006. https://www.chordomafoundation.org/
- RARE Champion Award – Advocacy – Honoring Rick Guidotti, Founder, Positive Exposure. Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences.https://positiveexposure.org/
- RARE Champion Award – Advocacy – Honoring Dylan Siegel, a 6-year-old 1st grader who wrote a 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,https://chocolatebarbook.com/
For more information about the 2013 RARE Tribute to Champions of Hope™ or to learn more about the Cimorelli sisters, visit the following links:
The six sisters of Cimorelli perform top pop hits of the day in an a cappella style, their voices blending in perfect unison. Not only do these girls know harmony, each are musicians who write their own songs, talents that impressed executives at Universal Records, which signed Cimorelli in April 2010. With nearly 500 million views and 2 million subscribers on YouTube, Cimorelli has grown their enthusiastic fan base to such a level that when they released their “Believe It” EP in December 2012, it debuted in the Top 10 worldwide on the iTunes charts.
About Global Genes | Rare Project
Global Genes | RARE Project is a leading global rare and genetic disease patient advocacy organization. Global Genes | RARE Project’s mission is to unify a global rare and genetic disease community by providing connections and resources to ease the burdens of affected families. Global Genes | RARE Project works to promote the needs of the rare and genetic disease community under the unifying symbol of hope – the Blue Denim Genes Ribbon™.