Press Releases

Global Genes 5th Annual RARE Tribute to Champions of Hope and Patient Advocacy Summit Raises over $1.4 Million for Rare Disease Education, Awareness, and Grant Programs

October 17, 2016

ALISO VIEJO, Calif.Sept. 26, 2016 /PRNewswire-USNewswire/ — Global Genes hosted the 5th annual RARE Tribute to Champions of Hope and Patient Advocacy Summit on September 22-24, at the Hyatt Regency Resort & Spa in Huntington Beach. More than 800 patients, advocacy leaders, biotech, and pharmaceutical executives, healthcare philanthropists, and celebrities came together to support the fight against rare disease. The weekend of heartfelt awards, presentations and performances raised over $1.4 million for education, awareness, and grant programs for patients, patient advocates and their families, with a portion directly benefitting Global Genes’ RARE Patient Impact Grant program.
Celebrity award presenters and guests in attendance included Ed O’Neill (Modern Family, Married with Children), Madison McLaughlin (Supernatural, Arrow), Luna Blaise (Fresh Off The Boat), Geoff Reeves (Transformers), and more. Rare disease patient advocate and radio talk show host, Scot “Froggy” Langley, played the master of ceremony for the evening.

As the evening began, CEO of Global Genes, Nicole Boice welcomed guests with a toast noting, “We are so honored tonight to be in a room filled with so much hope and courage.” She then invited Derek Seymour, the young man who inspired Nicole to create Global Genes, to join her on stage to have the audience sing him a very special happy 18th birthday.

Tribute to Champions of Hope award recipient and Internet sensation, Audrey Nethery, delivered the first performance of the evening. Then American Idol season 5 winner, Taylor Hicks, took to the stage and showed off his iconic vocal and harmonica skills. Finalists from season 6 of NBC’s The Voice came together for a special performance in remembrance of Global Genes advocate, the late Christina GrimmieDJ Ravi Drums closed out the night with a powerful message of sharing peace, love, and kindness to all.
Four standout honors were presented during the night and included RARE Champions of Hope: Advocacy: Sam and Alex Kimura, Founders, Sharing America’s Marrow (SAM); RARE Champions of Hope: Spirit: Audrey Nethery, Diamond-Blackfan Anemia Patient Advocate and Internet Sensation; RARE Champion of Hope and Henri Termeer Lifetime Achievement Award – Philip Reilly, M.D., J.D., AuthorChampion of Hope: Teen Advocacy: Peter Dankelson, #ChooseKIND Advocate, Children’s Craniofacial Association.
The 5th annual RARE Patient Advocacy Summit took place September 22-23, prior to the Tribute, and brought together rare disease patients, parents, advocates, clinicians, and key stakeholders for a series of best practices panels, policy driven discussions and recognitions.
Presenting sponsor: PRA Health Sciences
The events’ sponsors include: Platinum Sponsors: Alexion Pharmaceuticals, Horizon Pharma, Genentech, Pfizer and Walgreens.  Additional sponsorships provided by:  Retrophin, Raptor, Genzyme, Amicus, Shire, Healthcare at Home, Novartis, Vertex, BioMarin, Mallinckrodt, Recordati Rare Disease, Inc, Biogen Idec, Teva Pharmaceuticals, Abeona Therapeutics, Chiasma Pharmaceuticals, Ambry Genetics, Akcea Therapeutics, Bluebird Bio, Janssen, Sigma Tau, Cambridge BioMarketing, Alnylam, Dohmen Life Sciences Services, BIO, Glaxo Smith Kline (GSK), Jazz Pharmaceuticals,IDIS, Marathon Pharmaceutical, Third Rock Ventures, Voyager Therapeutics, RegenxBio, Illumina and Ultragenyx.
About Global Genes
Global Genes is a leading rare genetic disease advocacy organization. We work to eliminate rare disease challenges by building awareness, developing patient-focused educational tools, and funding patient care programs and early investigative research. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes is dedicated to connection. We unite experts, advocates and patients of all ages. Together, we actively seek treatments and cures for the 7,000+ rare genetic diseases that affect 30 million Americans and over 350 million people worldwide.