By Christopher Trela & Catherine Del Casale | NB Indy
Everyone is familiar with cancer, diabetes and lupus, but what about the 7,000 different types of rare diseases that affect roughly 30 million Americans and approximately 350 million people worldwide?
That’s where Global Genes comes in. Global Genes is a rare disease patient advocacy organization whose mission is to “eliminate the challenges of rare disease by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families.”
We learned about Global Genes and the truly valuable work the organization is doing when we attended last year’s “Tribute to Champions of Hope” gala. It opened our eyes to rare diseases, and we became instant Global Genes advocates.
We recently attended the 2014 Global Genes “Tribute to Champions of Hope” gala that benefitted Global Genes’
educational programs and its innovative Undiagnosed Patient Program.
We came away more convinced than ever that this is an important organization with a big heart.
“Once again Global Genes put on a phenomenal gala that was beautiful, educational and extremely moving,” stated Catherine. “The speakers ranged from researchers to those suffering with a rare genetic disorder. Anyone who is touched in some way by a rare genetic disorder either by living with it themselves or knowing someone who does understands what an important cause this is. Research and cures are often focused on what affects the majority so rare diseases are often overlooked or put on the shoulders of those few that are fighting for the answers. Global Genes unites those who are the minority and provides a voice to those who are overlooked.”
“Before attending the gala for the first time last year I was unaware of the issue and the multitude of rare genetic disorders,” added Catherine. “The gala this year moved me as much as it did last year. Hearing the stories of how people like 17-year-old Hawken Miller, who is living with Duchenne, have not let their disease define them and have pushed past the odds is inspiring.”
“I agree,” said Christopher. “This gala was not just about raising money, although they did net $500,000, which is pretty impressive. This was about recognizing those in the medical field who are making significant progress in the battle against rare diseases, and having those living with rare diseases inspire others to join the fight.”
Major sponsors of the 2014 “Tribute to Champions of Hope” gala included Title Sponsor, Walgreens, along with Alexion, Retrophin, Sciensus, Pfizer, Shire, Genzyme, BIO, Vanda Pharmaceuticals, BioMarin, Vidara, Novartis, Goldman Sachs, Siren Interactive and Recordati Rare Diseases, among many others.
For more information, visit globalgenes.org.
