August 15th, 2024 marks Global Genes’ 16th birthday! Since 2008, our organization has made significant efforts and successes within the rare disease community. To celebrate, we’ve asked those who have worked alongside Global Genes to talk about memories, experiences, and the impact that Global Genes has had on their lives.
Daniel DeFabio, Director of Community Engagement at Global Genes
After losing his son Lucas to Menkes syndrome at just 11 years old, Daniel DeFabio dedicated himself to the rare disease community, now serving as the Director of Community Engagement for Global Genes.
“It was 2015 when I first discovered Global Genes. I wasn’t sure what an advocate was but I didn’t feel it was me. I was someone raising awareness for Menkes Disease. Did that count? I wasn’t sure the Patient Advocacy Summit was a place for me. It took a lot of encouragement to get me there. Despite the fact that I had been nominated as a Champion of Hope, and I had won the RARE Patient Story Award that year from Global Genes, it was only after Carrie Ostria on the Global Genes team encouraged me to attend and to apply for a travel stipend that I felt maybe I should be there.
Once I was there I was stunned to discover so many of ‘my people’ and to be exposed to so many different types of advocacy. It was overwhelming but empowering. It was at this event that I met Bo Bigelow and we discussed the needs to get our stories into the world that led us to found DISORDER: The Rare Disease Film Festival Soon the doubts that I belonged were gone. It put me on a path that changed my life.”
Vicky Arteaga & Debbie Requesens, SHER (Sociedad Hispana de Enfermedades Raras)
“We met at the first Global Genes Health Equity Forum in Philadelphia, in 2021. We felt this event was a great opportunity for the underserved Hispanic population to be involved in rare diseases, but we soon realized there was still so much to be done! It was during a break, between presentations, that we started talking and decided that it was up to us to create a space for our community to come together and increase our participation in rare disease research and advocacy. The Hispanic Society for Rare Diseases, SHER, was born from these conversations and we will always remember that event as the birthplace of our foundation. We were able to lead a panel to increase inclusion of Hispanics in rare diseases during the third Health Equity Forum, and we still engage often with Global Genes and its members to continue the conversation on this very important topic.”
Georgene “Gina” Glass, Founder of the Dreamsickle Kids Foundation
As a RARE parent, Georgene “Gina” Glass, founder of the Dreamsickle Kids Foundation, understands the importance of being on the front lines, calling for further treatment and cure of sickle cell disease.
We are honored to have received this special birthday message and reflect on how Global Genes has supported Gina in her journey:
“Wow, it’s hard to believe it’s been almost six years since I joined the Global Genes family. My involvement has grown, and I’ve made so many friends in this incredible community. As a mom of a child with sickle cell disease and a new nonprofit founder, Global Genes has been invaluable on my journey as a rare caregiver and advocate, especially for minority communities.
Seeing the organization’s growth into a truly global rare disease leader inclusive to all is inspiring. Global Genes provides a safe space for those with rare diseases, offering a place to connect, learn, find support, and have a voice. Happy Sweet 16, Global Genes! Here’s to many more years of making a difference.”
Mike Graglia, Rare Disease Dad and Founder of the SYNGAP Research Fund
“Three days after my son’s diagnosis with SYNGAP1 in 2018, Global Genes was having an event in San Francisco. Having no idea what I was doing, I went. The founder greeted me and we have a conversation that set me on course to create SRF with my wife Ashley. It was like being embraced by a knowing and loving new family as we navigated this devastating new world. The GG Conferences & Bootcamp with all the education, resources, connection, and community contributed to the success of the SYNGAP Research Fund today.
My son, our family and our community have all benefited, with several programs in our pipeline and a vibrant, connected patient community. We have much hope.”
Before you leave, check out these special video messages from Global Genes’ Founder and Chief Mission Officer, Nicole Boice, to learn more about our origin story, memorable moments, and the importance of our toolkits as a resource!
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