TORCH Awards: Creating a Lifelong Flame for Advocacy
First established in 2017, the U.S. Rare Disease TORCH Awards program was created to recognize individuals who work tirelessly to transform outreach and create hope within the rare disease community throughout the United States. Past honorees exemplify how once there is a spark of advocacy, it often stays lit for a lifetime.
Over the five years of the program, 22 TORCH Award recipients have been or will be celebrated for the meaningful and lasting change they have created within the rare disease community. The individuals, dynamic duos or families who have been honored are nominated by the public and selected by Scholarship America, an independent third-party organization. After the TORCH Awards on August 26, 2021, Sanofi will have donated $110,000 to the non-profit organization of each award recipient’s choice.
Updates from Evren
Since winning a TORCH award in 2020, Evren Ayik has been very busy as an advocate, author and student.
Evren was chosen to participate in the YARR Leadership Academy through EveryLife Foundation, which is a series of online courses for young adults to learn about the roles and opportunities for rare disease patient representation in policy making, drug development and the regulatory process. He recently joined other YARR members at Rare Disease Week to share his story and advocate for continued focus on rare disease priorities.
Another way his advocacy is coming to life is through the National Niemann Pick Disease Foundation’s (NNPDF) new scholarship. The organization chose to acknowledge Evren’s TORCH Award gift by creating a new scholarship for other students with acid sphingomyelinase deficiency (ASMD) who are enrolled in two-year or four-year colleges, vocational schools, and other post-secondary institutions.
With his mother Kara, Evren co-authored a children’s book called “Extraordinary! A Book for Children with Rare Diseases.” The book focuses on identity, inclusion, and the challenges along with silver linings of living with a rare disease.
“I wasn’t sure at first about writing a book about my experiences, because once my story was out there, everyone would know I live with a rare disease,” notes Evren. “The responses have been overwhelmingly positive.”
Even more exciting, Evren completed his first year of college at Fresno State (albeit online) with courses to support his major in liberal arts and focus in special education. He made a lot of friends in his first year and is actively working toward his goal of visiting all 423 National Parks – checking off Bryce Canyon and Zion National Parks. He looks forward to moving into the dorms in the fall and going to football games. Long-term, Evren has his sights set on being a special education teacher to bring learnings of compassion, empathy and understanding to people with disabilities and special needs.
Catching up with Glenn
Dad, donor and co-founder and President of Cure Sanfilippo Foundation, Glenn O'Neill was a TORCH award honoree in 2017.
After his daughter Eliza was diagnosed in 2013 with Sanfilippo syndrome, he and his wife Cara founded the organization to fund research and to both connect and support families. To date, the Cure Sanfilippo Foundation has connected more than 90 families of children with Sanfilippo syndrome, has raised more than $15 million and has four full time staff members.
Since 2017, Glenn has spoken in various forums and conferences, including for the National Organization of Rare Disorders (NORD), the Rare Genomics Institute, and on various programs like The Doctors and Good Morning America. He also engages with pharmaceutical companies to discuss the importance of treatment options for rare diseases. He even received the 2017 GoFundMe Trailblazer award and celebrated his wife, Cara O’Neill, as she was honored at the 2020 WORLD Symposium for her contributions to rare disease advocacy.
However, what has meant the most to him and his family is the time they have together. The love Glenn has for his family is unworldly.
“While my wife and I can struggle to balance work and life, it’s our love of our kids that motivates us to work so hard,” explains Glenn. “One of my favorite memories is a family trip we took driving a mini-van through California. We had so much fun living in the moment experiencing the joy and happiness through the eyes of our children.”
Long-term, Glenn believes the Cure Sanfilippo mission will be achieved through collaboration with like-minded people – people who exhibit kindness, humility, transparency, vulnerability, inspiration, and determination.