Natalie Stack and the Cystinosis Research Foundation
The 2015 Natalie’s Wish gala at the Balboa Bay Resort raised more than $2.3 million for the Cystinosis Research Foundation. CRF is an OC-based nonprofit that helps identify, develop and fund scientific research for the treatment and eventual cure of cystinosis, a relentless and painful disease that affects 2,000 worldwide, mainly kids.
Natalie Stack has cystinosis. She’s 24; the average life expectancy for those with the disease is 27. “Natalie’s Wish” refers to a birthday wish for a cure Natalie made at age 11. It inspired her parents Jeff and Nancy Stack to found the CRF in 2003. The foundation has raised more than $27 million since.
Some 425 guests gathered at the Balboa Bay Resort for an inspiring event that included cystinosis families presenting checks from fundraisers they held. Jeff Stack, a business leader and former U.S. Marine, spoke movingly about what patients and families living with cystinosis face. But perhaps not for long: Nancy Stack announced that the first clinical trial using stem cell therapy is anticipated on 2016. The treatment, if successful, could potentially cure cystinosis, and also impact other diseases that affect millions.