Bestselling Author Mitch Albom Helps Natalie’s Wish Raise $2.3 Million; Cure Plans Outlined For Rare Disease
Mitch Albom, author of best-selling memoir “Tuesdays With Morrie,” along with a $1-million challenge grant helped raise $2.3 million for Natalie’s Wish, the fundraiser for the Cystinosis Research Foundation. All CRF donations go to research on cystinosis, a rare genetic, metabolic and fatal disease. Foundation officials expect a cystinosis cure will be developed within five years.
Despite the recessionary economy, 320 people attended the eighth-annual fundraiser May 8 at the Balboa Bay Club in Newport Beach, Calif., including families of 12 children with cystinosis who came from all over the country. Three family foundations set up for children with cystinosis donated $373,000 and an anonymous donor gave $1 million that was offered in the form of a challenge grant.
There are about 2,000 cystinosis sufferers, mostly children, worldwide. In patients with cystinosis the amino acid cystine accumulates in the tissue due to the inability of the body to transport cystine out of the cell. Over time, cystine damages various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Other complications include muscle wasting and difficulty swallowing. As the cystine accumulates in the cells, all the body’s organs slowly deteriorate.
Since its formation in 2003, the CRF has funded and committed more than $6.9 million in cystinosis research and fellowships in six countries and has made great strides to solve the mystery of the genetic disorder. The CRF is the world’s largest non-profit provider of funds for cystinosis research.
“We are grateful for the tremendous support we received this year from our friends, cystinosis families across the country and especially from the real estate industry,” said Nancy Stack, president and co-founder of CRF. Her husband, Jeff Stack, is a managing partner of the SARES•REGIS Group of Irvine, Calif. He is prominent in the Southern California real estate industry and is a past chairman of the National Multi Housing Council and is a trustee of the Urban Land Institute. Their daughter Natalie, 18, was diagnosed with cystinosis as an infant.
She said plans are to begin a primate study in 2010 that will lead to clinical trials of a cure for cystinosis “within the next four to five years.”
“Given the brilliance of our researchers around the globe and the funding strategies we have employed, we are certain to find a cure,” she said.
Most dinner guests had attended previous banquets, but organizers said this year’s event was a highlight for many because Albom was as good a story teller in person as he is print. The audience was engrossed in Albom’s 35-minute talk that centered on life lessons about giving that he drew from visits with his late Brandeis University sociology professor Morrie Schwartz.
“Natalie and her story have touched so many people,” Albom concluded. “Why do you think that is? It’s because in the human heart there is this element that wants to help, wants to give, wants to live on. That is the essence of our immortality. The difference is what you do with your circumstance, what you do with your blessings.”
Donations to the Natalie’s Wish event received prior to the dinner totaled $654,000. Dinner guests contributed $532,500 in event’s closing fund-a-cure, which included contributions from three cystinosis foundations: $200,000 from the Jenna & Patrick’s Foundation of Hope, www.jennaandpatrick.org, $100,000 from 24 Hours for Hank, www.24hoursforhank.org and $73,000 from Hope for Holt, www.hopeforholt.org. Additionally, $95,250 was received in the live auction with the highlight being a 13-week-old Labrador puppy, Bella, sold for $25,000. In the weeks before the event, an anonymous donor issued a $1-million challenge grant, which secured the event’s fundraising success despite the economic downturn.
Because the cost of CRF’s operations and fundraising activities is privately underwritten, 100 percent of all donations are directed to research.
CRF-funded research already has brought about a reformulation of the drug, cysteamine, which slows the progression of cystinosis by removing the cystine from cells. Raptor Pharmaceuticals acquired the license for the slow-release cysteamine reformulation and is seeking final approval next year by the federal Food And Drug Administration.
Nancy Stack said that if CRF-funded researchers at the Scripps Research Institute in San Diego, Calif., aims in research on gene and bone-marrow stem-cell therapy are met this year, “The next step in the plan will be to test the efficacy of their discoveries using primates, bringing us one step closer to human clinical trials that will test for a cure for cystinosis.”
