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Joining me at the 11th Annual "Natalie's Wish" gala at the Balboa Bay Resort are the Cystinosis Research Foundation founders Nancy and Jeff Stack

Joining me at the 11th Annual “Natalie’s Wish” gala at the Balboa Bay Resort are the Cystinosis Research Foundation founders Nancy and Jeff Stack

 

I remember attending one of the very first “Natalie’s Wish” galas and hearing Jeff and Nancy Stack talk about their passion in finding a cure for cystinosis, the rare disease with no cure that their daughter Natalie had been diagnosed with at age 12. I also remember Jeff saying to me in a quiet moment that he and Nancy doubted their daughter would live to see a cure but they were determined to try. I must tell you that when I attended the couple’s 11th annual fundraiser a few weeks ago, both Nancy and Jeff were convinced their daughter would survive because a cure, they feel, is very close.

Jeff and Nancy Stack have made a phenomenal impact on the rare disease community since they took up the quest to find better treatments and a cure for cystinosis. Because of their efforts, the Cystinosis Reseach Foundation is the largest provider of grants for cystinosis research in the world, funding more than 114 studies and fellowships in 11 countries since its founding in 2003. CRF has raised nearly $23.5 million towards research studies around the world. It is a remarkable achievement.

You should have seen the 40 cystinosis families who attended the gala, many of them with their children. They had been a part of a two-day Day of Hope Conference held at the Balboa Bay Resort, where the gala was held, which included conference sessions with leading cystinosis research doctors and an Italian Fest under the stars on the beach. Many of the families have created foundations of their own to raise money for cystinosis research, and it was impressive to see the families come on stage at the gala holding enlarged checks representing the monies they raised. When the cure is found, those families will have helped make it possible. It was a heartwarming moment.

There were lots of those moments at the gala. From CRF board director John Hagestad stepping to the podium to welcome everyone and state CRF’s amazing achievements to Jeff acknowledging the doctors in attendance who are funded by CRF and are doing cystinosis research to Nancy’s and Natalie’s impassioned remarks, it was truly heartening. Another moving moment for the sold-out assemblage of 455 guests was when Erin and Chad Little came onstage for Erin to talk about their journey with cystinosis through their four-year-old daughter Olivia, who was diagnosed at 18 months.

The “Night of a Thousand Stars”-themed gala featured a spectacular ballroom. Nancy told me she and Jeff envisioned a night in Tuscany with the stars shimmering overhead, and I have to say the strings of lights gently swaying over the gorgeous dinner tables, which were both rectangular and round and covered in gold brocade linens with gorgeous white, green and orange floral centerpieces in earthen vases with accompanying rustic wooden cushioned chairs, certainly put you there. And, the floor-to-ceiling Tuscany-themed backdrops were the finishing touch. Kudos to Danielle Staffieri, CRF’s Special Events Coordinator, for organizing the effort.

The live auction, led by master auctioneer Mark Sheffield, saw some spirited bidding for tickets to Kate Perry’s world tour, the Eagles at Honda Center, and the Grammy Awards, as well as luxury travel packages to Hawaii, Aspen, San Francisco and Napa Valley, and Santa Barbara’s Bacara Resort. Acclaimed chef Alan Greeley’s dinner for 10 at the Stack’s home in Corona del Mar sold for $16,000 – three times, while the “Pick Your Paradise” package offered a choice of top luxury resorts, courtesy of Inspirato, and a $5,000 gift certificate from Traditional Jewelers to select a bauble for the trip. The Stacks also offered a hosted dinner for 12 at The Pacific Club, with Michael Browne of Kosta Browne Winery introducing the wine pairings, and Jeff, known to be a wine connoisseur extraordinaire, offered, in two separate packages, a case of highly-rated white and a case of over-the-top red wines.

The highly acclaimed Canadian quartet, The Tenors, drew the inspiring evening to a close singing two of my favorite songs – “Bring Him Home” from Les Miserables and Leonard Cohen’s “Hallelujah.” And, Nancy’s request for them to sing Bob Dylan’s “Forever Young” was a high moment as well.

The best news is that $2.3 million was netted from the awe-inspiring evening, thanks especially to Tom and Traci Gendron, who announced a gift of $500,000 to the Cysinosis Research Foundation that night. As I departed, Nancy’s words were ringing in my ears. Knowing that their daughter Natalie is 23 and the average age of death from the disease is 27, she and Jeff know that time is of the essence. Nancy said, “What I know is that one day all of you, and I believe it will be soon, will be able to say you helped cure a rare and fatal disease called cystinosis.” We are all hoping and praying that a cure will be announced at next year’s gala on April 18, 2015!

Selected photos by Bob Hodson of Hodson Studios

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