Ultra Rare Celebrity Jam to Raise Funds for Rare Disease Patients

Marisa Wexler MS avatar

by Marisa Wexler MS |

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An upcoming fundraising weekend in Los Angeles, dubbed the Ultra Rare Celebrity Jam, will feature a chance to hear music played by world-renown musicians, and to raise funds for the Columbus Children’s Foundation (CCF).

The CCF, in Research Triangle Park, North Carolina, works to accelerate the development of gene therapies for rare diseases such as aromatic l-amino acid decarboxylase (AADC) deficiency, and to promote access to these treatments for people who need them.

The organization is particularly focused on very rare diseases like AADC deficiency — those that affect such a small number of patients that there isn’t a strong economic incentive for companies to develop new treatments.

In the U.S., a disease is considered rare if it affects fewer than 200,000 people. The EU defines ultra-rare diseases as those affecting one patient per 50,000 people. AADC deficiency has only 100 patients documented in medical literature.

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Billed as “An Ultra Rare Event to Benefit Kids with Ultra-Rare Diseases,” the weekend-long celebrity jam will take place Oct. 1-3 at the Sunset Marquis, a hotel located in the heart of West Hollywood just off the Sunset Strip. Among other amenities, the Sunset Marquis boasts two pools, a full-service spa, restaurants, a gallery with one-of-kind pictures from the music industry, and a world-class recording studio.

One of the children who will benefit from the fundraising event is 4-year-old Candela, who has AADC deficiency. “Candela needs life-saving gene therapy and your support will allow her to obtain the amazing progress shown by over 20 children who have already received this transformative treatment,” the event page says.

Over the course of the weekend, guests at the jam will have ample opportunities to eat and drink; there also will be a silent auction and a separate live auction to raise money for the CCF.

Joe Bonamassa, a blues-rock guitarist, singer, and songwriter will lead the celebrity jam, which also will feature multiple live musical performances.

Other celebrity guests who will be making an appearance at the event include John Oates, best known as half of the rock and soul duo Hall & Oates; Steve Lukather, guitarist and founding member of the band Toto; and Billy Bob Thornton, an actor, filmmaker, and musician famous for the 1996 film Sling Blade, among other works.

Three sponsorship levels are available for individuals or companies interested in participating in the event, starting with the “Gold Sponsorship,” which costs $7,500 and covers two attendees in one suite for a two-night stay. The “Platinum Sponsorship” costs $12,500 and covers four attendees in two suites, while the “Double Platinum Presenting Sponsor” costs $32,000 and covers six guests in three suites.

All three packages include gift packs, breakfast vouchers, and the opportunity to have a company name listed on event materials, among other amenities. The more expensive options also come with other perks. For example, Double Platinum Presenting Sponsors will have the chance to have private cocktails with Joe Bonamassa and friends, as well as a private tour of the hotel’s recording studio.