An Ultra Rare Event to
Benefit Kids with
Ultra-Rare Diseases
Join world-renowned blues guitarist
Joe Bonamassa and friends in an
exclusive Jam weekend.
All proceeds to fund treatments and cures for kids with ultra-rare genetic diseases
Each year, millions of children around the world are born with rare genetic diseases, some whose lives are altered forever and some where time is of the essence. Life changing answers are in reach but the economics don’t add up for many bioscience companies when the diseases are so rare.
For the love of kids. Let’s Jam.
Together, we can affect change so these children can live the life they deserve. The Ultra Rare Celebrity Jam is a weekend at the iconic Sunset Marquis in West Hollywood featuring amazing music by world-renowned musicians. It’s a way to celebrate the lives of these children and to accelerate hope for life-saving genetic medicine. Participating in this exclusive event is a way you can help to fund treatments and cures that may otherwise be out of reach.
BECOME AN EXCLUSIVE SPONSOR
A special weekend at an iconic venue all for a great cause.
- 154 well-appointed suites and villas, two pools and a full-service spa
- Alfresco dining at Cavatina restaurant and rockin’ nightlife at Bar 1200
- World-class recording studio home to Grammy Award-winning music
- Home away from home for many ”A-List” actors and musicians
- Morrison Gallery featuring one-of-kind images from the music industry
Meet Joe Bonamassa
One of the world’s greatest guitarists, Joe Bonamassa has graced the cover of virtually every guitar magazine. He is recognized by his peers as a virtuoso guitarist and as one of the all-time greats in the music industry. Joe has twenty-two #1 Billboard blues albums and his studio albums have also debuted on Billboard’s Top 10 album chart.
As a 12-year-old guitar prodigy, Joe opened for BB King and has since played with the biggest names in music. As a solo musician, Joe and his band sellout over 200 shows a year. Aside from being one of the world’s greatest guitar players, Joe is also one of the world’s greatest guys.
Who's Jammin' With Joe?
Check back often for exciting updates. While we look forward to many joining us, it is the surprise guest that will join Joe live on stage that is sure to be an exclusive treat for our sponsors.
Meet some of the kids who make our hearts sing.
Candela
Age: 4 years old
AADC Deficiency
Candela is a one of less than 150 children worldwide who suffers from a disease called AADC deficiency, commonly referred to as Pediatric Parkinson’s. Trapped in her body with limited ability to move, this sweet girl speaks through her beautiful eyes and her smile. 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.
Roman and Stella
Age: 2 1/2 years old and 16 months old
Niemann-Pick Type A
Imagine being the parents of two beautiful children only to learn that both have been diagnosed with a devastating genetic disease called Niemann-Pick Type A, a neurological condition that will cut their children’s lives short. Their hearts were shattered. Roman and Stella urgently need our help to develop a cure to save their lives. Hope lies in access to transformative genetic medicine so one day both can walk on their own and enjoy the taste of ice cream.
Michael
Age: 2 1/2 years old
SPG-50
As one of 65 children in the world with a genetic disease called SPG-50, Michael is being robbed of his ability to move, connect and communicate. Michael needs our help and his parents are relentless in the pursuit of a cure so Michael can beat the odds of his genetics. A cure is the around the corner for Michael, but funding is needed to deliver the cure to him and all the other children who suffer from SPG-50.
