Month: May 2024

Breaking Boundaries: James Deale Becomes California’s First Recipient of Life-Changing Gene Therapy for Hemophilia B

James Deale faced a significant health scare at the age of 22 when he underwent wisdom teeth extraction and was diagnosed with Hemophilia B, a genetic disorder resulting from a deficiency of the blood clotting protein, factor IX. For years, James grappled with regular blood infusions and the constant worry about managing his condition, particularly when traveling. However, thanks to the LuskinOIC Hemophilia Treatment Center, he has become California’s pioneer recipient of a groundbreaking gene therapy drug set to manage his disorder.

“We’re all very excited,” said Doris Quon, MD, Medical Director at the Orthopaedic Hemophilia Treatment Center. “LuskinOIC has played a great role in this therapy because we were part of the phase-three clinical trials, which was the basis for the approval of this drug.”

Since the drug’s approval more than a year ago, six prior infusions have taken place, with the upcoming seventh infusion marking California’s inaugural treatment.

With this revolutionary therapy, James will produce his own factor IX protein, eliminating the need for further infusions. “I feel very positive about this treatment,” he said. “And I think it probably will change my life significantly for years to come.”

Discover the fascinating journey of James Deale, the first Californian to receive a groundbreaking gene therapy for Hemophilia B.

In this inspiring video, learn how James’s life has transformed thanks to the innovative treatment at LuskinOIC Hemophilia Treatment Center. Hear from medical experts and James himself about the impact of this revolutionary therapy on managing his condition. Watch now to see how cutting-edge science is changing lives.

LuskinOIC Volunteers Recognized at Luncheon

On Wednesday, April 28th, LuskinOIC celebrated the outstanding achievements of over 100 talented adult and student volunteers who reached significant milestones, ranging from 100 to 3,500 hours of service. These dedicated hours were contributed through various activities, such as assisting staff, spending time with patients, fundraising, and serving as board or committee members.

The event started with heartfelt testimonials from Ortho High volunteers Isabel Marquez and Kimberly Ferreira, and then speeches from long-time volunteers, Jeffrey and Claudia Prestine. Dr. James V. Luck, Jr., the keynote speaker, spoke about the rich history of LuskinOIC and the profound impact of its volunteers, recognizing them as the backbone of LuskinOIC’s identity and work.

Four awards were presented during the ceremony: the Exceptional Dedication & Commitment Award went to Nancy Rossi and Debbie Clark for their enduring support through the Charitable Children’s Guild; the Adult Volunteer of the Year went to Danya Fatehi; and the Youth Volunteer of the Year was awarded to Rocio Gomez. To conclude the awards portion, President and CEO Dr. Anthony Scaduto honored the Prestine family—Joan, Doug, Jeff, Claudia, Lulu, and Mateo Prestine—as the LuskinOIC Family Volunteers of the Year.

Closing remarks were delivered by Board of Directors Chair Craig Ehrlich, who expressed gratitude and admiration for all the volunteers, acknowledging their pivotal role in advancing LuskinOIC’s mission to promote health equity one child at a time.

Sports fans will be thrilled with the exciting lineup at the Gala!

Making this year’s gala a truly memorable occasion, the actor, television/radio host, Emmy winner and New York Times best selling author, Mario Lopez, will emcee the event. Best known for his role as A.C. Slater on Saved by the Bell, Lopez is currently the host of the radio program, “On with Mario Lopez,” and his own boxing/MMA podcast “The 3 Knockdown Rule.”

LA Chargers Honored

We are also proud to announce that the Los Angeles Chargers will be honored with the Stand for Kids Gala Community Inspiration Award for their outstanding contributions to the community. Their commitment to creating access and opportunities that positively impact youth in under-resourced neighborhoods is truly commendable. The Chargers share a vision of a more inclusive and supportive society, ensuring every young person has the chance to thrive. It’s a privilege to celebrate their achievements at our Gala on June 8th at SoFi Stadium!

UCLA Stars Join Us

Additionally, we are excited to welcome UCLA Quarterback Ethan Garbers to join us at the Gala. Ethan will engage with attendees by throwing footballs, signing autographs, and mentoring our Patient Ambassadors during the “pregame show” at the Gala’s Kid’s Zone, located on the 50-yard line of SoFi Stadium.

Joining Ethan in the Kid’s Zone and on stage during the show are UCLA Women’s Basketball stars Angela Dugalic and Camryn Brown. They will interact with attendees and highlight our Patient Ambassadors. The Women’s Basketball Team has been a valuable partner of LuskinOIC for nearly a year, participating in events and inspiring our young patients.

To buy tickets, become a sponsor, or learn more about the 2024 Stand For Kids Gala, click here to check out the website!