Philanthropy
CureDuchenne
newportbeachindy . com DECEMBER 22 , 2023 11
Philanthropy
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CureDuchenne
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facing the disease .
Hudson Sanford , a 6-year-old with Duchenne , and his family were special guests at the event . Hudson was one of the first in the country to receive a groundbreaking gene therapy at the CureDuchenne Clinic in Texas earlier this year , just days before he turned six . The treatment , approved in June by the FDA to treat children ages 4 to 5 , could slow the progression of the disease , and marked a milestone in advancing treatments for Duchenne .
Hawken Miller , a 26-year-old living with Duchenne and the son of CureDuchenne ’ s founders , Paul and Debra Miller , gave a moving speech that brought guests to their feet with a standing ovation .
“ Science is moving faster than ever . What used to take researchers decades to discover is compressed to years — but time and money is of the essence ,” said Hawken . “ We are at a critical time , where decades of research is finally coalescing , and we have some potentially transformative therapeutic approaches coming over the horizon .”
The event concluded with the announcement of the 10th Anniversary of Napa in Newport , which will be held on April 20 , 2024 , at The Pendry in Newport Beach . The 10th Anniversary Vintner Chair will be Alpha Omega .
Tickets are available at www . thenapawineseries . com / napa-innewport .
Twenty years ago , CureDuchenne was created with one goal : to find and fund a cure for Duchenne muscular dystrophy , one of the most common and severe forms of muscular
nity by the Orange County Chapter of AFP .
Among the many honorees was the Wahoo ’ s Fish Tacos Foundation , which was named Outstanding Founder . The foundation was represented by its founders and brothers , Ed Lee , Mingo Lee and Wing Lam ( a Newport Beach resident ). They were introduced by former Legacy Award winners Charlie and Ling Zhang .
Brothers Ed and Mingo Lee and Wing Lam co-founded Wahoo ’ s Fish Tacos in 1988 , and it has become one of the most iconic fast-casual restaurant brands in Southern California and beyond ( with a popular location in the Fashion Island food court ).
Committed to giving back to the community , the brothers give individually and through the Wahoo ’ s Family Foundation . The roots of their giving lie in gratitude – a gratitude for the chance to make a meaningful impact in the community that has embraced them .
The Outstanding Philanthropist award was presented to the Tarsadia Foundation . The Small Business Award was presented to My Private Professor . The Legacy Award was presented to Leona Aronoff-Sadacca .
Outstanding Volunteer Fundraiser went to Ryan & Paige Getzlaf . OC Grantmakers was named Outstanding Philanthropic Group . Outstanding Youth award went to Ethan Yochum .
Outstanding Corporation or Business , Mid-Size was Casanova // Mc- Cann
National Philanthropy Day Orange County honors those who have demonstrated philanthropy and enhanced their communities and the world . Each year , more than 130 Association of Fundraising Professionals chapters throughout the U . S ., Canada and Mexico honor the philanthropic efforts of individuals , businesses and groups . Net proceeds from the event support the ethical advancement of philanthropy in the community by the Orange County Chapter of AFP .
For further information on the event , visit www . npdoc . org .
Riverain wine being poured at Napa in Newport .
dystrophy . Today , CureDuchenne is recognized as a global leader in research , patient care , and innovation for improving and extending the lives of those with Duchenne . CureDuchenne ’ s innovative venture philanthropy model has advanced transformative treatments for Duchenne muscular dystrophy , including 18 projects that advanced to human clinical trials and multiple projects to overcome the limitations of exonskipping and gene therapy .
In addition , CureDuchenne contributed early funding to the first FDA-approved Duchenne drug , pioneered the first and only Duchenne physical and occupational therapist certification program and created an innovative biobank and data registry , accelerating research toward a cure .
For more information visit www . cureduchenne . org .
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