Still from CBS Chicago: New Therapy For Batten Disease A Vindication For Family; Inaugural Orphan Dream Award
— Megan Euker
LOS ANGELES, CALIFORNIA, UNITED STATES, January 26, 2024 /EINPresswire.com/ — At a packed, star-studded gala/70th birthday party held at the ‘London,’ Robert F. Kennedy, Jr. (Bobby) was awarded the 2024 Orphan Dream Award. The MC of the event was Tony Lyons, CEO of Skyhorse Publishing.
In its eighth year, the Orphan Dream Award has been presented to people who make a difference in rare or “Orphan Diseases.”
Some past recipients of this award include:
-Dr. John Tisdale of the NIH: Dr. Tisdale was featured on “60 Minutes” for his work in curing Sickle Cell Disease
-Dr. Lucio Luzzatto, former Chairman of the Ethics Committee of the American Society for Gene Therapy. Dr. Luzzatto is author of countless medical pieces, the former Chairman of the Department of Human Genetics and as Attending Physician in Genetics and Hematology at Memorial Sloan Kettering Cancer Center, and has worked with Sickle Cell Disease patients at the Muhimbili University Center in Dar es Salaam
-Dr. Franco Locatelli, head of Italy’s Health Department
-Dr. Michel Sadelain, the 2024 winner of the Breakthrough Prize in Life Sciences ($3,000,000)
The iconic “London West Hollywood at Beverly Hills” was overflowing with the who’s who of Hollywood. In attendance were countless film and show producers as well as writers and actors, including Oliver Stone, George Nelson, Cheryl Hines (Bobby’s wife), pianist Greg Spero, singer Patrick Girondi, Mel Gibson and others.
The idea of the Orphan Dream Award started with the VanHoutan Family of “Noah’s Hope.” Over the years, The Noah’s Hope organization has funded millions in research for “Battens” disease, a rare neurological affliction which mostly claims its victims in their teens.
Jennifer and Tracy lost their son Noah to the ruthless and unforgiving disease. Noah, a fighter to the end, succumbed on March 26, 2016.
The family was featured on “CBS’s” episode highlighting how Jen and Tracy VanHoutan, in the face of tragedy, selflessly helped others.
Among their many kind gestures, in the name of their son, the VanHoutan family gifted a Versace jacket to singer/songwriter Patrick Girondi.
Knowing that Mr. Girondi would perform in Italy, at Matera’s magical “Casa Cava,” the VanHoutans asked Mr. Girondi to sing for Noah and all the children who have succumbed and are suffering from the affliction.
A rare event for Southern Italy, snow, resulted in the cancellation of Patrick Girondi’s 2017 Italian Christmas concerts.
Hearing of the story, artist Megan Euker moved to action. At the time she was teaching at the School of the Art Institute of Chicago. She made a bronze sculpture depicting Patrick Girondi in the gifted Versace jacket, to present to the VanHoutan family. Over four years, she created 96 sculptures. Many of the sculptures were sold to top art collectors and galleries such as Linda Warren Projects.
Each and every year, Euker donates a sculpture, which is the Orphan Dream Award.
Megan Euker, two-time Fulbright grant recipient, artist and Orphan Disease Advocate explained the incredible history of the award to a hushed, mesmerized crowd.
“Every year we search the world for exemplary folks to be awarded. For his contributions to humanity; devotion to bettering the United States healthcare system; his fearlessness to speak against injustice; and fighting for health issues in his David versus Big Pharma battle, each and every person with an Orphan Disease benefits.”
The entire room was quiet, as if it were completely empty. Euker continued, “The 2024 Orphan Dream Award goes to Bobby Kennedy.”
The packed crowd exploded with applause and gave a standing ovation.
“The overflowing Birthday party was a blast! Jovial gentlemen yielded their seats to standing women who were overflowing into the hall. It was truly an unexpected pleasure, packed with Hollywood’s most respected pillars,” said producer, writer of “Cut Throat City” and Apple’s number one “Scrooge: A Christmas Carol,” P.G. Cuschieri.
Accompanying the award, this year, $500,000 will be dedicated to Sickle Cell Disease research at Southern Illinois University and the University of Tennessee in the laboratories of distinguished Professors Andrew Wilber and Frank Park in honor of Bobby Kennedy’s efforts which resulted in his well-deserved “Orphan Dream Award.”
Recently, gene therapies have been approved at millions of dollars per patient. Drs. Park and Wilber are dedicating their lives to the creation of accessible gene therapy for all patients, not just the richest patients.
“The prices are nonsensical and an insult to every human being,” says renowned street philosopher and 2022 Orphan Dream Award recipient, Kevin Calhoun Dever.
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Article originally published on www.einpresswire.com as Presidential Candidate Bobby Kennedy Wins the Coveted Orphan Dream Award