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Celebrities and Rare Disease Community Turn Out To Support Global Genes Project's 1st Annual "Tribute to Champions of Hope"



   Celebrities and Rare Disease Community Turn Out To Support Global Genes
         Project's 1st Annual "Tribute to Champions of Hope" Benefit

PR Newswire

DANA POINT, Calif., Oct. 2, 2012

Rare Disease Industry Leaders and Advocates Honored; Recording Artists Chris
Mann, Katrina Parker and Elliott Yamin Gave Touching Performances

DANA POINT, Calif., Oct. 2, 2012 /PRNewswire-USNewswire/ -- On September 27,
2012, rare disease patients, advocates, patient organizations, government
agencies, pharmaceutical companies, medical researchers, celebrities, Olympic
champions and private sector representatives attended the Global Genes |
R.A.R.E. Project (www.globalgenes.org) 1^st Annual "RARE Tribute to Champions
of Hope" benefit at the Balboa Bay Club & Resort in Newport Beach, CA. The
evening was a star-studded affair to raise funds and awareness for rare and
genetic diseases that impact 1 in 10 Americans and 350 million people
globally.

More than 400 guests attended the benefit and a number of awards were
presented to celebrate the pioneering achievements of individuals and
organizations championing the rare and genetic disease cause.

"It was such an honor to celebrate the accomplishments of these remarkable
rare disease award recipients," Nicole Boice, president of the Global Genes
Project. "We are also incredibly grateful to the artists and stars who
volunteered their time and talent to make our first event a tremendous
success. Their support means the world to the millions of rare disease
patients who know they are not alone in this fight."

2012 Global Genes | RARE honorees included:

  o RARE Lifetime Achievement Award   - Mr. Henri Termeer, former President
    and CEO of Genzyme Corporation, for his pioneering work creating
    innovative rare and genetic disease drug treatments and for his ongoing
    contributions in the rare disease field

  o RARE Champion of Hope Award, Medical Care & Treatment  - Dr. Frederick
    Wigley, Director of Johns Hopkins Scleroderma Center, for understanding
    the pathophysiology and clinical features of scleroderma and developing
    and testing novel treatments for Raynaud's phenomenon and scleroderma

  o RARE Champion of Hope Award, Research & Science - Dr. Elizabeth Neufeld,
    an American geneticist whose lifetime of research has focused on the
    genetic basis of metabolic disease in humans

  o RARE Champion of Hope Award, Biotechnology - Ambry Genetics for their work
    with the Mauli Ola Foundation and for championing surfing as a natural
    treatment to help people fighting cystic fibrosis

  o RARE Patient Advocate of the Year - Deaf-blind advocate, Bill Barkeley,
    for his tireless work climbing mountains and running marathons to raise
    awareness for Usher's Syndrome, a rare genetic disease that robs people of
    both their hearing and vision over time

  o RARE Champion of Hope Advocacy Award   - Patient activist Pat Furlong,
    President and CEO of Parent Project Muscular Dystrophy, for spurring
    research toward a cure for Duchenne Muscular Dystrophy and for working
    with doctors and drug companies to improve care

  o RARE Individual Champion of Hope Award - Adam Nelson, elite American shot
    putter with seven world and Olympic medals, for his work advocating for
    children with rare and genetic diseases

  o RARE Innovator Award - Scott Shirley, Executive Director of Uplifting
    Athletes, for creating a national nonprofit aligning college football with
    rare diseases

DawnMarie Kotsonis emceed the event. Singer-songwriter Katrina Parker, a fan
favorite and star of the second season of the NBC hit television show "The
Voice," performed the jazz standard "Someone to Watch Over Me" and the Disney
classic "Baby Mine."

"Grey's Anatomy" star Jason George, who plays Dr. Ben Warren on the hit show,
gave a heartfelt speech about how since he started playing a doctor on TV, his
life has been enriched by pediatric cancer patients and their families who
have connected with him through his social media platforms and given him the
opportunity to make a difference.

Actor Nestor Serrano (Act of Valor, The Negotiator, The Insider, Secretariat)
publicly saluted his wife Debbie for everything she does to care for their
daughter Amelia who suffers from cerebral palsy.  Nestor then presented the
Rare Champion of Hope Advocacy Award to Pat Furlong, the Founding President
and CEO of Parent Project Muscular Dystrophy, an organization dedicated to
finding a cure for Duchenne Muscular Dystrophy. 

Amicus Therapeutics CEO John Crowley showed guests the trailer for the film
"Extraordinary Measures" starring Brendan Fraser and Harrison Ford, which is
based on his family's remarkable story fighting Pompe disease. 

Football legend Paul McDonald had the honor of introducing fellow USC alum,
Bill Barkeley, a deaf and blind adventurer, who reminded us that anything is
truly possible during his moving acceptance speech for the RARE Patient
Advocate of the Year Award. 

"Jane by Design" star Meagan Tandy spoke of the importance of young Hollywood
stars coming together to help children in need and then introduced
singer/songwriter Gracie Van Brunt, a young girl battling a rare genetic
disease called Shwachman-Diamond Syndrome.  Gracie took the stage and sang a
powerful ballad she wrote about her own personal experiences as a rare disease
patient.

Gracie was joined for a soulful duet of Stevie Wonder's hit "Superstition"
with recording artist and "American Idol" Season 5 finalist Elliott Yamin. 
Elliott and Gracie's voices blended perfectly together as they had the crowd
grooving along to this R&B classic. 

Elliott then shared his story of being a Type 1 Diabetic and showed the
audience the pump he must wear 24/7 in order to monitor his blood sugar. He
then performed a fitting tribute to the rare disease community with the song
"I'll Be That Bridge" from his new album "Let's Get To What's Real."

Emmy award winning producer Rudy Poe treated guests to a sneak preview of his
new rare disease documentary, "Here. Us. Now. - A Family's Fight to Bring
Medical Innovation Home." The film chronicles the story of how Hugh and Chris
Hempel, parents with no medical backgrounds, use their entrepreneurial skills
to find a breakthrough drug treatment for their identical twin daughters who
are dying from a rare progressive neurological disease called Niemann Pick
Type C. 

Chris Mann, Faircraft Records/Universal Republic  recording artist and star of
NBC's hit television show "The Voice," performed the Andrea Bocelli song
"Because We Believe," a beautiful ballad in Italian and English that offered a
prayer for hope. The audience gave Mann a standing ovation after his
magnificent performance.  Mann then invited Katrina Parker, Elliott Yamin and
Gracie Van Brunt to join him onstage for a surprise encore performance where
they ended the night with a beautiful rendition of "Over the Rainbow."  

About Global Genes | RARE  Project

Global Genes | RARE Project is the leading non-profit organization advocating
for the roughly 30 million Americans and approximately 350 million people
worldwide who are affected by rare and genetic diseases and disorders. The
non-profit organization promotes the needs of the rare and genetic disease
community under a unifying symbol of hope - the Blue Denim Genes Ribbon™. In
the United States, a disease is considered rare if it affects fewer than
200,000 Americans per disease. According to the National Institutes of Health
(NIH), there are nearly 7,000 such rare diseases and an estimated 95% do not
have a single approved drug treatment.  

Web: www.globalgenes.org
Twitter: @GlobalGenes
Facebook: http://www.facebook.com/globalgenesproject

For more information contact: 

Amy Malin
Trueheart Events                   
818-672-1268
amy@trueheartevents.com   

Nicole Boice
Global Genes | R.A.R.E. Project
949-248-7273
nicoleb@rareproject.org

SOURCE Global Genes Project

Website: http://www.globalgenes.org
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