FSH Society Announces Honorary Board Committed to Raising FSHD Awareness

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Distinguished celebrities help increase visibility of rare incurable disease

We look forward to working with all of our board members in the coming years to reach a broad audience with messages and campaigns that touch the hearts and minds of the public.

The FSH Society, the Massachusetts-based non-profit organization that has transformed the science of the rare incurable disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Honorary Board. The board of fourteen distinguished celebrities will work in cooperation with the FSH Society to raise visibility of FSHD, a disease that remains relatively unknown but which is at a critical tipping point in its progress toward a cure.

“Some of our Honorary Board members have a personal connection to the disease, which spurs their dedication to raising awareness and funds that will ultimately find treatments and a cure,” said June Kinoshita, Executive Director of the FSH Society. “Others agreed to join when they learned about the devastating impact of FSHD on patients and families and the promising research that is giving us all so much hope. We look forward to working with all of our board members in the coming years to reach a broad audience with messages and campaigns that touch the hearts and minds of the public.”

Honorary Board members include:

  •     Max Adler is a passionate activist for muscular dystrophy and has been a longtime supporter of the FSH Society. He is currently on the new ABC Family show, “Switched at Birth.” He first drew wide attention for his role in the television series “Glee.” Max recently completed production on several films including “23 Blast,” “Believe Me” and “Saugatuck Cures.” He has guest starred on other hit TV series including “CSI,” “Cold Case,” “Ghost Whisperer” and “The Defenders.”
  •     Kim Alexis is among the most famous supermodels of all time and has been featured on more than 500 magazine covers since 1978. As a committed women’s health advocate, Kim has written five books on health and wellness.
  •     Sean Astin starred in the Academy Award-winning feature film series, “Lord of the Rings.” He is also known for his performances in “Goonies,” “Rudy” and many other acclaimed films. Astin has appeared in numerous Emmy-nominated television series including “24,” “Monk,” “Law & Order” and “NCIS.”
  •     Micky Dolenz was lead singer for the iconic pop band and television show, “The Monkees.” He has appeared on numerous other television shows and in recent years has performed theatrically.
  •     Brian Goodell won two gold medals for swimming in the 1976 Olympics at the age of 17, setting the world record in each event. He went on to win three gold medals in the 1979 Pan American Games. He was inducted into the International Swimming Hall of Fame in 1986, the Orange County Sports Hall of Fame in 1984 and the UCLA Hall of Fame in 1991.
  •     Scott Hamilton is one of the most acclaimed figure skating stars in the world. He is an Olympic gold medalist, TV skating commentator, actor, performer, producer, Emmy Award nominee, best-selling author, humanitarian, philanthropist and a cancer and brain tumor survivor.
  •     Richard Karn is best known for his starring role on the long-running television series “Home Improvement.” He has also appeared in major television series such as “CTRL,” “That 70’s Show” and “Boy Meets World,” and hosted popular game shows including “Bingo America” and “Family Feud.”
  •     Christopher Knight starred as Peter Brady on the classic television series “The Brady Bunch,” as well as several other television shows, and has also appeared in multiple feature films.
  •     Florence LaRue is an original member of the six-time Grammy Award-winning group “The 5th Dimension” and has also has starred on Broadway.
  •     Pat McCormick is the only female diver in Olympic history to win four gold medals back-to-back in the 1952 and 1956 Summer Olympic Games. She holds 27 national titles and has been voted Athlete of the Year by the Associated Press, United Press International (UPI) and Sports Illustrated.
  •     Rita Moreno has won an Oscar, a Tony, two Emmys and a Grammy. Her roles span more than six decades, beginning with her Broadway debut at age 13. She has performed on Broadway, in London's West End, appeared in more than 40 feature films and has performed in regional theaters. She was awarded the Presidential Medal of Freedom in 2004 and the National Medal of Arts by President Obama in 2009.
  •     Kelli O'Hara is most renowned for her singing and acting on Broadway, and currently stars in the musical “Bridge of Madison County.” She also recently starred in the George Gershwin musical comedy “Nice Work If You Can Get It” opposite Matthew Broderick. In 2012, O’Hara performed with her friend and colleague, pianist Steven Blier, at the FSH Society’s New York benefit concert and appeared the FSH Society’s PSAs with Blier.
  •     Stefanie Schaeffer is a lawyer and leading businesswoman who rose to fame after winning the hit TV reality series “The Apprentice” in 2007. Currently, she works for The Trump Organization and is in the process of launching a new video and book titled “Strut Your Stuff.”
  •     Mia St. John is a WBC Boxing Champion and “the Sexiest Woman in Boxing.” She has also been acknowledged by the Mexican government for her role in sports and humanitarianism, and recently released her book “The Knockout Workout.”
  •     Bill Walton is a basketball legend elected to the Basketball Hall of Fame and was named one of the 50 Greatest Players in NBA History. While at UCLA, he was a member of two NCAA championship teams, compiling an NCAA record 88 consecutive game-winning streak. He was a three-time All-American and College Player of the Year. He was also the winner of the Sullivan Award as top amateur athlete in the United States in 1973 and was the number one pick in the NBA draft in 1974. He was a member of the 1977 Portland Trailblazers and the 1986 Boston Celtics World Championship teams. In 1978, he was voted Most Valuable Player in the NBA.

The FSH Society collaborated with retired Hollywood agent and nationally recognized event consultant David Mirisch in contacting figures from television, film, sports, fashion and music.

As one of the most common muscular dystrophies, FSHD affects more than 500,000 people worldwide. The genetic disorder presents a lifelong progressive loss of all skeletal muscles, typically affecting the face muscles (facio), shoulder blades (scapula) and arms (humerus), though it can progress to affect all skeletal muscles. FSHD results in muscle strength loss that ranges between one and four percent a year during a lifetime. Approximately one-quarter to one-third of patients end up in wheelchairs.

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About the FSH Society
The FSH Society, founded in 1991 by two FSHD patients, is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society seeks to serve as a source of information and support for all patients and families with FSHD; act as a driving force in the development of research directed towards treatments and ultimately a cure; and bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities. For six consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than four percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society at 781-301-6649.

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June Kinoshita

Katherine Bragg
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