Five British celebrities championing rare diseases
This is a devastating inherited condition that often waits until mid-life to strike,” Andrews says. “Huntington’s is also a ‘marker disease,’ which means that if a cure is found, researchers will also gain insight on how to cure hereditary forms of Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease, other genetic diseases—even cancer.”
Hollywood Icon Julie Andrews Fights Against Huntington’s Disease
Andrews is receiving our Public Leadership in Neurology Award for playing a starring role in the fight against Huntington’s disease.
She’s a Hollywood legend, a Dame of the British Empire, and one of the most beloved actresses in the world. During the course of a career spanning more than 50 years, Julie Andrews has been a star of the stage and screen, mesmerizing audiences in My Fair Lady, The Sound of Music, Mary Poppins—the list goes on. This year, Andrews is also the recipient of a number of special accolades. She was presented with a Lifetime Achievement Award by the Screen Actor’s Guild in January, and in May, she will accept the 2007 Public Leadership in Neurology Award from the American Academy of Neurology.
The Academy is honoring Andrews, 71, for being a stalwart advocate in the fight against Huntington’s disease. She has served on the board of trustees of the Hereditary Disease Foundation with her husband, film director Blake Edwards, for over 30 years. The HDF funds cutting-edge research and is committed to finding treatments and cures for Huntington’s disease and other hereditary illnesses. Andrews was first approached to serve as a board member by Milton Wexler, Ph.D., the chairman and founder of the Foundation, and his daughter, Nancy S. Wexler, Ph.D., who became the Foundation’s President in 1983. Milton, who died on March 16 at 98, created the HDF in 1968 after learning that his wife, Leonore Wexler, had Huntington’s disease. Leonore died from complications of Huntington’s in 1978.
Fighting a Debilitating Disease
This is a devastating inherited condition that often waits until mid-life to strike,” Andrews says. “Huntington’s is also a ‘marker disease,’ which means that if a cure is found, researchers will also gain insight on how to cure hereditary forms of Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease, other genetic diseases—even cancer.”
In her work with the Hereditary Disease Foundation, Andrews has found that many people are still unfamiliar with this fatal neurological illness that causes involuntary movements, severe emotional disturbance, and cognitive decline. Huntington’s disease usually strikes people in their thirties and forties, although it can also attack children and the elderly. There is no treatment yet to halt the inexorable progression of Huntington’s, which leads to death after 10 to 25 years.
Because it is an autosomal-dominant disorder, each child of a parent with Huntington’s disease has a 50-percent risk of inheriting the illness. In the United States, the prevalence of the disease is approximately 10 cases per 100,000 people—about 30,000 people in all. There are another 150,000 individuals at risk.
While Andrews and Edwards could lend their celebrity status to any number of charitable causes, they are committed to helping the Hereditary Disease Foundation.
“Blake and I were thrilled when the Wexlers asked us to serve on the board,” Andrews says. “We primarily serve as spokespeople for the organization and assist with fundraising. This is a cause that both Blake and I feel strongly about, and we see how the HDF’s work has the potential to impact a variety of diseases.”
In spite of her high-profile position within the foundation, Andrews is modest in describing her own role. And her appreciation of the work that the Wexlers have done is palpable. “It’s impossible to talk about Huntington’s disease,” Andrews says, “without heralding the accomplishments of the Wexler family and their commitment to neurological research.”
“The work the Wexlers do on behalf on Huntington’s is truly remarkable,” she continues. “Both Nancy and Milton are brilliant, and they have put together a team of the best and brightest scientists and other staff-people who are truly committed to finding a cure. I would love to see them win a Nobel Prize for their work.”
Indeed, a Nobel Prize might be in Nancy Wexler’s future. In April, Nancy will receive the Benjamin Franklin Award in Life Science from the Franklin Institute for leading the combined efforts to identify the gene responsible for Huntington’s disease and establishing a model used to investigate the genetic basis of other inherited diseases. Many winners of the Franklin Institute Award have gone on to receive the Nobel Prize.
From Vaudeville to Victor/Victoria
Andrews, who is in the process of writing her autobiography to be published later this year, began her career as a vaudeville performer in London.
“Many of my fans don’t realize that I began my career in vaudeville,” Andrews says. “Those were wonderful years touring around England. I met some of the most amazing people, many of whom had a profound impact on my singing career.”
Julie Andrews with daughter Emma Walton Hamilton.
She made her Broadway debut in 1954 at the age of 19 and went on to star in many popular musicals, including Camelot and My Fair Lady. Andrews was later cast in a multitude of stage, TV, and movie roles, including her Oscar-winning role in Mary Poppins. She has also starred in theatrical films such as The Sound of Music, Victor/Victoria, 10, Thoroughly Modern Millie, and The Princess Diaries.
Forty-three years after the release of Mary Poppins, Andrews continues to be a favorite actress of children around the world. In May, she will once again provide the voice of Queen Lillian in Shrek 3, much to the delight of her seven grandchildren.
“Knowing their grandma as Mary Poppins and a star of Shrek rates me very highly in their eyes,” says Andrews with a laugh. “I think they are more impressed by my role in the Shrek films than in the body of work behind it.”
The Pen is Mightier than the Voice
Collaborating with her daughter Emma Walton Hamilton, Andrews has also penned over 20 children’s books, including Mandy, The Last of the Really Great Whangdoodles, Dumpy’s Friends on the Farm, and Dumpy at School. Their most recent book, The Great American Mousical (Harper Collins, 2006) gives young readers a behind-the-scenes peek at the theater world through the eyes of a mouse. Andrews is a staunch believer in promoting literacy among children and likes to read stories to her own grandchildren when they come to visit.
“Reading meant so much to me as a child,” she says. “So many children today rely on television and electronic media for entertainment, but they don’t require a child to use their imagination. It’s not a substitute for reading.”
Andrews says she is intrigued by the idea of writing a children’s book on how children can cope with a family member who has a neurological disease such as Huntington’s.
“I would love to write a book that could engage children and talk to them about family illness,” she says. “I know there aren’t a lot of books for children that deal with illness and loss.”
Embracing the Future
Not surprisingly, another one of Andrews’ great loves is the theater. Two years ago, her daughter, Emma, one of her five grown children, persuaded her to return to the theater to direct a production of The Boyfriend, the musical that first brought Andrews to Broadway in 1954.
“I think the transition from actor to director is a natural progression,” Andrews says. “It’s also a lovely way to pass along many of the acting techniques I’ve learned along the way.”
For someone who has performed in front of audiences for years, Andrews is refreshingly honest about her nervousness over accepting the American Academy of Neurology Public Leadership Award.
“It’s a little intimidating to think about addressing a roomful of neurologists and other medical experts who know far more about the disease than I do,” she says with a smile. “But I’m happy to help the Wexlers spread the word on their important organization, and I wouldn’t be surprised if the Hereditary Disease Foundation discovers a cure for Huntington’s in the near future.”
Five British celebrities championing rare diseases
The 29th of February is Rare Disease Day, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
To get behind the movement, we’re looking at five British celebrities who are using their status to champion rare diseases.
If you’re looking for a celebrity to support your cause, we can help. Our Wealth Intelligence Database contains information about over 270,000 high-net-worth and well-connected individuals based in the UK and is updated daily.
Jenny Agutter OBE – Cystic Fibrosis Trust
Star of The Railway Children and Call the Midwife, Jenny Agutter is a British actress using her status for good. She supports several charities, including the Cystic Fibrosis Trust, the only UK-wide charity uniting people to stop cystic fibrosis. Agutter has a personal connection to the cause as her niece and great-nephew live with the condition.
A 2014 episode of Call the Midwife focused on cystic fibrosis on Agutter’s suggestion.
George Rainsford – The Huntington’s Disease Association (HDA)
Another Call the Midwife star raising awareness for rare diseases, George Rainsford has been a patron of the Huntington’s Disease Association (HDA) since 2021.
When Rainsford’s character on Casualty was diagnosed with Huntington’s, he worked closely with the HDA to fact-check the storyline. Through the charity, he met people living with the disease and their families. Inspired by the stories they shared, he took on an ultra-marathon to fundraise for the HDA and became a patron on its 50th anniversary.
Coleen Rooney – Jeans for Genes
British television star, author and wife of footballer Wayne Rooney, Rooney is a patron of the Alder Hey Children’s Hospital and an ambassador for Jeans for Genes.
Rooney has worked with the annual fundraiser Jeans for Genes for 15 years, which raises awareness of the daily challenges faced by those living with a genetic condition. Her younger sister Rosie had Retts syndrome and passed away from the disease when she was just 14.
Alex Dowsett – Little bleeders
Former British professional road racing cyclist Alex Dowsett is raising awareness for haemophilia. He was diagnosed with the condition at just 18 months old and is the only elite cyclist with the condition.
He set up the charity Little Bleeders to empower young haemophiliacs through sport and movement.
Fay Ripley – Matthew’s Friends
Fay Ripley is a British actress, television presenter, and recipe author. She rose to fame in the 90s when she was nominated for a BAFTA for her role in Cold Feet. Ripley published her first cookbook in 2009 to help people prepare good food for their children.
Ripley is a Patron of the charity Matthew’s Friends, whose mission is to publicise Ketogenic Dietary Therapies and make them more available to all those who should need them.
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