Last Updated January 23, 2013 

Famous People & Spina Bifida

Names of individuals in alphabetical order by last name.

Corbin Allred
Jade Calegory
Roald Dahl
Mayor Richard M. Daley
Al Davison
Jean Driscol
Guro Fjellanger
Aaron Fotheringham
Jay Bradford Fowler
Sebastian Garcia-Grout
Gilbert M. Gaul

Dame Tanni Grey-Thompson
Lawrence Gwozdz

Elvis Grbac
Blaine Harrison

Robert Hensel
John Holter
Mark "Kray-z legz" Humphries
Frida Kahlo

Boris Kodjoe & Nicole Ari Parker

Jim LeBrecht
Tatyana McFadden
Mike McGee
John Cougar Mellencamp
Paul Monette
Karin Muraszko
Rene Kirby
Bruce Payne
David Proud
Van Smith
Jeffrey Tate
Daniel Vance
Deontay Wilder
Hank Williams, Sr.
Lucinda Williams
Miller Williams
Buddy Winnett
Judy Woodruff
Debbie Wooten
Lorna Wreford


Entries listed as added - oldest entry listed first

Hank Williams, Sr.—Singer and Songwriter

Hank Williams
Williams was one of the most influential country musicians of all time, both as a singer and as a composer. He suffered severe back pain throughout his short life.  Sources cite him as having spina bifida or spina bifida occulta.  An operation in 1951 aimed at relieving his constant pain was not successful.  Addicted to alcohol and morphine, Williams died at the age of 29.

References:

Judy WoodruffCNN Co-anchor

Judy Woodruff

Judy Woodruff has a son who has spina bifida. In interviews, Woodruff shares that Jeffrey was born in 1981 with a mild case of spina bifida, but during routine surgery at age 16 developed complications which resulted in brain damage. She has been instrumental in the annual SBAA Celebrity Roast which raises funds for the Spina Bifida Association of America. Judy's husband is Al Hunt.

References:

 

John Cougar Mellencamp—Singer & Song Writer

John Mellencamp

In the interview from the Special Olympics, he also said that two other people were born at the same time he was with spina bifida. He said he always saw a particular girl at the basketball games who used a wheelchair. He asked someone who it was and they told him that she was one of the others born with spina bifida.

John realized it could have been him in that wheelchair and that is one of the main reasons he did a song for the Special Olympics. Most of those with spina bifida end up like the girl in the wheelchair and are not as lucky as John.

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Buddy Winnett—Horse Trainer & Jockey


Buddy Winnett is a former horse jockey and trainer who is legally blind due to macular degeneration. Born in West Virginia to a large family, Winnett was diagnosed with spina bifida, and wasn't expected to live past the age of 6.

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Frida KahloArtist

(1907-1954) It is believed that Mexican artist Frida Kahlo may have had spina bifida, along with other disabilities, including residual damage from polio and injuries suffered in a bus accident.

"Feet, why do I need them if I have wings to fly?"
― Frida Kahlo


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Bruce PayneActor

Bruce PayneBritish actor has a mild form of spina bifida. Learn more about his career on his page at IMDB.

 

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Richard M. DaleyMayor of Chicago

Mayor Daley had a son named Kevin who had spina bifida. Kevin died in 1981.

Elvis GrbacQuarterback

Elvis GrbacElvis has a young son who has spina bifida. During his career he was a starting quarterback for the San Francisco 49ers, Kansas City Chiefs, and Baltimore Ravens of the National Football League. In 1996, Grbac was famously slammed by San Francisco Mayor Willie Brown. Brown criticized Grbac's costly turnovers against the Dallas Cowboys on Sunday and called the 49ers' second-string quarterback an ''embarrassment to humankind.'' Grbac later said he was not prepared to play because he has been worried about his 9-month-old son, Jack, who has spina bifida, recently underwent surgery. The mayor later apologized.

Jean DriscollWheelchair Racer & Olympian


Jean Driscoll Jean was born with spina bifida. She is a seven-time winner of the Boston Marathon, setting world records in five of those races. She set a world record in the 10-kilometer race last year, and won silver medals in 800-meter events at the 1992 and 1996 Olympics, as well as two gold medals, one silver and one bronze at the 1996 Paralympics.

In 2000, Jean was voted #25 of the Top 100 Female Athletes of the 20th century by Sports Illustrated for Women, a list topped by the Olympic track and field sensation, Jackie Joyner-Kersee. 


Jay Bradford FowlerPoet


Jay Bradford Fowler - PoetJay Bradford Fowler Jr., was an award-winning poet who was the author of 17 books of verse. He was born with spina bifida, and had been treated for degenerative arthritis throughout the 1990s. He had undergone at least 16 major operations over the years and had been bedridden the past eight years.

The first of his 17 books of poetry, "Writing Down the Light," was published in 1987. A book of his collected poems, "Caged Angel," was published in 1997. His last book, "Outrageous Asylum, Sonnets from the Nursing Home," appeared in 1998.

Paul Monette—Author

Monette was the older of two boys. His brother, Robert, was born with spina bifida.  Monette became Robert's protector and champion. He also decided he would need to live an exemplary life to compensate for his brother's illness.

"Paul Monette: The Brink of Summer's End" is a poignant, illuminating documentary on Paul Monette, the National Book Award-winning author, who wrote with eloquence and fire about the devastation of homophobia and AIDS, the disease that left him twice a widower and ended his own life in 1995 at age 49.

Jim LeBrechtSound Designer

Jim LeBrecht Jim was born with spina bifida. He is also the co-author (with composer Deena Kaye) of Sound and Music for the Theatre: the Art and Technique of Design, and has been a visiting professor at Yale University. LeBrecht has won numerous awards, including the San Francisco Bay Area Drama Critics' Circle Award for Outstanding Sound Design, which might as well be renamed in his honor, since he's won it five times.

 

 

Rene KirbyActor

Rene Kirby Best known for his role in Shallow Hal, Rene (pronounced 'Reen') Kirby was born in Vermont in 1955. He also appeared in the film "Stuck On You" with Matt Damon, Greg Kinnear and Eva Mendes, and the HBO series Carnivàle.

 

Van Smith—Theatrical Make-Up Artist

Van Smith

Born in Florida in 1945, Walter Avant Smith Jr., showed an early interest in art, but lacked dexterity due to stiffness in his hands as a result of spina bifida. But he parlayed that interest into a career with film-maker John Waters after earning a degree in fashion arts from the Maryland Institute College of Art. Waters referred to Smith as the resident "ugly expert". He designed the pink satin ball gown adorned with huge cockroaches worn by Ricki Lake in Mr. Waters’s 1988 film, “Hairspray” and Divine's trademark look.

He also worked as an illustrator at Women's Wear Daily and other publications in New York.

He died of a heart attack in December of 2006.

References:

Gilbert M. GaulTwo-time Pulitzer Prize Winning Journalist

Gil is a 1979 Pulitzer Prize winner for Investigative Reporting and has written for the Philadelphia Inquirer and Washington Post. He has a son, Cary, who has spina bifida. Gil profiled his son's early years in the book "Giant Steps" which is currently out-of-print but can sometimes be found at used book stores and online.

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Robert HenselPoet

Robert was born with spina bifida. He an International poet-writer  with well over 900 publications published worldwide. In 2000, Robert was nominated as one of the best poets of the 20th Century.  Robert is also a Guinness & Ripley's World Record Holder for the longest non stop wheelie in a wheelchair, covering a total distance of 6.178 miles. Visit his web page listed below.

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Dame Tanni Grey-ThompsonWheelchair Racer & Paralympian

TanniBorn with spina bifida, Grey-Thompson's full name is Carys Davina but she is better known by her moniker, "Tanni". Tanni uses a wheelchair, and is considered to be one of the most successful disabled athletes in the United Kingdom. Thompson competes in events over a wide range of distances, first competing in the 100 m at the Junior National Games for Wales in 1984. Over her career to date, she has won a total of 16 Paralympic medals, including 11 golds, held over 30 world records, and won the London Marathon six times between 1997 and 2002. In 2002, she was made a Dame of the British Empire by Queen Elizabeth.

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Deontay Wilder—Boxer

Deontay WilderA rising star in the boxing world, Deontay is has a daughter, Naiyea, who was born with spina bifida in 2005. In May of 2007, he won heavyweight belt for the 2007 Golden Gloves National Tournament of Championship. At that time, he had 16 fights under his belt. Dave Godber, is the head coach of Deontay's team. “A man with 16 fights winning this championship is nothing beyond unbelievable,” Godber said. “That very rarely happens. This is something good to happen in a community.” Members of Deontay's team chanted Naiyea's name during the Golden Glove championship bout. His work earned him a spot on the 2008 Olympic team.

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Daniel VanceJournalist / Columnist
Daniel Vance

Writer of the self-syndicated column Disabilities, Daniel Vance is raising the profile of people with disabilities, bringing awareness and understanding of disability issues to the general public. His column has been published in more than 260 newspapers. Vance is the editor of Connect Business Magazine and author/co-author of ten books. Daniel is a Licensed Professional Counselor and National Certified Counselor. He is also the father of Abigail, a 14-year-old with spina bifida. His wife Carolyn is one of 150 master knitters in the world.

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Boris Kodjoe & Nicole Ari Parker—Actors

Family Actors Boris and Nicole have two children, daughter Sophie Tei Naaki Lee and son Nicolas Neruda. Sophie was born with spina bifida.

Austrian-born actor Boris Kodjoe is well-known for his role on the Showtime series "Soul Food" where he met his wife, fellow actor Nicole Parker. He's also done several movies, including the newest installment in the "Starship Trooper" series. He also had a role in "Love and Basketball" and starred in "All About Us." He was named to People magazine's "50 Most Beautiful People in the World 2002".

Nichole Ari Parker appeared in several critically-acclaimed independent films including The Incredibly True Adventure of Two Girls in Love, Boogie Nights, 200 Cigarettes, and the 1999 Sundance Film Festival winner The Adventures of Sebastian Cole.

Boris and Nicole have started a charity to raise money for the The Xiao Procedure for Children with Spina Bifida.

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Al Davison—Cartoonist

Al Davison

Al Davison is an English cartoonist who was born with spina bifida — doctors thought he would never walk — and his graphic novel THE SPIRAL CAGE chronicled growing up and struggling to be accepted as a whole person. Despite his handicap he’s studied martial arts for 30 years, and gained a couple of black belts. Here’s a video of Davison putting on an MA demonstration he recently put up on his MySpace page. He also runs a comics shop in Coventry called the Astral Gypsy which just celebrated its first anniversary.

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Blaine Harrison—Musician

Blaine Harrison

Blaine Harrison is the lead singer of the British group The Mystery Jets, a four-piece British indie band. Blaine has spina bifida and uses crutches to get around. The band recently cancelled a string of shows after Blaine developed pressure sores on his feet while in a hot tub. He has a funky hairstyle that others are trying to copy.

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Mike McGee—Slam Poet

Mike McGee

Born January 12, 197 6 in Fort Campbell, Kentucky. McGee currently lives in San Jose California where he started his career in spoken word, poetry slam and performance poetry in 1998.

Awards:

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David Proud—Actor

David Proud

British actor, best known for his work on the British soap, Eastenders where he played Oxford student Adam Best, son of Minty’s girlfriend Manda.

David was born March 14, 1983 in Cambridge, England.

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Jade Calegory—Actor

Jade Calegory

Jade starred in the movie "Mac and Me" , a movie about an extraterrestrial, separated from his family and stranded on Earth, and a boy who uses a wheelchair. Jade was born April 12, 1976.

Quote: "You shouldn't dwell on what you can't do. Focus on what you can do. And the more you see what you can do, the more you come to realize there are no limitations in life."

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Jeffrey Tate—Conductor

Jeffrey Tate

Born in 1943 in Salisbury, England. Studies medicine at Cambridge University before switching to a career in music, which begins with schooling at the London Opera Center. Becomes principal assistant at Covent Garden in 1977. Makes regular symphonic appearances in Berlin, Dresden, Los Angeles and Boston.

Awarded Knight Commander of the British Empire and French Chevalier des Arts et des Lettres.

Born: April 28, 1943 in Salisbury, Wiltshire, England Biography

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Aaron Fotheringham—Wheelchair Athlete

Aaron

Aaron is an extreme wheelchair athlete who performs tricks adapted from skateboarding and BMX. In 2005, he performed the first wheelchair back flip.

 

 

Lawrence Gwozdz—Saxophonist

As professor of saxophone at Southern Miss, he has established a studio that continues to receive worldwide attention. His student soloists, quartets and saxophone chamber orchestra perform in major cities, and are frequent winners of competitions.

Having been born with spina bifida, Dr. Gwozdz also is an advocate for arts for the handicapped and Very Special Arts. He also is active in the Campus Crusade for Christ’s Christian Faculty/Staff Forum. (from the USM School of Music website biography)

Lucinda Williams—Singer and Song Writer

Lucinda WilliamsLucinda Williams is is an American rock, folk, and country music singer and songwriter. Williams was born in 1953 in Lake Charles, Louisiana. She grew up listening to Delta Blues and Hank Williams. Her father is poet Miller Williams. Mary Chapin Carpenter recorded Williams' song "Passionate Kisses" and won a grammy for Best Country Song of 1994.

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Miller Williams—Poet

Miller Williams

Read his poem, "Of History and Hope" at President Bill Clinton's second inauguration.

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Tatyana McFadden—Paralympian & Activist

Tatyana McFadden"After her family introduced Tatyana to swimming and from there she became “hooked” on sports and today is recognized as an elite athlete holding many USA and international records. Concerned that young people with disabilities did not have full access to high school sports, Tatyana was the plaintiff in a federal lawsuit which mandates public schools to provide access to sports for disabled students. Her action resulted in landmark legislation in Maryland - the first law America to allow and encourage students with disabilities to participate in sports in their schools; now a model for other states." (source: Official Website).

 

John Holter—Mechanic/Machinist

John Holter

"In 1956, John and Mary Holter were shattered when their son, Casey, was born with spina bifida and hydrocephalus (water on the brain). Doctors told the Holters that the opening of the spine on their son’s back could be repaired but that they had not yet found a successful way to manage the buildup of spinal fluid in Casey’s brain, a process that would eventually kill him. Mr. Holter, a self-described “mechanic” who worked in a lock company’s research lab, decided to tackle the fluid problem. He developed a small, one-way valve that he thought would allow the brain fluid to drain and save his son’s life. He prevailed upon The Holtersthe child’s neurosurgeon, Eugene Spitz, to use the untested device, which was made of silicone, a new material. Casey lived an unexpected 5 years before dying from other causes. The Holter valve made drainage or shunting of cerebrospinal fluid a practical reality. Today, after years of technical modification and adjustment in clinical procedures, about 30,000 shunt procedures are done in the United States each year. The life expectancy of children with hydrocephalus is now measured in decades, not years, and hydrocephalus is no longer the end of a family’s dreams."

Sebastian Garcia-Grout—Pro Golfer

Sebi GarciaSebi Garcia-Grout of Spain recently made his pro golf debut. According to PGA Tour.com, 'The 28-year-old from Mallorca was born with a spinal deformity and cannot swing the club with the full freedom usually demanded by the sport at the highest level. Yet, Garcia clearly has huge natural talent as in 2009, while playing an event on Spain's National pro tour, he shot a 58 around the Polaris course in Murcia, though off preferred lies. "My back is a problem and I have to take care of it," Garcia said. "And I was nervous playing at this level for the first time, so I was really pleased with that score."' Although his full name is Sebastian Garcia-Grout, he often goes by Sebi Garcia or Sebi Garcia-Grout.

Lorna Wreford - Painter

LornaLorna Wreford is a 73 year-old, multitalented teacher, artist, and writer from Mississauga, Ontario, Canada. Lorna was born with spina bifida and has spent much of her life breaking down barriers that have kept people with disabilities from being active and contributing members of their community. Graduating from college in the late 1960s, Wreford had a dream to teach English and Business classes to secondary students.

"I met a solid wall that would take almost thirty-two years to breach. Teachers on braces and crutches, it was obvious, were not acceptable in the education system; wheelchairs definitely could not be accommodated."

She recently completed 12 paintings for a calendar fundraiser for the Spina Bifida & Hydrocephalus Association of Ontario. See link below.

 

Guro Fjellanger - Civil Rights Activist

Guro FjellangerGuro Fjellanger of Norway, is a civil rights activist and politician. She currently does consulting work around environment issues and universal design.

Guro Fjellanger was born with spina bifida. Although she walked as a youngster, she now uses a wheelchair exclusively. When hired as Minister of the Environment she became the first Norwegian government minister with a disability. In 2007 she notably won a lawsuit against the state, who in 2004 had refused to grant her industrial insurance.

 

 

Dr. Karin Muraszko

Dr. Karin Muraszko is a a pediatric neurosurgeon at the CS Mott Children's Hospital and the Chair of the University of Michigan Neurosurgery Department. She was the first woman to chair an acedemic department of neurosurgery.

Karin MuraszkoShe was born on June 19, 1955 in Jersey City, New Jersey. She graduated with a B.S. at Yale University in 1977 with a major in history and biology. Muraszko obtained her medical degree from Columbia University College of Physicians and Surgeons in 1981. She did her neurosurgical and pediatric training at Columbia Presbyterian Medical Center which she completed in 1988.

She is the medical director of "Project Shunt", the neurosurgery component of an annual medical mission by the Michigan, Ohio, chapter of the medical charity "Healing the Children" to Guatemala, which has one of the highest incidences of spina bifida in the world.

"Neurosurgery deals with the soul of an individual. The organ we deal with encompasses all we consider a person to be. It's their vision, their speech, their ability to think, to hear, to touch, to taste, to feel and to express themselves. It's what makes you all the things you are as a person." Karin Muraszko, M.D.

 

 

Corbin Allred - Actor

Corbin Allred is an actor known for movie "Saints & Soilders" and the TV series "Teen Angel" plus many guest starring roles on populat television programs from "Bones" to "ER" to "CSI" and "Boston Public".

His third child, daughter Lily, was born on 6/29/12. Lily was not considered a candidate for fetal surgery due to a history of premature births. You can read more about Lily and family at their blog below:




Roald Dahl - Writer & Inventor

Roald Dahl was a British novelist, short story writer, poet, fighter pilot and screenwriter. Born in Wales to Norwegian parents, he served in the British Royal Air Force during World War II, in which he became a flying ace and intelligence officer, rising to the rank of Wing Commander. Dahl has been referred to as "one of the greatest storytellers for children of the 20th century". Some of his notable works include James and the Giant Peach, Charlie and the Chocolate Factory, Matilda, The Witches, Fantastic Mr Fox, The Twits, George's Marvellous Medicine and The BFG.

Patricia Neal and Theo Dahl - post accidentHe married actress Patricia Neal. Together they had five children, including Theo, who as a 4 month old in 1960, was severely injured when his baby carriage was struck by a taxicab in New York City. For a time, he suffered from hydrocephalus. Roald became tired of frequent shunt malfunctions and worked with experts in London and New York and helped develop what became known as the "Wade-Dahl-Till" (or WDT) valve, a device to alleviate the condition. Although the vavle soon became obsolete as better shunts were developed, his story once again illustrates the far-reaching impacts parents and family members can have.

 

 

Mark "Kray-z Legz" Humphries - Rapper

Kray-z Legs

Mark Antony Humphries (aka Kray-z Legz) was born in Taunton in the United Kingdom on March 11th, 1989. Starting his musical passion at 4 years old learning to play violin then moving on to Drums, Keyboard, Guitar, Mixing and at 16 started writing lyrics an working on his solo career in the hip hop industry.

His style is that of underground hip hop and 'ol skool'. This comes from his upbringing born and raised in Glastonbury, Somerset. He said when asked " I get all my inspiration from my own life experiences and also sometimes its just a way to have some fun and help peepz have a good stomp."

Debbie Wooten - Comedian

Debbie Wooten

Debbie Wooten was born in South Chicago with spina bifida, and developed polio as an infant. Isolated by color and disability, Debbie met the Rev. Dr. Martin Luther King Jr. when she was eight years old, an experience that changed her life. Debbie uses her life struggles and triumphs in her comedic and inspirational presentation in a way that "captivates the room with charm, love and knowledge."

 



Special Thanks to Jolyne W., Mary S., Susan and Julia Grace Collins for their contributions to this page!
It has taken us a great deal of time to compile the information on this page. Please credit the Children and Adults with Spina Bifida web site if you use the information else.

Thanks,
Linda