You’ve likely heard of Williams syndrome, a rare genetic condition known for making people exceptionally friendly, musically inclined, and full of life. But did you know many inspiring individuals are thriving with this condition?
Their stories show that while Williams syndrome has challenges, it doesn’t stand in the way of passion and determination.
Allow me to introduce you to 10 famous people with Williams syndrome who are making a significant impact in their own unique ways.
What is Williams Syndrome?
Williams syndrome is a rare genetic condition that happens when a small piece of chromosome 7, containing about 25 to 27 genes, is deleted. This isn’t typically inherited; it’s a random event that occurs during the formation of a sperm or egg cell. According to the Cleveland Clinic, it affects approximately 1 in 10,000 people in the United States.
This genetic deletion leads to a unique mix of traits. Individuals often face developmental delays, learning disabilities, and challenges with visual-spatial tasks like drawing. Heart and blood vessel problems, such as supravalvular aortic stenosis (a narrowing of the aorta), are also common.
However, people with Williams syndrome frequently have remarkable strengths. They often possess strong verbal skills, an affinity for music, and highly social, engaging personalities. Organizations like the Williams Syndrome Association (WSA) provide resources and support for individuals and their families, helping them overcome obstacles and celebrate the unique gifts associated with the condition.
10 Famous People With Williams Syndrome
Let’s take a look at these remarkable individuals.
1. Gabrielle Marion-Rivard
Age: 36 years old.
Famous For: Canadian actress and singer. She won the Canadian Screen Award for Best Actress in 2014.
Gabrielle Marion-Rivard is a celebrated Canadian actress, best known for her lead role in the 2013 film ‘Gabrielle’. In the movie, she plays a talented young woman with Williams syndrome who seeks independence and love, a role that mirrors her own life.
The film’s director, Louise Archambault, discovered Marion-Rivard at Les Muses: Centre des arts de la scène, a performing arts school for people with disabilities. The film was praised for its authentic casting, integrating many special needs actors with professional actors to create a powerful and realistic story.
2. Ben (Big Red) Monkaba
Age: 27 years old.
Famous For: Musician, drummer, vocalist, and Shrine Clown.
Ben Monkaba, affectionately known as “Big Red,” is a multi-talented performer with a lifelong dream of becoming a Shrine Clown. He is a musician, drummer, and vocalist known for his joyful and outgoing personality, which shines through in his work as an entertainer.
He spent years training to become a shrine clown, which involves learning everything from magic tricks to juggling. Ben uses his talents to spread positivity, embodying the incredibly social nature often associated with Williams syndrome. His dedication led him to clown with the Melha Shrine Clowns in Springfield, MA, where he was called an inspiration.
3. Gloria Lenhoff
Age: 69 years old.
Famous For: Soprano singer with a massive repertoire.
Gloria Lenhoff is an exceptionally talented soprano singer with Williams syndrome, whose musical abilities are nothing short of astonishing. Her story was featured in the book “The Strangest Song,” which details her life and her family’s journey.
She has a reported repertoire of over 2,000 songs in more than 30 languages, all of which she can sing with perfect pitch and accent. This incredible talent has led her to collaborate with world-famous symphonies and even the band Aerosmith. Conductors, like David Amos of the San Diego Master Chorale, have praised her not just for her accuracy but for her profound musicality and enthusiasm.
4. Amy Kotch
Age: 46 years old.
Famous For: Featured in KLRU-TV’s “Women and Girls Lead” series.
Amy Kotch is an inspiring woman making a difference in the healthcare industry in Austin, Texas. Her story gained prominence when she was featured in a local PBS TV series called “Women and Girls Lead” for her dedication and hard work.
Amy is a graduate of Project SEARCH, a program created at Cincinnati Children’s Hospital and Medical Center that helps individuals with developmental disabilities secure employment. She works as a floor supply specialist at the Seton Medical Center, where her bubbly personality and strong work ethic have made her a beloved member of the team.
5. Lauren Potter
Age: 34 years old.
Famous For: American actress and advocate.
Many people recognize Lauren Potter from the hit TV show *Glee*, where she played the fan-favorite character Becky Jackson from 2009 to 2015. Her impeccable comedic timing and witty one-liners made Becky an iconic and relatable part of the series.
Beyond her acting career, Lauren is a passionate advocate for individuals with disabilities. She uses her platform to educate the public and push for greater inclusion in the entertainment industry and beyond. Her work has helped to change perceptions and create more opportunities for others.
6. Jeremy Vest
Age: In his early 40s.
Famous For: Actor and drummer.
Jeremy Vest is a talented actor and drummer who has appeared on MTV’s “How’s Your News?” as both a reporter and the band’s drummer. His charismatic personality made him a natural on camera, where he interviewed figures like Ben Affleck and Karl Rove.
Vest also starred as the lead in the Western film *Bulletproof Jackson*, a role documented in the film *Becoming Bulletproof*. A review in The Washington Post praised him as “a born performer with an ebullient and guileless smile.” Jeremy is a graduate of the Berkshire Hills Music Academy and has been playing drums since he was six years old.
7. Teddy Tenenbaum
Age: 47 years old.
Famous For: Emmy Award-winning writer and director.
Teddy Tenenbaum is a successful writer, director, and producer in Hollywood. He is known for his work on the television series *Ghost Whisperer* and as a writer for the video game *Resident Evil: Village*.
Despite the spatial reasoning challenges often associated with Williams syndrome, Tenenbaum has built a remarkable career in a highly competitive field. He is also a talented musician and composer, showcasing the strong affinity for music common among individuals with the condition. He openly shares his story to inspire others and advocate for neurodiversity in the film industry.
8. Elias Sher
Age: Young Adult.
Famous For: Artist and advocate.
Elias Sher is a gifted artist whose work has been featured in galleries and has gained him national attention. He specializes in intricate line drawings, often of animals and cityscapes, which reflect his unique perspective and incredible focus.
His art provides a powerful outlet for expression and has become a platform for advocacy. Elias and his family work to raise awareness about Williams syndrome, using his artistic talent to demonstrate the amazing abilities that can flourish with the right support and encouragement.
9. Lucy Wakelin
Age: In her early 20s.
Famous For: Public speaker and advocate in the UK.
Lucy Wakelin has emerged as a powerful voice for people with disabilities in the United Kingdom. She is an accomplished public speaker who shares her experiences living with Williams syndrome to educate healthcare professionals, students, and the general public.
She has spoken at major events and conferences, aiming to improve services and challenge misconceptions. Lucy’s confidence and eloquence make her an incredible advocate, showing how personal stories can drive meaningful change.
10. Madison Cauthon
Age: Young Adult.
Famous For: Musician and college student.
Madison Cauthon is a talented musician and vocalist who has performed at numerous events for the Williams Syndrome Association. Her passion for music is evident in every performance, and she uses her gift to connect with and inspire her audience.
In addition to her musical pursuits, Madison is a dedicated college student. Her journey highlights the importance of inclusive educational opportunities and the potential for individuals with Williams syndrome to pursue higher education and achieve their academic goals.
Frequently Asked Questions (FAQs)
1. What are the common physical features of Williams syndrome?
Individuals with Williams syndrome often share distinct facial features, which can include a broad forehead, puffiness around the eyes, a short or upturned nose, full cheeks, and a wide mouth with prominent lips. Dental issues, such as small or widely spaced teeth, are also common.
2. Is Williams syndrome inherited?
Most cases of Williams syndrome are not inherited. The genetic deletion usually happens as a random event during the creation of egg or sperm cells. However, an individual with Williams syndrome has a 50% chance of passing the condition on to their children.
3. What is the life expectancy for someone with Williams syndrome?
Most people with Williams syndrome have a normal life expectancy. However, it can be reduced by complications, particularly serious cardiovascular problems. With proper medical care and early intervention, many individuals live long, fulfilling lives.
Takeaways
After learning about these 10 remarkable individuals, it’s clear that Williams syndrome didn’t prevent them from pursuing their dreams and making a significant impact. These famous people with Williams syndrome embraced their unique traits, such as their outgoing personalities and musical talents, and used them to their advantage.
Their stories show that they don’t see their condition as a limitation but as a celebrated part of who they are.
They are a true inspiration to us all.







