8 Notable People With Spinal Muscular Atrophy

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by Wendy Henderson |

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Being diagnosed with spinal muscular atrophy (SMA) does not necessarily mean that you cannot achieve great success and to lead a happy and productive life. We’ve compiled a list of eight people who have the condition who have lived their lives to the full and gone on to be very successful in their chosen fields, based on Wikipedia.

Alexa Dectis

Alexa is an American actress famous for appearing in shows such as The Guiding Light, Sesame Street, and the movie Admissions. Alexa was diagnosed with SMA at 16 months old and has been in a wheelchair since she was two. The 23-year-old from Pennsylvania is also a singer and motivational speaker and an ambassador for the Muscular Dystrophy Association.

Find out about Sylwia and how she has become both a role model and a lingerie model.

Baroness Jane Campbell

This member of the British aristocracy is a fierce campaigner for rights for people with disabilities, having served as the Commissioner of the Equality and Human Rights Commission and  Chair of the Disability Committee. The 59-year-old grew up in Surrey, England and was diagnosed with SMA at the age of 9 months. Her family was told that she would not live past her second birthday. Born into a humble family, it was through her tireless work for disabled people that she was granted a life peerage in 2007 and she became Baroness Campbell of Surbiton.

Find out about Eric Murphy’s ‘amazing life’ journey with SMA here.

Karen Wheeler

American artist, Karen Wheeler, was diagnosed with SMA in early infancy and was not expected to live past the age of one. The 60-year-old is renowned for her artwork, which is done with a technique called layering using a small brush and dry pigment which creates the effect of colored pencils. Each piece of Karen’s artwork takes between 150 and 500 hours to create and she is known for hiding a rose in all of her pieces.

Haley hasn’t let SMA get in the way of accomplishing her dream of working in the fashion industry. 

Kim Tserkezie

Kim Tserkezie is a British television presenter and actress. She is most famous for playing the role of Penny Pocket in the children’s program Balamory. Originally from Newcastle, England, Kim was diagnosed with SMA in early infancy. The 43-year-old also presented topical shows for the BBC called Disability Today and From The Edge.

Meet Chris and find out how he uses computer technology to create amazing comic book superheroes.

Laura Ann Hershey

Laura Ann Hershey was a disability rights activist who was also a poet, public speaker, and journalist. Laura Ann was a poster child for the Jerry Lewis’ Muscular Dystrophy Association but then went on to protest against the organization’s telethons, arguing that the format presented people with muscular dystrophy as pitiful. Hersey was diagnosed with SMA in early childhood and passed away in 2010 at the age of 48.

Meet Joe Akmakjian, a 24-year-old SMA patient who is living independently.

Nicholas D’Agostino

Nicholas D’Agostino is an American writer, radio host and motivational speaker from New Jersey. He and his twin brother, Anthony, were diagnosed with SMA at 18 months old and Nicholas began using a wheelchair at the age of six. The 27-year-old performed his poem Gravity live at the MDA Show of Strength in 2010 which was watched by over 80 million people and raised over $1 million for the Muscular Dystrophy Association.

Find out more about some of the issues young adults with SMA have. 

Pablo Echenique Robba

Pablo Echenique Robba was born in Argentina in 1978 and diagnosed with SMA in infancy. He studied physics at the University of Zaragoza in Spain and later became a member of the European Parliament. The 38-year-old also holds a post at the Spanish National Research Council in Zaragoza.

Find out more about Steve Mikita, who hasn’t let SMA stop him from becoming an assistant attorney general. 


Rob Rensenbrink

Rob Rensenbrink was a Dutch national soccer player who played for Club Brugge and Anderlecht in Belgium in his early career and then played for Portland Timbers and Toulouse in his later career. Rensenbrink is the all-time top scorer of the UEFA Cup Winner’s cup, with a tally of 25 goals. Rensenbrink announced in 2015 that he had been diagnosed with type 4 SMA in 2012.

Learn more about SMA type 3 and 4. Read here.

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