Thomas (Tom) Exler is based in his hometown of Pittsburgh, Pennsylvania, USA, and is an internationally-renowned advocate for bladder extrophy, rare disease and disability. Tom has been invited to present to audiences around the world, including Brazil, Canada, Spain, UK, Iceland, Australia, Germany and more. He was born in 1965 with the birth defect of Bladder Exstrophy. At the age of 4 his mother and surgeon founded the first organization in the World for parents of ostomy children, called the Tri-State Ostomy Society. In 1976 at the age of 10, he spoke at the United Ostomy Association (UOA) Conference held in Pittsburgh. In 1992 he joined the UOA Youth Rally as a counselor (1992-2003), a national camp for teenagers with intestinal or urinary diversions or ostomies, and in 1999-2002 he was a counselor at the Crohn’s and Colitis Foundation of America camp for 8–17-year-olds.

Tom represented the United States at the International Ostomy Association 20/40 Focus at the 1999 Copenhagen Denmark and 2001 Hamilton, Ontario, Canada. In 1996, he was asked to write a section of the book “Living with Bladder Exstrophy”. In 2001, he founded the United Ostomy Association Young Adult Conference and Network and the United Ostomy Association Teen Network. In 2003 he was asked to be a presenter at the 1st International Exstrophy Conference in Milwaukee, Wisconsin, and later in the year he gave a speech to the Icelandic Ostomy Association in Reykjavik, Iceland. Then in 2006 he joined the Association for the Bladder Exstrophy Community Board as Vice President. In 2008 he was asked to speech to the German Bladder Exstrophy & Epispadias Association (Selbsthilfegruppe Blasenekstrophie / Epispadie e.V.) near Fulda, Germany.

In 2010 Tom was asked to make multi-presentation at the BEECH Australian Community Conference, and he gave out the first International Courage to Shine™ Award. Then in 2011 he was asked to go to England for Breakaway, a camp for families with a child up to 18 years of age, with an intestinal or urinary diversion, and In 2012 he was asked to go to Spain for the ASEXVE (Asociación española de Extrofia Vesical, Cloacal y Epispadias) Medical Conference in Avila, Spain.

In 2012 Tom joined the board of Jamie’s Dream Team, a dream granting organization for adults and children with life-threatening illness based in Pittsburgh, PA. In 2015 he was awarded the Jefferson Award which is the Nobel Prizes for volunteerism, and was nominated for the 2015 RARE Champions of Hope -Advocacy this is offered by Global Genes.  He is also the Founder of Courage to Shine™, Vice President of
the Association for the Bladder Exstrophy Children, board member of the Pittsburgh Ostomy Society and board member and volunteer of Jamie’s Dream Team.