Meg Hefner has been named the recipient of the 2022 Marcus Velázquez Service Award!
Meg Hefner is a genetic counselor with more than 35 years of experience with CHARGE syndrome. She co-founded the CHARGE Syndrome Foundation in 1993 and has been a member of the Missouri Deaf-Blind Advisory Board since 2005. Meg is one of the editors of the book CHARGE Syndrome; the first edition was released in 2010 and the second edition in 2021. n the forward Foreword to the 2021 edition, Dr. Daniel Choo writes that Meg is a “world-renowned expert on CHARGE.”.
The Marcus Velázquez Service Award is presented by the Deaf-Blind Advisory Committee to an individual or organization that has made a significant contribution to improving the quality of life for individuals with deaf-blindness and their families in the state of Missouri.
Born in 1970, Marcus Velázquez was deaf and had a degenerative eye disease, retinitis pigmentosa that would eventually leave him severely blind — both conditions are a part of a disorder called Usher’s Syndrome. He also had autism and Tourette’s Syndrome. All of this never stopped him. He wanted to do all the things everyone else did. So, he learned to swim, went to church and even tried to drive the family car (thankfully, no one was hurt). Among his other solo adventures: Riding Chicago’s EL Train and taking a bus in Mexico to a mall where he could get a McDonald’s “hamburguesa” (burger). He moved through the world with his cane in hand and a fanny pack fastened to his waist, filled with the essentials for adventure and independence: His ID, money and a reporter-sized notebook and pen to communicate with the non-deaf world. He preferred to express his thoughts through tactile sign language.
Marcus learned many of these life skills during the two years he spent learning at Helen Keller National Center (HKNC) in Sands Point, New York. He went to HKNC after graduating from Missouri School for the Blind, an institution where his teachers nurtured his desire for knowledge and independence. His education and growth was made possible through the efforts of the Missouri DeafBlind Task Force, his family, and countless advocates who believed in Marcus. Upon his return from HKNC, Marcus lived and worked independently in St. Louis. At 26, Marcus learned he had cancer. He died two months later, on July 4, 1997.
