July 17, 2016: Koolen-Devries Syndrome Awareness Day
WHEREAS, Koolen-deVries Syndrome (KDVS) is a newly discovered and rare genetic condition resulting from the partial loss of or change in one’s chromosome 17 at 17q21.31; and,
WHEREAS, KDVS is estimated to affect 1 in 16,000 people, yet it is expected that it is underdiagnosed and may affect a greater population; and,
WHEREAS, individuals with KDVS often experience medical problems and concerns including but not limited to: learning disabilities, speech delay, muscle weakness (hypotonia), heart/kidney problems, and epilepsy; and,
WHEREAS, while the public is aware of other rare diseases and conditions, most patients affected by KDVS and their families have personally tackled the tasks of researching, educating, fundraising and raising awareness; and,
WHEREAS, the non-profit organization “Supporting Families with Koolen-deVries Syndrome” is dedicated to increasing the education and awareness of this syndrome as well as promoting research for the support and enrichment of individuals living with KDVS as well as their families; and,
NOW, THEREFORE, I, Rick Snyder, governor of Michigan, do hereby proclaim July 17, 2016 as Koolen-deVries Syndrome (KDVS) Awareness Day in Michigan.