Would you be willing to e-mail or write your Governor and your State Legislators asking them to please proclaim the month of May to be "Dandy-Walker Syndrome and Hydrocephalus Awareness Month" in your state?

This is a pretty easy ask since it isn't controversial and doesn't cost anything. What it does do is help raise awareness that helps us turn up the proverbial squeaky wheel volume for Dandy-Walker. This in turn raises scientific interest because scientists will begin to submit grant proposals to study Dandy-Walker further since funding is more likely for conditions with a loud voice.

Here is the draft text for the proclamation.

AN ACT concerning State Government – Commemorative Month – Dandy-Walker Syndrome and Hydrocephalus Awareness Month

FOR the purpose of requiring the Governor to proclaim the month of May to be "Dandy-Walker Syndrome and Hydrocephalus Awareness Month".

Preamble
WHEREAS, the Dandy-Walker Alliance, Inc. is the only national organization focusing on promoting the public good and to support education, informational activities and non-partisan research that increases public awareness of the congenital birth defect known as Dandy-Walker Syndrome; and

WHEREAS, Dandy-Walker syndrome is the most common congenital malformation of the cerebellum and its causes are largely unknown. Between 10,000 and 40,000 people have Dandy-Walker syndrome in the United States; and

WHEREAS, the incidence of Dandy-Walker syndrome is at least 1 case per every 25,000 to 35,000 live births, however this is likely a significant underestimate because of difficulties diagnosing the syndrome and may affect as many as 1 in 5000 live born infants. Patients with Dandy-Walker syndrome present with developmental delay, enlarged head circumference, or signs and symptoms of hydrocephalus; and

WHEREAS, All Americans should learn about Dandy-Walker Syndrome and hydrocephalus and recognize the achievements of all Americans with a disability, the important role that disabled Americans played throughout the entire history of the United States, and the scientific, literary, and social impact of disabled Americans on our world today.

WHEREAS, The General Assembly believes that the month of May should be commemorated as the Dandy-Walker Syndrome and Hydrocephalus Awareness Month.

Any contacts you have in other states willing to e-mail/write to their elected officials would be great if you wanted to network with this. Please let us know if you have any questions.