As part of my fancy pants authority duties, I serve on the Board of Trustees for the Foundation for Children with Microcephaly. This makes more sense once you know that Microcephaly and Polymicrogyria are closely related neurological conditions. In fact, the Foundation's mission has been expanded to encompass other related disorders. Sort of a brain monster family reunion.
Anyway, as part of my work on the board, I've been sending out the following email. It occurred to me that the kind of sponsorship that the Foundation is looking for might be of interest to people reading here, rather than just corporations.
This is a good cause, a VERY good cause, and if it sounds like something you think you might be interested in, I hope you'll email me.
My name is Robert Rummel-Hudson, and I'm the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008). I'm also a member of the Board of Trustees for the Foundation for Children with Microcephaly, a nonprofit organization dedicated to helping children who have been diagnosed with Microcephaly (and other closely-related neurological disorders such as Lissencephaly and Polymicrogyria) to progress, thrive and succeed in life. The organization helps families acquire necessities and services for their children, and is devoted to raising awareness of these under-recognized disorders and participating in the research that may one day bring relief to these children.
Last summer, I was honored to speak on the subject of Augmentative and Alternative Communication at the 2nd Annual Microcephaly Convention. I've presented at a number of different disability and assistive technology conferences in the past several years, but none has affected me quite so deeply as this one. The families I met changed my perspective on my own work and left me filled with a renewed purpose. When I was asked to join the Board of Trustees, I accepted immediately.
The Microcephaly Convention has served as more than a place for families to meet and find support and empathy. Each summer, the leading doctors and researchers in the fields of neurological genetic disorders meet with these families, giving support and often providing answers and insights that have eluded them for years. It presents a unique opportunity for families of children with these neurological disorders. The Foundation for Children with Microcephaly is the only 501(c)(3) nonprofit organization in the United States dedicated to helping children and adults diagnosed with Microcephaly, Polymicrogyria, Lissencephaly and other related neurological disorders
As a nonprofit organization, the Foundation for Children with Microcephaly depends on the generosity of public, private and corporate contributions. I hope that you will recognize the importance of the work being done by the Foundation for Children with Microcephaly and will be interested in helping to sponsor this summer's convention. A financial sponsorship from your company will make a tremendous difference in the lives of families of children afflicted with these neurological disorders.
For the past two summers, this convention has been organized as a labor of love by families who themselves have searched for answers and support. In my own advocacy, I haven't seen anything quite like it, and I hope you'll choose to be a part of our work. Please take a look at the website (www.childrenwithmicro.org) to learn more about the Foundation.
Thank you for your time. I look forward to hearing from you, and I hope you'll choose to join our team.
Trustee, Foundation for Children with Microcephaly