Maine
Spotlight Project:
Southern Maine Down Syndrome Family Network
Families living in Southern Maine who have a child with Down syndrome have benefited greatly from the grassroots efforts of the Southern Maine Down Syndrome Family Network. Visit their website: www.downsyndromemaine.org. The organization began in 2001 as a small group of parents gathering to provide each other support, and has blossomed into a large collection of people sharing a common purpose – to “promote awareness and acceptance of people with Down syndrome in the community, and to provide support and education to member families.” As with all childrearing, taking care of parents is directly related to taking care of children, and the Family Network excels at providing support for parents. From October through May, members meet in each other’s homes on the last Monday of each month at 7 PM. From June through September, they hold family gatherings on the last Sunday of each month, again at various locations. They also have an e-mail group where parents can ask questions and share the benefits of their own experiences.
The Southern Maine Down Syndrome Family Network wants to bring awareness to the issues associated with Down syndrome. One of their projects was to purchase and distribute books about Down syndrome to all of the public libraries in Maine, thus ensuring that no one would find him or herself without some access to information. For seven years they’ve held the Buddy Walk, and last fall’s event in Portland included over 400 walkers! Another event coming up is their First Call Project, in which they hope to inform most if not all health care professionals, case managers and support organizations, of their existence, followed by distribution of packets for parents. “Through these contacts, we hope to provide support and education to families who have a child with Down syndrome, especially in those emotional, and sometimes confusing first few months. It is critical for new parents to have as much information as possible, and all the support that they seek”.
Dr. Wendy Smith, MD, who is a pediatric geneticist in Portland, Maine, feels strongly that this group “deserves some recognition!” We at the NEGC agree and applaud their good work.