ABOUT THE DOWN SYNDROME INFORMATION ALLIANCE

Mission

The Down Syndrome Information Alliance provides support and resources to empower individuals with Down syndrome, their families, and our community.

Vision

We envision a community where people with Down syndrome are empowered, respected as individuals, and accepted as valued participants in neighborhood schools, community activities, and the business world.

Goals

Develop and distribute an informational packet for parents of children with Down syndrome. This would include health, developmental and services guidelines as well as access to resources and support services in the community.

Conduct outreach with local health care and service providers (i.e., therapists) to develop partnerships for educational purposes in the community. Activities might include collaboration on continuing education, participation in existing forums and symposia and development of new educational opportunities that will improve families' ability to access information, services and care for their loved ones with Down syndrome.

Develop a Community Support Network to benefit families affected by Down syndrome. This network will include quarterly meetings that bring together families (parents, grandparents, and children) to provide them with opportunities for support through sharing groups and activities so we can build ties that bond our community together. Educational topics will also be included, based on parent and grandparent feedback.

The History

How it Began….

The Down Syndrome Information Alliance was founded in 2004 by three local families seeking greater access to support, information and services in our community. Richard and Amy Bermudes had four children, their youngest with Down syndrome. The Bermudes family had recently moved to El Dorado Hills from Cincinnati, Ohio, where they were involved with the local Down syndrome group and had enjoyed the educational and social activities offered. Heather and Jorge Prieto have two children, their oldest with Down syndrome. They were leading a monthly support group in Sacramento to connect families with one another. Elaine and Michael Linn have two children, their youngest with Down syndrome. They were becoming involved with national Down syndrome organizations and wanted to bring the benefits of those groups to Sacramento.

Together with Sally Dominguez, whose granddaughter Mya has Down syndrome and Nicole Besoyan, whose daughter Renee has Down syndrome, they formed the Down Syndrome Information Alliance and served as the founding Board of Directors to provide support, education, advocacy and awareness locally.

The DSIA became affiliated with the National Down Syndrome Congress and the National Down Syndrome Society and began providing community services in late 2004. The organization’s first project was to develop a comprehensive New Parent Guide for parents of children with Down syndrome and the professionals serving them. By mid-2005 the DSIA had connected with local hospitals and became the local source of information for medical professionals and parents. Within one year the DSIA distributed 150 New Parent Guides.

The DSIA formally launched operations in March 2005 with its first Celebration of Hope at the UC Davis M.I.N.D. Institute. The group now provides regular educational symposia, sponsorships to national conferences, information for parents and professionals and peer support. Future goals include hosting local conferences, presenting sibling workshops and developing social activities for adolescents and adults with Down syndrome. The DSIA continues to provide essential information and support to new parents.

yndrome Information Alliance5098 Foothills Boulevard, Suite 3, #464

Be gentle.