Family and Community Support & Involvement

The diagnosis of a genetic condition is a life-altering event for individuals and families. All at once, there can be a lot of information to absorb, as well as many issues to consider. Those living with the reality of a genetic condition often need a little extra support and guidance. Some view a new diagnosis as an opportunity -- a chance to get involved and use their own experiences to help others.

Support Resources

The organizations listed below work to fill the needs of families and communities in Wisconsin by offering many services and opportunities, or quite simply an ear to listen and a shoulder to lean upon.

Birth-to-3 - Wisconsin 's early intervention program, designed to aid infants and toddlers with developmental delays and disabilities and their families. The program coordinates developmental, health, and social services in order to help children increase their skills and abilities and participate in their communities.

Wisconsin First Step - Information and referral hotline for children ages birth to 21 with special needs. Families and professionals can call to discover available services and have questions answered.

Wisconsin Statewide Transition Initiative - Offers a comprehensive approach for children with special needs transitioning into adolescence and adulthood.

Children and Youth with Special Health Care Needs - This state program works to support children and youth with special health care needs and their families. Five regional centers are located across the state in Madison , Milwaukee, Green Bay, Chippewa Falls, and Wausau. These centers provide free and confidential assistance to families and providers in the community. Staff members are available to provide information on referrals, follow-up services, and family support.

Parent-to-Parent of Wisconsin - Provides parent matching, a program to make one-to-one connections between parents who have had similar experiences raising children with special needs. Also provides training for parents who feel ready to become Support Parents themselves.

Family Village - An Internet-based organization developed at the Waisman Center in Madison , Wisconsin . Family Village is a “global community that integrates information, resources, and communication opportunities . . . for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.�

March of Dimes, Wisconsin Chapter - The March of Dimes is a world-renowned national organization dedicated to saving babies from premature birth, and to improving the health of babies and children in general. The Wisconsin Chapter has information regarding resources and events of interest in the state.

How to Get Involved

There are many opportunities to get involved in the genetics community of Wisconsin for those who are interested. Patients, families, and friends can join committees, contribute to support groups, and become group advocates. These individuals have power to their voices, and are uniquely qualified to offer a needed perspective in the process of improving genetic services in Wisconsin. Family and community input allows for better planning, strong parent-provider partnerships, and enriching, creative solutions for a variety of issues.

• Join a Council, Board, Committee, or Organization
  Many state and local groups are constantly looking for parent and community representatives to sit on their boards and act as full members. These representatives often have the opportunity to guide policy, make recommendations, and advise other members in how the system may be improved. Click here for a list of Parent Boards (PDF)

• Become a Support Parent
• Parent-to-Parent of Wisconsin offers “one-to-one connections for parents new to having a child with special needs, experiencing a time of stress or simply seeking support from another parent who has been there.â€� If you are a parent who has “been thereâ€� and would like to help others, contact Parent-to-Parent by calling 1-888-266-0028 or visit their Web site at www.familyresourceconnection.org/ptpow.htm