The Down Syndrome Family Support and Advocacy Group (DSFSAG), also referred to as Michiana Down Syndrome, was formed by parents in the 1980s. We are a 100% volunteer, not-for-profit 501c3 organization. We proudly serve St. Joseph, Marshall, LaPorte, Starke and Elkhart counties in Indiana and Cass, St. Joseph and Berrien counties in Michigan.
The mission of Michiana Down Syndrome is to help improve the lives of individuals with Down syndrome and their families through advocacy, education, research, and fellowship.
The vision of Michiana Down Syndrome is to help foster a community of acceptance which promotes the best opportunities for individuals with Down syndrome in helping them to achieve their greatest potential and realize their dreams.
We are primarily funded by our annual Michiana Down Syndrome Walk. Other sources of funding are special events and donations. The organization is 100% volunteer, which means that all funds go to our services and programs. The funds we raise remain in our local community.
funding we implement our Mission and Vision through:
1. Medical and Developmental Grants: $250 grants are offered annually to families to help with developmental and medical costs for the member with Down syndrome. Families are required to download a form from our website and submit it along with their receipts for reimbursement.
2. Recreational Grants: Members with Ds who participate in local organized recreational programs (such as Reins of Life and Buddy Up Tennis) can apply for a recreational grant to help pay a portion of the fees.
3. Library: We have an extensive library of books, DVDs, and educational support materials related to Down syndrome that families can check out free of charge.
4. Welcome Bags: These are available to all new babies’ families. The bag contains a few books about Down syndrome, gifts for the baby and parents, and a file folder with inspirational stories, facts about Ds, and information about the Medicaid Waivers and Children’s Special Health Care Services programs.
5. Family Support Group Meetings: The meetings include guest speakers on a variety of topics including special needs trusts, health and safety issues, Medicaid waivers, etc. Our annual talent show is a favorite among our members. We also offer monthly meetings for age-specific groups: birth to 3, 4 to 7, 8 to 12, and teen to adult. Some of the meetings are held at the Down Syndrome Resource Center, others are out in the community.
6. Educational Scholarship: $1000 scholarship available for any individual with Ds who attends a secondary education program.
7. Research: We donate to Down syndrome cognition research annually. See our research page for details.
8. Annual Calendar: Our policy is to use at least one photo of each individual with Down syndrome whose photo is submitted. We sell them at a low cost ($5) to make it an affordable awareness tool for families to use. The calendars are also used as thank-you gifts to Michiana Down Syndrome Awareness Walk sponsors and are given to medical professionals with the intention of spreading positive awareness about Down syndrome.
9. Parties: We host three or four family parties each year.
10. Educational Conferences: We try to sponsor an annual conference in our area to help promote education, awareness, and support for our families and professionals. We keep the fees low ($20- $35 for an all-day event, including lunch) in order to make the conferences affordable for parents and professionals. Some past presenters were Susan Peoples and Nancy Kaufman.
11. Hospital Bags: A small gift bag to lift your spirits which can be delivered to any member with Ds who has to have a hospital stay. If your child is scheduled for a hospital stay, please contact us so that we can get a bag to you.
12. Birthday cards: Sent to each member with Ds along with a $5 gift card. Please let us know if you want your family member included.
13. Transition bags: Available to families whose child is transitioning out of First Steps into preschool or entering high school. These bags contain books and other resources to help families make a well-informed transition.
14. Moms’ Night Out: Moms/Grandmothers meet monthly at local restaurants in the Michiana and St. Joseph-Benton Harbor area for dinner. We give each one who comes $5 towards the cost of her meal.
15. Prenatal Education: We are partnering with some members of our community to provide prenatal information about Down syndrome that is accurate and positive. As funds permit, we hope to start a local Down syndrome awareness campaign.
16. Legislative efforts/National issues: We believe that in order to best serve our members, we need to keep abreast of current research, best practice methods for education, prenatal awareness, adult issues, fundraising methods, etc.
17. Resource Center: The Michiana Down Syndrome Resource Center is located at 2448 Miracle Lane in the Town and Country Shopping Centre in Mishawaka. The Center serves as our business office, a meeting place for our parent groups and small events and also houses our library. Since the group is run by volunteers, the Center is only open when we are working in the office. during events, or by appointment. Please call us at 574-334-7734 for information and hours.
18. Hispanic Outreach: We currently have printed materials in Spanish, and would like to start parent meetings for Spanish-speaking families.
19. Special Needs and Transition Fair: We partner with community disability groups to co-host this fair. There are over 60 agencies participate and offer information and resources for individuals with a variety of special needs. It is free and open to everyone in the Michiana community.
20. Down Syndrome Ambassador’s Group: This program provides Teen and Adults with DS an opportunity to get involved in raising awareness for Down syndrome in our community. Ambassadors work on their speaking skills and get involved with volunteering.
We are an affiliate of the national Down syndrome organizations whose logos are displayed below.