Dear DSA Friend,
I know there are many, many worthy organizations that deserve your support. The fact that you are considering supporting one of “my” children means the world to me. I’d like to tell you a little bit more about DSA and let you know exactly what your dollars can do in our community.
The Down Syndrome Alliance of the Midlands (DSA) is committed to connecting those touched by Down syndrome through education, advocacy and support. We serve over 400 families, plus their educators and health care providers, across Eastern Nebraska and Western Iowa.
DSA was founded in 1999 by a handful of parents who felt the need to associate with other families of children with Down syndrome. For ten years it functioned as an all-volunteer organization. The first employee was hired in 2009. The second and third were added in 2014 and 2015, bringing total staff hours to 65 per week.
In 2012 DSA leaders made a concerted effort to become very active in the national Down syndrome community. DSA is an affiliate of the National Down Syndrome Society (NDSS), the National Down Syndrome Congress (NDSC), and the Global Down Syndrome Foundation. DSA is also a member of the Down Syndrome Affiliates in Action (DSAIA) and the Heartland Genetics Services Collaborative. DSA’s Executive Director is the President-Elect of the DSAIA Board of Directors and DSA’s Board President is a co-winner of the 2015 NDDS Ambassador of the Year Award. These commitments have enabled us to bring professionally-developed programs and resources to our local community.
To help children, we support the whole family.
Parents are supported as soon as they reach out to us, which is often early in a pregnancy with a prenatal diagnosis of Down syndrome. Peer support is crucial as some of our newborns face medical issues that result in NICU stays or even heart or abdominal surgeries.
Our flagship program is the Down Syndrome Education Series (DSES). Each month, a speaker in the field of Down syndrome education, health care, or research is brought to Omaha to present information to DSA members that will positively impact the well-being of their children. Separate sessions are offered for professionals, usually educators who will take information to disseminate to schools in 20 districts. DSA created this program in 2014 and received a start-up grant from the Global Down Syndrome Foundation. No other Down syndrome organization has a program of this caliber and format that is free for parents and professionals to attend.
In the fall of 2016, DSA launched a tutoring program for preschoolers and school-age children. Parents will be instructed on how to support each lesson at home in between sessions.
Individuals with Down syndrome and their families are eligible for scholarships and stipends to attend NDSS and NDSC annual conferences. Both offer self-advocate trainings and breakout sessions. DSA offers $500 scholarships to teens and adults with Down syndrome to support their efforts to grow in independence and self-expression.
DSA hosts social events and roundtables throughout the year to foster relationships among our members. Many of these opportunities include activities that might be out of reach for families struggling to manage the financial burden of caring for a child with special needs. We offer respite for parents and siblings, as well.
DSA is also one of 16 organizations in an 8-state region with facilitators to train parents in creating a medical home for children with genetic disorders. A second grant from the Global Down Syndrome Foundation allows us to include a generous childcare stipend for parents attending the all-day training.
What will your dollars do?
Welcome 15-25 babies to the Omaha Metro each year
Your dollars will support presentations to OBs, Geneticists and Genetic Counselors, Maternal-Fetal Specialists, Labor and Delivery Staff, NICUs, and Pediatricians to ensure that current, relevant, and accurate information about Down syndrome is available to all patients who receive a prenatal or postnatal diagnosis of Down syndrome. You will encourage the use of neutral language (“I have the result of your test” rather than “I have bad news”) and emphasize the importance of local support. Your dollars also purchase nationally printed and medically reviewed materials for physicians and patients, DSA’s own Guide for New Parents, and beautiful board books for the little ones.
Support education advocacy
Sustain DSA’s flagship program and help implement the new tutoring program for school children. Your dollars will also grow the tutoring program by adding a second level in our 2017 / 2018 school year.
Increase organization capacity
Increase total staff hours, allowing DSA to develop and deliver more programming while transitioning the board of directors from a working to a governing board. Invest in the professional development of staff members to strengthen the service they provide to members.
Increase stipends and scholarships
Currently the stipends to attend the National Down Syndrome Buddy Walk on Washington and the National Down Syndrome Congress Annual Conference are $250 and the self-advocate scholarships are $500. Increasing the stipends and scholarship budget will allow for either greater payouts or a concerted effort to encourage more applicants because more funds will be there to award.
Send families on fun excursions
You can imagine that a family whose budget must consider multiple therapies and adaptive devices that aren’t necessarily covered by insurance might have to pass on buying tickets for a trip to the world’s best zoo. Your dollars can increase the special events budget to include a day at the Henry Doorly Zoo, as well as other events and attractions in Omaha.
Your dollars will connect our parents and children to education, to advocacy efforts, and to each other. Your dollars, donated to one team, will impact hundreds of families.
Thank you for your generosity.
Anne Mancini, Executive Director