October is Down Syndrome Awareness Month, and we’re taking the opportunity to highlight a fantastic organization in the Nebraska disability community. We recently sat down with Jodi White, Program Director of the Down Syndrome Association for Families of Nebraska (DSAF), to learn more about the organization’s accomplishments and goals.
What is DSAF’s mission?
“The Down Syndrome Association for Families of Nebraska (DSAF) recognizes that every person with Down syndrome is an individual who has a unique purpose and set of abilities. It is our mission to provide support for individuals with Down syndrome, their families, friends, educators, and professionals who share in their lives. DSAF provides networking and a positive vision for the future.”
What are some examples of the ways your organization supports the disability community?
“Since the start of the organization in 1995, every dollar raised has gone to foster family networking, new parent support, and community engagement. DSAF's Parents First Call program offers a helping hand to new parents upon receiving their diagnosis. Thanks to the Medical Outreach team, local doctors, nurses and teachers are provided with accurate and positive information and literature regarding Down syndrome. Members also have opportunities to participate in fun, age-appropriate activities with their families through the Stars groups.
In addition, we host the 'Step Up Walk' - DSAF's biggest awareness event, which provides a heartwarming, firsthand experience of what we we're all about The Capital City Step Up for Down Syndrome Walk is held annually on the first Saturday in October. Mark your calendars and make plans to join us on October 5, 2019 - it will be our 18th!”
What is the most rewarding part of your job?
“I joined the organization more than three and a half years ago with much trepidation. As a mother of four typical children, I had concerns regarding how, or if, I would be accepted into this very intimate group. In fact, I still catch myself nervously admitting, ‘I'm not a parent.’ I realize I need to clarify and awkwardly blurt, ‘I do not have a child with Down syndrome,’--not false, but not entirely representative of my life either.
Sure, there are naysayers, but time and again I am greeted with open arms and pure gratitude. Most of our members genuinely appreciate what DSAF offers them, their children and entire family, and the greater Down syndrome community. When I meet a new parent in-person for the first time and he/she attaches a face to the name...the realization hits and their eyes well-up...they look directly and deeply into mine and say ‘Thank you for answering (the phone) that day. Your voice was just what I needed and I knew then, everything was going to be okay.’ It's good feeling--knowing you're making a difference and a positive impact.”
Any uplifting stories you’d like to share about helping members of the Down syndrome community?
“DSAF is particularly proud of the efforts made by its Medical Outreach team. In addition to its work with the medical community, the Medical Outreach team offers Parents First Call - a group of fellow parents, who share in the experience of an unexpected diagnosis and are trained to provide accurate information, support and, perhaps most useful, personal insight. Whether parents are celebrating the birth or anticipating the arrival of their baby, DSAF's Medical Outreach is there to help get started on a rewarding journey of having a child with Down syndrome.
The team put together an intimate compilation of personal stories from family members and friends with loved ones who happen to have Down syndrome and offer it in welcome baskets given to new parents. A Book of Stories is a wonderful example of the good things coming from DSAF's Medical Outreach.”
How can others get involved in your initiatives?
“Please visit dsafnebraska.org and feel free to review our 2017 Annual Report, where you will find a detailed account of what DSAF is doing to fulfill its mission to provide support and hope to individuals with Down syndrome and those who share in their lives throughout Lincoln and statewide.
Join as a member (see, What does membership mean for you?), donate, volunteer at an event, become a corporate sponsor, ask your employer about matching gifts - there are so many ways to get involved! Contact us at firstname.lastname@example.org or call 402-421-1338 to learn more.
DSAF is more than just an association. It is a place of belonging and hope. It is a positive vision for the future. And it is filled with smiles.”