We’re honored to name the Down Syndrome Association of Orange County as our Rylee + Cru Foundation Grant Recipient for the month of June. Since 1978, DSAOC has provided meaningful opportunities, programs, and resources for individuals with Down syndrome and their families. We’re proud to support their impactful mission. Learn more about the difference they are making in our Q&A with Executive Director Kellie Perez-Tuchowski.
Q&A
Q. What is Down Syndrome Association Orange County’s mission and vision?
A. The Down Syndrome Association of Orange County (DSAOC), founded in 1978, serves families and the community by providing connection, information, and hope for individuals with Down syndrome. Our Mission is to promote awareness, offer meaningful programs and support, and empower individuals with Down syndrome to fulfill their potential. DSAOC aims to be a comprehensive resource for all Down syndrome-related needs and a model for community collaboration. Our inclusive approach has welcomed families with other chromosomal differences and disabilities. For more information, visit www.dsaoc.org and follow us on social media at www.facebook.com/dsaoc and www.instagram.com/dsaoc. You can also view our YouTube page: https://www.youtube.com/@DSAOC_videos/videos.
Q. What kinds of programs and support does DSAOC offer for individuals with Down syndrome and their families? And how do you collaborate with schools, healthcare providers, and other organizations to ensure comprehensive care and advocacy across all stages of life?
A. DSAOC has evolved from an organization that focused most of its support on new families and younger children with Down syndrome, to now serving from prenatal diagnosis through the entire life journey of the family member with Down syndrome.
- Our Expectant and New Parent Luncheon welcomes parents, grandparents, siblings, and other caregivers to learn about the journey ahead and connect with parent mentors and local service providers.
- Our Sibshops program supports siblings ages 7–14, led by older peers who also have a sibling with Down syndrome. They learn, share, and enjoy social and recreational activities—many form lasting friendships.
DSAOC has been collaborating with local service providers, schools, healthcare agencies and corporations for the last four decades. We collaborate to bring valuable programs to our community, create more employment opportunities and bring more awareness about the value our loved ones with Down syndrome bring to their families and community.
- We support schools by providing resources they can use in the classroom to help explain what Down syndrome is, especially during October - Down Syndrome Awareness Month.
- DSAOC has a great relationship with Orange County Regional Center so we can better help families navigate state resources.
- We utilize our relationship with Disability law groups and other attorneys who provide special needs trusts and conservatorship/guardianship services to provide free educational seminars to our families.
- Our collaborations with local colleges and universities, provide free services like hearing screenings, speech therapy, handwriting workshops, and occupational therapy.
- Local private schools provide event/activity volunteers and host dances for our community.
- Our long-standing partnership with UCI supports the Genetic Counselor program, allowing students to interact with our teens and adults for real-life perspective. UCI also conducts research on aging and Alzheimer’s in people with Down syndrome, and DSAOC played a strategic role in launching the first Adult Down Syndrome Clinic at UCI Family Health Center.
- We raised $300,000 to help create the first Pediatric Down Syndrome Clinic in Orange County at CHOC Children’s which is now self-sustained through insurance. CHOC also conducts research in early intervention, which we help distribute to families.
- Because of the connection between Down syndrome and Alzheimer’s, we collaborate with Alzheimer’s OC to provide monthly support meetings and offer families screening tools to monitor daily function and self-care.
- DSAOC is a role model for community interaction and collaboration. DSAOC's Executive Director (me :)) is the volunteer chairperson for an annual giving day through the Orange County Community Foundation that brings together several other community organizations that serve those with disabilities. DSAOC's New Parent Program Coordinator attends meetings with other Down syndrome organizations across the nation to learn and share best practices for serving expectant and new parents.
Q. What are some of the events that you host for people in greater Orange County with Down syndrome? Can you tell us about your Red Carpet Ball?
A. DSAOC has a very busy schedule filled with programs, activities, support groups, educational seminars, and events. DSAOC has nine teen/adult programs that are weekly and run year-round. Each of our programs focus on mental, physical and social wellness for individuals with Down syndrome and other disabilities. We host a bowling league for our teens/adults, Karaoke Movie & Game Nights, singles mixers, dances and an Awesome Advocates group (for individuals with disabilities age 15+) that participates in community activities as well as in-center activities. Our annual World Down Syndrome Day event brings together 400+ families and supporters in a public setting to celebrate our family members and friends with Down syndrome through unity, performances and dancing. Our largest annual teen/adult event is DSAOC's Red Carpet Ball Dinner & Dance. This event is themed with beautiful and fun decorations, photo backdrops, photo booths, dinner, dessert and dancing, with tunes spun by our long-time DJ Willpower who is an adult with Down syndrome. While this event is exciting to attend, it also gives our attendees an opportunity to feel independent and 'grown-up'. It is one of DSAOC's flagship events, attended by over 200 individuals with Down syndrome and their friends with/without Down syndrome, and almost 100 volunteers.
Q. What impact has DSAOC had in the Orange County community over the years? Can you share any success stories or testimonials from families you've supported?
A. Founded in 1978, DSAOC is the original Down syndrome organization for greater Orange County. We were the first organization to bring large dances and other social events to our community. Families would tell us that our dance was the first one that their son/daughter attended because they weren't allowed to attend their school's prom due to the school requiring support/chaperones that they didn't want to provide. We were the first to bring recreational programs to Orange County specifically for teens/adults with Down syndrome that included a book club, dance classes, martial arts, and improv/drama programs. Parents would tell us how they were told that their loved one wasn't able to join a typical dance program in their own neighborhood, or how they couldn't learn to read past a certain point so joining a book club would be a waste of time. Focusing on the social opportunities alone, due to our weekly programs and other social events, we've had parents tell us that because of the friendships made, their son/daughter now have true friends to invite to their birthday parties.
We don't like the word "can't," so we always seem to work harder when we're told someone is missing an opportunity because they can't comprehend something. Our team was strategic in working with our state’s capital, immigration services, Regional Center, and others to help modify the questionnaire and testing related to granting American citizenship to individuals with intellectual disabilities. We helped the family locate a facility to do the correct blood testing to confirm the karyotype of Down syndrome, then proceed with modified testing. We were so excited to hear and see the results in the photo below!
Check out our “Testimonial Tuesday” videos on our Facebook and Instagram pages for more examples.
DSAOC is a place of belonging for individuals with Down syndrome and now those with other disabilities. We look forward to your support so we can continue making a positive impact, changing perceptions and changing lives.
Q. How can we, as a community, best show love and support for individuals with Down syndrome and their families?
A. One of the best ways to show love and support for individuals with Down syndrome and their families is to get involved with organizations like DSAOC. There are several volunteer opportunities available, as well as ways you can support DSAOC's meaningful programs, services, activities and events. No matter how you choose to get involved, you will have the opportunity to meet families and their loved ones with Down syndrome and help spread awareness about the value they bring to our lives and communities. If you happen to see someone with Down syndrome when you are out and about, take time to smile and say hello. If you happen to have someone with Down syndrome applying for a job or other opportunity, learn about their skills and talents, and if they might be a good fit, give them a chance. Know that there are several community supports, including job coaches, that can help them become a valued member of your team.
Thank you!
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We are honored to support organizations creating meaningful change. Submit an application to recommend a 501(c)(3) non-profit making a difference in the lives of families in your community and each month we’ll select one to receive a $10,000 grant in your name. Thank you for being part of this work.
