Staff from CHOP’s Trisomy 21 Program recently attended the National Down Syndrome Society’s annual Advocacy Conference in Washington, DC. Formerly known as the “Buddy Walk on Washington,” the event has grown and evolved over the years to become the Down Syndrome Advocacy Conference (DSAC). This year’s event was held April 17-19, 2023.
More than 350 people from around the country gathered in our nation’s capital to advocate for legislative priorities that affect the Down syndrome community. With both a personal and professional connection – as well as an inherent desire to promote the acceptance, inclusion, health and well-being of all individuals with Down syndrome – I decided to attend the conference this year with my 19-year-old son, Tyler, who has Down syndrome.
Pre-conference sessions
The first day of this three-day conference included pre-conference learning sessions presented in collaboration with the National Down Syndrome Congress (NDSC) and the Global Down Syndrome Foundation. Pre-conference sessions included topics on education, employment and health and wellness.
While attending the pre-conference sessions, individuals with Down syndrome (like Tyler) participated in sessions to learn the basics of self-advocacy. These newly trained self-advocates were then introduced to the legislative priorities they would be advocating for while on Capitol Hill, as well as how to effectively share their personal stories.
Legislative training
Day two was a full day of legislative training for both self-advocates and parents/supporters in preparation for the following day: our advocacy work on Capitol Hill. Self-advocates (age 16 and older) were encouraged to attend the legislative training day while younger youth (age 6-15) attended a youth advocacy track.
All attendees heard from guest speakers from the National Down Syndrome Society (NDSS) and from nationally recognized self-advocates as they learned more about the legislative priorities that were identified for this year’s conference.
Legislative priorities for the 2023 conference included:
- Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 2706)
- Transformation to Competitive Integrated Employment Act (S. 533/H.R. 1263)
- Inclusion of the Down Syndrome Community in Alzheimer's Initiatives
- Increased membership on the Congressional Task Force on Down Syndrome
- Increased funding for the INCLUDE project at the National Institutes of Health (NIH)
Advocacy work
Our final day of the conference culminated with a day spent advocating on Capitol Hill. Throughout the day, Down syndrome advocates had scheduled meetings with their designated representatives in Congress.
Wandering the halls of the Capitol buildings – and seeing so many individuals with Down syndrome and their families advocating for themselves and their loved ones – was inspiring. While some attendees met with legislative assistants, chiefs of staff or interns, others were able to meet directly with their senators or U.S. representatives.
As constituents, Tyler and I were determined to educate our members of Congress about the important issues impacting the Down syndrome community. To effectively do that we planned to present each legislative priority to our representatives along with a personal story or connection to the issue. With a bit of nerves and tons of enthusiasm, we did just that!
Attending the DSAC was a first for us, but I’m certain it won’t be the last. In addition to the opportunity to educate members of Congress – to show them the real people impacted by their decisions – this conference was also an opportunity for us to connect with other individuals with Down syndrome and their families, and to form new friendships.
I am grateful to have shared this experience with my son and to have connected with so many other advocates from across the country.
Tricia D. Wilson, RN, is a nurse coordinator with the Trisomy 21 Program and a triage nurse and clinic coordinator with the Division of Developmental and Behavioral Pediatrics at Children’s Hospital of Philadelphia.
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Staff from CHOP’s Trisomy 21 Program recently attended the National Down Syndrome Society’s annual Advocacy Conference in Washington, DC. Formerly known as the “Buddy Walk on Washington,” the event has grown and evolved over the years to become the Down Syndrome Advocacy Conference (DSAC). This year’s event was held April 17-19, 2023.
More than 350 people from around the country gathered in our nation’s capital to advocate for legislative priorities that affect the Down syndrome community. With both a personal and professional connection – as well as an inherent desire to promote the acceptance, inclusion, health and well-being of all individuals with Down syndrome – I decided to attend the conference this year with my 19-year-old son, Tyler, who has Down syndrome.
Pre-conference sessions
The first day of this three-day conference included pre-conference learning sessions presented in collaboration with the National Down Syndrome Congress (NDSC) and the Global Down Syndrome Foundation. Pre-conference sessions included topics on education, employment and health and wellness.
While attending the pre-conference sessions, individuals with Down syndrome (like Tyler) participated in sessions to learn the basics of self-advocacy. These newly trained self-advocates were then introduced to the legislative priorities they would be advocating for while on Capitol Hill, as well as how to effectively share their personal stories.
Legislative training
Day two was a full day of legislative training for both self-advocates and parents/supporters in preparation for the following day: our advocacy work on Capitol Hill. Self-advocates (age 16 and older) were encouraged to attend the legislative training day while younger youth (age 6-15) attended a youth advocacy track.
All attendees heard from guest speakers from the National Down Syndrome Society (NDSS) and from nationally recognized self-advocates as they learned more about the legislative priorities that were identified for this year’s conference.
Legislative priorities for the 2023 conference included:
- Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 2706)
- Transformation to Competitive Integrated Employment Act (S. 533/H.R. 1263)
- Inclusion of the Down Syndrome Community in Alzheimer's Initiatives
- Increased membership on the Congressional Task Force on Down Syndrome
- Increased funding for the INCLUDE project at the National Institutes of Health (NIH)
Advocacy work
Our final day of the conference culminated with a day spent advocating on Capitol Hill. Throughout the day, Down syndrome advocates had scheduled meetings with their designated representatives in Congress.
Wandering the halls of the Capitol buildings – and seeing so many individuals with Down syndrome and their families advocating for themselves and their loved ones – was inspiring. While some attendees met with legislative assistants, chiefs of staff or interns, others were able to meet directly with their senators or U.S. representatives.
As constituents, Tyler and I were determined to educate our members of Congress about the important issues impacting the Down syndrome community. To effectively do that we planned to present each legislative priority to our representatives along with a personal story or connection to the issue. With a bit of nerves and tons of enthusiasm, we did just that!
Attending the DSAC was a first for us, but I’m certain it won’t be the last. In addition to the opportunity to educate members of Congress – to show them the real people impacted by their decisions – this conference was also an opportunity for us to connect with other individuals with Down syndrome and their families, and to form new friendships.
I am grateful to have shared this experience with my son and to have connected with so many other advocates from across the country.
Tricia D. Wilson, RN, is a nurse coordinator with the Trisomy 21 Program and a triage nurse and clinic coordinator with the Division of Developmental and Behavioral Pediatrics at Children’s Hospital of Philadelphia.
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