Research Voices connects the Down syndrome community to accurate, timely, and useful information about research opportunities and supports individuals and families who choose to participate in medical research and clinical trials.
People with Down syndrome have historically been underrepresented in research, but your trusted voice in research can help change that!
Research Voices Volunteers will:
- Serve as trusted, relatable messengers to their peers.
- Attend local conferences and events, share NDSS resources, and tell your own stories of participating in research.
- Engage with families and encourage them to consider participating in research.
Levels of Support:
Through three levels of peer support, you can decide how you want to be involved. By sharing common experiences of research participation and providing encouragement in the decision-making and participation processes, you can help individuals and families gain more confidence in participating in research.
Types of Research Voice Volunteers:
1. Promoters
Promoters are anyone who will:
- Share information and resources through social media and other personal networks. Examples include: Research studies interest form, announcement of open studies, and NDSS videos and materials.
- Host Resource tables at local and regional events.
2. Champions
Champions are family members and decision makers who participate in the Promoter activities listed above, and will also:
- Provide informal, experience-based support to families considering clinical trial participation and/ or share your story at state or regional conferences and NDSS-sponsored events and webinars.
3. Heroes
Heros are self-advocates who participate in the Promoter activities listed above, and will also:
- Share stories of research participation through NDSS social media and newsletters and participate as panelists in NDSS-sponsored events and webinars.
Sign Up to Volunteer
Free training is provided to all volunteers. Trainings are offered once per quarter. Complete the volunteer interest form to receive more information about Research Voices.
Bring Research Voices to Your Event
Are you interested in having a Research Voices volunteer share their experience with research at an event? Email Amy Shapley-Farrell, NDSS Senior Manager of Community Resources, at AShapley-Farrell@ndss.org.