How to Get Involved with the DTDS Foundation
At the DTDS Foundation, our mission is simple yet powerful: to bring hope, support, and progress to families affected by Dopamine Transporter Deficiency Syndrome (DTDS). Because DTDS is so rare, every voice, every volunteer, and every donation has an outsized impact.
By getting involved, you help accelerate research, raise awareness, and provide essential resources to families across the globe. Here are meaningful ways you can join our mission:
1. Share Our Story
Awareness is the first step toward change. Because DTDS is little known—even within the medical community—every share helps us reach the people who need it most.
Share our posts with your friends, family, schools, and workplaces.
Tell others about DTDS and the importance of rare disease research.
👉 When you share, you help families find answers sooner and connect them to a supportive community.
2. Volunteer Your Skills
The DTDS Foundation is powered by a passionate and talented community. Whether you have an hour a week or a few hours a month, your skills can make a real difference.
Creative support: graphic design, social media, or writing.
Events & fundraising: planning, outreach, and promotion.
Community outreach: connecting with families, schools, and clinics.
📧 Interested in volunteering? Reach out at kelly@dtdsfoundation.org.
3. Apply to Join Our Board of Directors
Our volunteer Board of Directors provides vision, strategy, and leadership for the Foundation. Serving as a board member is a meaningful way to shape the future of DTDS research and family support.
We welcome all applicants, but especially those with backgrounds in:
Nonprofit leadership
Finance or fundraising
Medical research or clinical care
Communications or advocacy
📌 To learn more about board opportunities, email kelly@dtdsfoundation.org.
4. Donate to Support Research and Families
Every dollar brings us closer to treatments and improved care. Donations help fund:
Patient and family support resources.
Research initiatives like registries and natural history studies.
Advocacy and awareness campaigns.
Whether you give once or set up a monthly contribution, your generosity fuels progress.
👉 Donate today to make a lasting impact.
5. Fundraise in Your Community
Want to multiply your impact? Hosting a fundraiser is a powerful way to bring your community into the mission.
Organize a bake sale or yard sale.
Celebrate your birthday or special occasion with donations instead of gifts.
Plan a walk, run, or awareness event.
We’ll provide tips and resources to help make your fundraiser a success.
6. Advocate for Rare Disease Awareness
Your story is powerful. When families share their experiences with DTDS, it inspires change at every level—from local communities to global research networks.
Share your journey with DTDS.
Participate in Rare Disease Day or other awareness events.
Partner with rare disease organizations in your country to amplify your voice.
7. Participate in Research
Families are at the heart of scientific progress. By contributing data and participating in studies, you help researchers understand DTDS more fully and move closer to therapies.
📌 Learn more about joining the RARE-X Data Collection Program and other opportunities on our Support page.
8. Stay Connected
Don’t miss updates on research, family stories, and opportunities to get involved. Sign up for our newsletter today.
Together, We’re Stronger
Whether you’re a parent, friend, researcher, or supporter, there’s a place for you in the DTDS Foundation community. Every action—big or small—brings us closer to a world where children with DTDS can live longer, healthier, and fuller lives.
💙 Thank you for being part of this journey.