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Connecting families to research, resources and support.

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DTDS Foundation exists to help advance research for dopamine transporter deficiency syndrome (also known as infantile parkinsonism-dystonia) while sharing information about the disease and supporting patients and their families.

Dopamine transporter deficiency syndrome (DTDS), also known as infantile parkinsonism-dystonia, is a rare, inherited movement disorder caused by mutations in the SLC6A3 gene, leading to a deficiency in the dopamine transporter (DAT).

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DTDS is a movement disorder characterized by dystonia (involuntary muscle contractions) and parkinsonism (tremors, slow movement, rigidity) that typically starts in infancy or early childhood and worsens over time. 

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The condition is caused by mutations in the SLC6A3 gene, which provides instructions for making the dopamine transporter protein (DAT), responsible for recycling dopamine in the brain. 

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Classic DTDS: Usually begins in early infancy with nonspecific symptoms and progresses to severe dystonia-parkinsonism. 

Atypical DTDS: May have a later onset in childhood, adolescence, or adulthood, with a milder or different presentation. 

How we help

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Information

Knowledge is empowering — especially for families facing the challenges of DTDS. We’re here to help by offering clear, up-to-date information about the condition, what to expect, and where to find support. From educational resources to updates on the latest research and treatment options, we make sure families and donors have the tools they need to stay informed and involved. Whether you’re newly diagnosed or looking to support a loved one, we’re here every step of the way.

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Research

At the DTDS Foundation, we believe that research is the key to unlocking answers and finding hope for those living with DTDS . That’s why we work closely with scientists and medical experts to support studies that explore what causes this condition and how it can be treated. Every donation helps fund groundbreaking research with the potential to improve lives and bring us closer to a cure. Together, we’re not just supporting science — we’re building a future filled with hope for our loved ones.

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Support

At the DTDS Foundation, supporting families is at the heart of everything we do. We offer guidance, community connections, and emotional support to help navigate the challenges of this rare condition. For donors, we provide transparency, regular updates, and meaningful ways to see the impact of their generosity. Whether through personal outreach, educational events, or access to expert resources, we’re committed to walking alongside every family and supporter with compassion and purpose.

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