Honoring the Heart of Every Family: National Family Caregivers Month
Every November, we take time to recognize the incredible people who provide daily care, love, and stability to those living with complex medical needs. National Family Caregivers Month is a moment to pause and acknowledge the tireless efforts of caregivers—parents, grandparents, siblings, and friends—who devote themselves to improving the quality of life for someone they love.
For families affected by Dopamine Transporter Deficiency Syndrome (DTDS), caregiving is both a full-time role and a lifelong journey. From managing feeding tubes and medications to coordinating therapies and advocating for access to care, DTDS caregivers carry responsibilities that often go unseen. Their dedication sustains not only their children’s well-being but also the entire community of rare disease families who draw strength from one another.
While caregiving can be rewarding, it also comes with emotional, physical, and financial challenges. Burnout, isolation, and exhaustion are common experiences, especially in the world of rare disease where medical understanding and support can feel limited. Recognizing these realities helps us create more compassionate systems of care and community support.
As we reflect this month, we invite everyone to take a moment to show appreciation for caregivers in their lives. Sometimes a simple message, a few hours of respite, or listening without judgment can make a meaningful difference.
If you are a caregiver yourself, please know that you are not alone.
Here are a couple helpful resources to explore:
Family Caregiver Alliance — Practical tips, emotional support, and advocacy for family caregivers.
Global Genes: Caregiver Resources — Free toolkits and community connections for rare disease families.
At the DTDS Foundation, we see and appreciate every caregiver in our community. Your strength and persistence are what keep hope alive for better treatments and a brighter future. This month—and every month—we honor you.