Helping HD families in need following the Venezuela earthquakes
Rare disease families are often among the most vulnerable during emergencies
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When I first heard about the devastating earthquakes that happened in Venezuela on June 24, my heart immediately went out to the families trying to survive the aftermath. I thought about the fear, the confusion, the loss, and the uncertainty that come after such an unimaginable disaster. I also thought about the families living with Huntington’s disease (HD) who may now be facing additional challenges.
As someone living with HD, I know how hard daily life can be even when everything is going according to plan. HD requires so much support, patience, advocacy, and preparation. Now imagine trying to manage HD symptoms after an earthquake. Imagine being displaced from your home, losing access to medications, not knowing where your next meal will come from, or trying to care for a loved one with HD while searching for safety.
That is the reality many families may be facing right now.
Venezuela has a powerful and painful connection to HD. The Lake Maracaibo region in Zulia state has the largest known cluster of HD in the world. Families in this region have lived with HD for generations. Their lives, histories, and participation in research helped scientists better understand HD and contributed to the discovery of the HD gene on chromosome 4 in 1993. That means the global HD community owes a deep debt of gratitude to Venezuelan families.
So many of the advances we benefit from today were made possible because families in Venezuela allowed researchers into their communities, shared their stories, and helped the world understand this disease. We cannot honor the science that came from Venezuela and then forget the people when they are in crisis.
This is personal for me because I know what it feels like to live with a disease that is already misunderstood. I know what it means to need medication, medical care, family support, and a safe environment to function. I know how quickly stress can make symptoms worse. I know how frightening it can feel when your body and mind are already fighting hard, and then life adds another layer of hardship.
For families affected by HD, an earthquake can interrupt care. It can separate families. It can make it harder to get medication, food, shelter, transportation, and medical attention. It can place even more strain on caregivers who are already carrying so much.
I also want to be careful with the facts. According to information shared by Factor-H colleagues, the HD communities in Maracaibo were not affected by the earthquakes. However, the group is reaching out to families in Caracas and La Guaira to better understand their needs. That matters, because we don’t want to spread fear or misinformation. We want to respond with compassion, accuracy, and responsibility.
Factor-H has created an earthquake relief fund to help HD families who are affected. Factor-H is an organization that works directly with HD families in Latin America, including communities in Venezuela. Donations through their earthquake fund are intended to support affected families and help address urgent needs.
Where to donate: Factor-H Earthquake Relief Fund
This is a moment for the HD community to show up. We can donate. We can share verified links. We can raise awareness. We can support organizations already connected to families on the ground. We can remind people that rare disease families are often among the most vulnerable during emergencies.
Not everyone can give a large amount, and that is OK. Do what you can. Share information. Talk about why Venezuela matters to the HD community. Help others understand that this is not just a disaster happening far away. This is connected to our history, our research, our community, and our shared humanity.
The people of Venezuela have given so much to the HD world. Their stories helped shape what we know. Their families helped move science forward. Their courage has touched generations of HD families across the world. Now they need us.
When one part of the HD community is hurting, the rest of us should not look away. We should lean in. We should respond. We should remember that compassion isn’t just something we talk about. It is something we practice.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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