A huge congratulations to Alex Fisher who secured the Amgen Prize to support Venezuelan communities living with Huntington’s disease.

Alex Fisher has dedicated 15 years of her life to supporting those affected by Huntington’s disease. A Senior Occupational Therapist in Neuropsychiatry at BSMHFT, she has also worked with Factor H for the past two years, a non-governmental organisation (NGO) for people with Huntington’s disease (HD) in Latin America.

Every year the Concordia Summit in New York brings together and celebrates the work of humanitarian NGOs. A total of 90 applications from around the world were submitted to secure the prestigious Amgen Prize, where winners receive $150,000, funded by MIT and Amgen, to improve the journey for patients with rare diseases.

After careful deliberation, Factor H was awarded the prize fund thanks to Alex’s solution for a caregiver’s programme for people with Huntington’s disease in Venezuela. 

The project will deliver education to caregivers, psychological support, provision of equipment, paid care, occupational opportunities and a safe space for showers and meals for people with HD who are homeless.

Alex said:

It was a real pinch me moment when I heard the news that we’d won. I’m so proud that the ethos of the project was recognised by the panel. People with organic brain diseases should never be overlooked, and whilst there is still so much more work to be done globally, this project has helped to shine a spotlight on Huntington’s disease.

Venezuela has the biggest population of people with Huntington’s disease in the world. Around one in eight people are living with the disease in a town called, Barranquitas, one of the most deprived areas of Venezuela, which is where the project is set to be based.

When asked what she was most hopeful for with this project, Alex continued:

“I am hopeful that this project will be able to give residents a better future by improving their health, social and mental health care needs. HD is a global issue, the more we talk about it, the more prepared we can be.”

Part of the project is also a documentary called La Luz or ‘The Light’ which Alex Fisher and Gindel Delgado premiered at the recent European HD Network in Strasbourg.

More information on Factor H’s caregivers programme can be found on their YouTube channel.