What a week it has been!
Factor-H is again recognized for its public service to underserved Latin American HD families at the International Congress of the Movement Disorder Society (MDS), the largest international clinical organization dedicated to clinical practice for movement disorders.
More than 4500 people from 100 countries are attending the conference. We are humbled that our President, Ignacio Muñoz-Sanjuán, was recognized with the Public Service Award of the year for Factor-H work. Below you can see the recording of the award ceremony and Ignacio’s brief acceptance speech after the kind introduction from MDS President, Victor Fung. It was a great honor to receive this award in front of all these movement disorders specialists, including many friends and leading Latin American HD clinicians.
Marina González de Kauffman from Venezuela was present during the ceremony, which took place in Philadelphia on September 27, 2024. This award is dedicated to all the families we serve, and is a testament to the hard and persistent work of the entire Factor-H team, collaborators, volunteers, and the family members who work side-by-side to improve the quality of life of affected families.
Read my acceptance speech …
“It is a great honor to receive the Public Service Award from the International Movement Disorder Society, on behalf of the Factor-H team and the Latin American Huntington’s Disease (HD) families we serve. I am humbled to be of service to those families living with the burden of HD and in conditions of extreme vulnerability”.
In 2012, a Brazilian man suffering from HD held my hand after a seminar to a lay audience and told me: “I know it’s too late for me, but please, please help my daughter”.
At that moment my life took a different turn – I understood that my work as a neuroscientist working to find HD treatments was transgenerational and that to manage this disease, we must consider the human toll it takes across generations.
I came to the United States from Spain to become a molecular biologist. I had the fortune of training at The Johns Hopkins Medical School and at The Rockefeller University, with individuals who instilled in me the importance of focusing on significant problems. I have worked in the field of Huntington’s Disease since 2007. At CHDI Foundation, I led multiple programs currently in clinical development and helped develop biomarkers to support disease modifying therapies. Yet I lacked a true understanding of the human dimension of this disease.
In 2012-2013 I visited several HD communities in Brazil, Colombia, Peru and Venezuela. Through these trips, I was able to understand the immense effects that this disease imparts on individuals, their families, and their communities. The burden of living with HD varies greatly in distinct geographic and socioeconomic conditions. I was able to witness how unequal access to healthcare and institutional support impacts every aspect of these families’ lives.
Factor-H (for Hope, Huntington’s, Humanity) was started in 2012, and became a registered nonprofit foundation in the USA in 2018. Fortunately, through an extremely committed network of collaborators on-site, we together have conducted a wide range of projects aligned with our four core pillars: Health, Youth, Community Development, and Advocacy.
Factor-H works to support more than 700 families in Venezuela, Colombia and Peru. Regions in those countries host the largest known communities of HD affected individuals in the world and have been the subject of numerous research studies. In particular, the communities in Venezuela flanking the shore of Lake Maracaibo in Zulia State, played a fundamental role in identifying the causative mutation for HD. Everything the HD research community does today stems from that important discovery; yet the descendants of those families live in conditions of extreme neglect.
Factor-H provides neurological and psychological care for patients and their families; we have implemented a caregivers’ program, and we have taken an active role in education and support for at-risk children.
Through our advocacy strategy, we ensure that people and institutions know about the disease and the impact it has in those families. We organized an audience with Pope Francis in 2017, and international conferences in Colombia, where we unite clinicians, scientists, social workers, patient associations, artists and families.
I’d like to share a quote from Pope Francis’ speech at the Vatican City, where hundreds of patients from 26 countries congregated.
“For far too long, the fears and difficulties that characterize the life of people affected by
Huntington’s Disease have surrounded them with misunderstandings and barriers, veritably excluding them… I speak to you, physicians, health care workers … it is surely your dedication that give tangible shape to the hope and motivation of the families who trust in you.”
The work we do at Factor-H has had a transformative impact on my life, for our collaborators and for countless families afflicted by HD. It has transformed the way I direct my professional life. I would request that the MDS work towards erasing disparities in health access, particularly for those living in conditions of economic and social disadvantage. There is much we can do together!
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