Learn about the project team members and contributors.
The Huntington Academy is the result of a multidisciplinary teamwork involving the European Huntington Association, the Asociación Española Corea de Huntington, the Ligue Huntington Francophone Belge, and the Bulgarian Huntington Association.
A group composed by family members and professionals from Norway, Portugal, Spain, Belgium and Bulgaria has devised the Huntington Academy as a tool to answer to the many gaps identified in HD care.
The Huntington Academy contents are jointly created by distinct HD organizations and reflect the real-life experiences of a heterogeneous group which represents diverse HD realities.
The Huntington Academy team hopes that this accessible and easy to use digital platform can build up the capacity of formal and informal caregivers to adequately answer to the specific needs of people impacted by HD, especially those living in underserved and remote areas.
We believe that the Huntington Academy should fairly serve everyone in the HD community according to their specific needs and aspirations.
We believe that the Huntington Academy should help everyone in the HD community to get proper information to provide better care and overcome the geographical and socioeconomic disparities.
We believe that the Huntington Academy should represent and serve the wider and heterogeneous HD community.
We believe that the Huntington Academy should reinforce a hands-on active collaboration, co-creation and networking between HD organisations, family members and healthcare professionals.
We believe that the Huntington Academy should strive to provide high quality, validated and state of the art contents about care provision in HD.
I’m 79, gene positive in the grey zone.
My son Cédric was gene very positive and passed away at the age of 42.
Currently acting chairman of the board of the Belgian Huntington League (French speaking part of Belgium), I’m an activist pleading for a better support for rare diseases, with special focus on Huntington.
Always putting the emphasis on Huntington as an example how support and cooperation between scientists and families could be organised.
I have a BSc in Clinical and Health Psychology and a PhD in Neuropsychology.
I’ve been involved with the Huntington’s Disease global community since 2007, as a neuropsychologist, researcher and as an active volunteer for different national and international organizations (APDH, EHA, IHA, HDYO, EHDN, HDBuzz).
I’m the Vice-President of the Portuguese Huntington Association and a Board Member of the European Huntington Association.
In 2020, I started to work as Project Manager for the European Huntington Association.
I work for a Huntington patient’s association dedicated to the French-speaking community in Belgium (Ligue Huntington Francophone Belge). I’m working as a communication and project officer in this association since 2018. My tasks are varied, from the traditional community management trough social networks (website, FB, Linkedin, Instagram,..) to organising family events that gather the Huntington community, harvesting audio testimonies for our podcasts, representing our association at conferences and bringing our members to them, participating in transnational projects, developing projects with our volunteers and even to delivering specialized chairs to our beneficiaries’ homes and in institutions. Theses are some of my duties, still looking for a parachute jump.
I grew up as my mother developed Huntingtons disease. As a family we did our best to cope with everything the disease brought to us. For many years we felt isolated and helpless. It was a great relief when we finally got in touch with the HD association and met people who knew and understood. And since then, I have been involved in the community and advocated for awareness, better care and treatment.
I am a member of a Huntington family, my father passed away at the age of 54, when I was 28 years old.
Fortunately my genetic test was negative, and since he passed away, I have dedicated my time and available energies to try to help those who unfortunately have not been as lucky as me and are gene positive.
Since 2014 I have been involved, as a volunteer, with the Spanish Huntington’s Disease Association, accompanying affected families and patients and representing the Huntington’s community at national and international congresses, meetings and events.
In 2021 I started working for the European Huntington’s Association as coordinator of the Moving Forward project for Spain, to give specific support also to people at risk or pre-symptomatic carriers.
I have a BSc in Natural Sciences, and since 2016 I have been part of the HD community in different roles, from molecular researcher to fundraising events planner with the national organization in Puerto Rico.
When I moved to Spain in 2020, I became a volunteer at ACHE, and in 2024 I joined the team in a role where I get to support families and patients. This same year I also joined the EHA, where I get to keep the community informed with the latest updates on research and other relevant topics.
It doesn’t matter the role, I always have one goal in mind: improving access to a better quality of life for the HD community.
I joined the HD community in 2014 as a volunteer, hoping to contribute to BHA’s development in terms of raising awareness about Huntington’s Disease in Bulgaria, providing crucial services to affected families and growing the nation-wide HD network. For the 10 years that have passed I am happy to say that this community and the work of BHA has opened up a whole new world to me; I got to meet and work with many people who possess resilience and personal resources that I dare say are strong enough to counteract any genetic disability.
Today I work as a psychologist at BHA and consult people with different rare diseases and their family members. I am a part of the EHDN Psychological Interventions and Approaches working group and I strive to follow a more holistic approach to consultation and psychotherapy, taking into account the inseparability of the mental world and the body.
I am one of the founders of Bulgarian Huntington Association which was established in 2014, and I became its chairman in 2019. Since 2012 I have been working in the field of mental health, and since 2015 I have been actively involved in the creation, management and project coordination for BHA, as well as a director of the psychosocial support and rehabilitation programs. With my work I aim to enable patients with rare neurological diseases to have access to holistic care, for which BHA has won an award for innovative social service from the Metropolitan Municipality.
For the past 10 years we have actively collaborated with several European partners in care for rare diseases and developing our mental health program for people living with various rare diseases, their families, including and parents of children with rare diseases. I believe that access to specialized support services and educational and therapeutic resources can significantly increase the quality of life of patients with rare diseases and maintain their good functioning after diagnosis and in life with it and am motivated to keep working for the implementation of such an approach in Bulgaria.
“I wish I’d started working with Huntington’s patients sooner, because i’s really exciting. And I think we’re a great team, and I think we do our best to meet the challenges that come our way. Really, for me, it’s a great source of investment and satisfaction. We’re getting some really good care and it’s great. I want to keep going, and if I’d known it was this good, I’d have done it sooner!”
“You must really listen to what’s going on in the field, because theory is very important to know what you’re getting into, but one patient is not the same as another, depending on their living environment outside the home, their life history and other factors that cannot be generalized. It’s the reality on the ground that makes it easier to adapt to the people you’re caring for. You have to be in contact with patients, carers and families, because they’re the ones who have to manage and live with the disease every day.”
“I’m happy to be working in this field in Belgium, because there are great collaborations with other centers and with the Huntington League. We share information and passion. Networking is stimulating, and it enables us to tackle challenges together. We don’t feel alone, and so we don’t cry over our helplessness. We’re always going to find a solid shoulder to stand on that can really welcome us and help us bounce back.”
“I’m there more to support and maintain a link as best I can for the patients. Knowing also that the challenge is to bridge the gap between them and their families.”
Born in June 83, living in the Liège region, married with 2 children.
Employed in a ministry of the Belgian federal administration.
Member of the French-speaking Belgian Huntington’s League. Not a carrier of HD.
Father and sister affected by the disease and both deceased.
I am Isabel Antunez, I am 59 years old and HD came into my life through my spouse. When I was 19 years old, I met my father-in-law and my father-in-law’s mother, who had a reputation for conflict and bad temper, but it was never known that she had the disease. Diego’s grandmother had 4 children, Diego’s father was diagnosed in 2005, when he was 70 years old, although he had been showing symptoms for a decade before that. At the time, my oldest son (David) was 16 and my youngest daughter (Amanda) was 14. Diego took the test when he learned his father’s result, however, he went 10 years without knowing the result because he didn’t go to collect it.
After thirty years of marriage, I started to notice the changes in Diego’s behaviour when he was around 50 years old. However, Diego did not want to know his results, until our eldest son started to show symptoms. At the age of 28, David began to express doubts about having the disease because of difficulties at work and encountering certain symptoms. In 2019 David was no longer able to work, aged 33, and a year after his early retirement, he returned home with us to receive care due to the progression of his disease. My husband Diego, on the other hand, despite being a carrier, and being over 60 years old, is still active at work.
I have been a member of ACHE since 2018 and every month I participate in the caregiver’s café that they organise to support family members.
“I am a member of the Spanish Huntington’s Chorea Association as I have a family member affected by the disease, which has meant that I am a regular attendee at the caregiver’s café. My curiosity and interest in psychology has drawn my attention to the large amount of information and knowledge that carers have, based on their experience with the disease. This has led me to consider the need to structure this knowledge in order to share it with the rest of the community and, above all, to make it available to people who are confronted with “Uncle Huntington’s” for the first time. Given that this purpose coincides with the Huntington Academy study, I am delighted to be able to collaborate and contribute what I can to achieve the objectives set out.”
“I am a speech therapist specialised in dysphagia and swallowing disorders. Thanks to my specialisation, I learnt how to search for information and update my reading in order to guide my patients. My time at ACHE allowed me to learn to read people and to decipher their feeding abilities.
People with HD and their caregivers put another dish on their table and invited me to learn from their cuisine. Every sip and every gulp was for me the best of scientific articles. Today I am proud to have learned about this cuisine that allows me to continue to help more people.”
“I work as a neuropsychologist in the Movement Disorders Unit of the Neurology Service of the Hospital de Sant Pau in Barcelona, where I have been involved in the care and research of Huntington’s disease for more than 15 years. I am one of the coordinators of the monographic consultation dedicated to HD in this hospital, and I also manage the Neuropsychology consultation of minority diseases with movement disorders from where the process of genetic counselling for people at risk is carried out.
I am coordinator of the Cognitive Phenotype Working Group of the European Huntington’s Disease Network (EHDN), where I have also been a member of the bioethics and scientific advisory committee (SBAC) of the same network. My involvement with HD has also led me to set up different international rotation programmes in Spain for Latin American HD professionals and to maintain a close relationship with different family associations at national and regional level.”
I am a psychologist and private psychotherapist in the city of Valencia. In my family on my mother’s side there is a risk of having Huntington’s disease. At the beginning of 2018, I took the genetic test and fortunately my result was negative. I have done several masters and trainings. As of today, my psychotherapeutic practice focuses on adults, couples and adolescents, and I also provide psychological care and counseling to people with Huntington’s disease. I collaborate with the Moving Forward project of the European Huntington’s Association, as well as with the Spanish Huntington’s Association and the Valencian Huntington’s Association. You can find more information on my website www.fcoiruela.com.
I am Rudy Vera, Argentine-Spanish, living in Spain. I collaborated in the foundation of the Argentine Association for Huntington’s Disease (APAEH) in 2003. Since 2004 I have been a member of the European Huntington’s Disease Network (EHDN), attending all its congresses as a caregiver or as a speaker, and I am also part of their Physiotherapy Working Group. I have collaborated with the Spanish Huntington’s Disease Association (ACHE) for a few years since 2005. I have also done walks for carriers, family members and researchers at the European Huntington Association (EHA) Congresses in Vienna, Sofia, Bucharest and Blankenberge. I learned about Huntington’s disease by taking care of my dear wife Marina from 2003 until her passing in 2024.
For 20 years, I have been taking care of my wife Carmen, who is diagnosed with Huntington’s disease. I have a degree in Physical Activity and Sport Sciences and I was a professional basketball player for 15 seasons in Spain in the ACB League and sports commentator in Canal Sur Television. Currently, I work as a Physical Education teacher in Seville, Spain. I have written the book “Vivir con ella, un paseo por la vida” (Living with her, a walk through life ), and I am also responsible for the blog www.vivirconella.com and the YouTube channel “Vivir con ella”, from where I try to give visibility to different aspects of living with Huntington’s disease. I have collaborated in the foundation of the Andalusian Association of Huntington’s Disease (AAEH). I have also participated in different conferences and talks to share my experience as a caregiver, both nationally and internationally with organizations such as the HDYO and the European Huntington’s Association (EHA).
I am Lola, I am 62 years old and I am the mother of Aida, who at the age of 14 started to develop symptoms of the juvenile variant of HD. We discovered that the disease was in Aida’s paternal family when she was just a baby. Aida was always aware of her father’s HD progression until he passed away when she was 16 years old. As a mother who took on her care and upbringing alone, I have always tried to help Aida lead a normal life within her circumstances, studying, doing extracurricular activities, playing sports and going to events such as the end of school trip with her classmates 1 year ago. Aida is now 24 years old, and since last year she has had to use a wheelchair, needing support for all the basic activities of daily living. Since Aida’s father received her diagnosis I have always been involved with the associative movement and I am currently on the board of the Andalusian Association of Huntington’s Disease (AAEH).
I have a degree in Occupational Therapy from the Complutense University of Madrid, a Master’s Degree in Motor Neurocontrol and an Expert Degree in Hand Therapy from the Rey Juan Carlos University. I have been practicing as a health professional in the field of occupational therapy for more than 15 years and I have developed my work mainly with patients with neurological pathology. Since 2018 I work as an occupational therapist for the Spanish Huntington’s Korea Association.
I am Sandra Megias Barbero, I am 50 years old and my family, on my father’s side, is affected by Huntington’s Disease, so I know very well what it means to live with it. My father passed away after 15 years of symptomatology and currently it is my sister Mª José who is dealing with an advanced process of the disease.
As a possible carrier of the disease, I made the decision not to take the test until my son came of age. After a long process of preparation and emotional support, 2024 was the year I finally took the genetic test and, fortunately, neither I nor my son inherited the gene.
I have been an active member of the Huntington’s Collective of Catalonia for more than 25 years and, currently, I am Vice-President of the FEPAEH Spanish Federation of People Affected by Huntington’s Disease and a member of the Board of Directors of the ACMAH Catalan Association of Huntington’s Disease. Both positions allow me to continue working in the defence of the rights of our affected families and in the promotion and encouragement of public care services that meet their needs.
I am a physical therapist, neurologist and son of a Huntington’s disease patient. During my neurology residency I had the opportunity to learn from leading HD professionals. I am a member of Enroll-HD and have participated as a co-investigator in the TEMET-HD trial. Currently, I am doing my PhD with the project “Cohort study on the evolution of HD in patients with intestinal dysbiosis”, A study that aims to determine the influence of the intestinal microbiota in the evolution of HD.
Iva Ivanova has been part of Bulgarian Huntington Association since 2014. Her main work at BHA is related to rehabilitation, information and counseling of people with rare diseases. She participates actively in projects, initiatives and summer camps, as well as in international physiotherapy working groups organized by the European Huntington’s disease Network. She graduated from the “Rehabilitation” specialty at the Medical University-Sofia and specialized in “Medical balneology and rehabilitation”. Since graduating, Iva has been working with various rare diseases such as – Huntington’s Disease, various types of Ataxia, Behçet’s Syndrome, Recklinghausen’s Disease, Sarcoidosis, Cystic Fibrosis, Syringomyelia. She specialises in neurorehabilitation but also prepares recovery programs according to individual needs of patients.
I am a licensed dental hygienist with over 40 years of experience, currently working at Mun-H-Center, a national orofacial knowledge center for rare health conditions. Throughout my career, I have had the privilege of treating patients at various stages of Huntington’s disease (HD), some of whom I have followed for over 20 years. This has provided me with extensive experience in working with and treating individuals with this complex and challenging diagnosis.
My passion for Huntington’s disease began when I first met patients at the clinic, and since then I have been deeply committed to improving the lives of these individuals. I work closely with a dentist who has significant experience in treating HD, and together we provide the best possible care for our patients. I am also the chairperson of the Swedish Huntington’s Disease Association , where I have gained a deeper understanding of the challenges faced by patients, gene carriers, families, and healthcare professionals through meetings, family camps, support groups, and educational events.
I am dedicated to raising awareness about Huntington’s disease and ensuring that individuals with the condition receive the best possible care and treatment. Through lectures, written works, and educational efforts with colleagues, I gladly share my knowledge and experience. I believe it is important to understand that everything in the human body is interconnected, and that each part affects the others – something that is particularly important when treating individuals with complex conditions like HD.