Once I finished my High School studies, I then started my bachelor of accounting degree in 2015. While completing my studies I worked part time as an accountant for a couple of years. In Late 2018, I then graduated University and moved to my closest capital city (Brisbane, Australia) where I’m now working full time in the banking industry.
My HD gene starts with my grandad and his family. It’s believed my grandad inherited HD from his father (my great grandfather), although we never actually knew this at the time as he passed away before any symptoms arose. In the 1990’s, my grandfather developed symptoms and it was at this time, my family and parents learnt about HD and understood that my mum was at risk. When my mum was in her early 40’s she started to developing twiches in her facial expressions but it wasn’t until she was 47 where her HD symptons really showed. Later she traved to Brisbane to complete a physical exam and here they confirmed that she had HD.
I started my genetic testing process when I was 18 (later 2015). After multiple meetings with a genetic counsellor and phsychologist I then completed my blood test to determine if my DNA carried the HD gene. It was in June 2017, when I had a video conference meeting, where I was told that my CAG repeats, and as it was over 40, I am both carrying the HD gene and will develop symptoms at some point in my life.
I am an active member with the HDYO ambassador program and I’ve also involved with my local HD community (Huntington’s Queensland). I’ve attended the Australian youth camp in 2019 where I gained knowledge and friendships. I’ve also recently completed a news interview about genetic testing through IVF for Huntington’s disease.
I’m really wanting to get more involved with the HD community both in Australian and around the world. I’m looking forward to learning more information from different international communities, charities, and other stakeholders. It would be great to also learn from other people, not only just about their personal experiences with HD but other important information like clinical trials and medicine.
Nationality: British, Northern Ireland
I currently work for Huntington’s Disease Association Northern Ireland as their Youth Awareness and Events Officer. I hold an Hons degree in Leisure and Events Manage with Professional Practice and have worked for HDANI for 2.5 years gaining other training relevant to my role.
My father was diagnosed with HD when I was 15, I became a young carer and now he is 54 and lives in a nursing home. I did start the testing process when I was 18 but due to a variety of circumstances, I decided it was not the right time for me to find out if I had Huntington’s Disease or not. Í am currently 28 and untested for HD living the most positive life I can, I have come to terms with this and am enjoying life as best I can.
I have been involved with the HD association in Northern Ireland for 10+ years as a service user, volunteer, board member and now a staff member, I truly love the work that I do and enjoy helping the HD community and giving back to the people that have and continue to support me through my HD journey.
I have had the pleasure of attending many HD events here in Northern Ireland, and also the HDYO camp in 2016 and the HDSA Convention in 2019. I enjoy hearing people speak about HD, their experiences, medical professionals and of course meeting people from the HD community around the world.
In 2016 I started the #ImNotDrunk Lifestyle blog, sharing my experiences of growing up in a HD family and dealing with everything that is thrown at you. I am made amazing friends on social media from around the world, spoken at events and listened when people needed to talk. I hope that I can continue to do this and help those coming along in their HD journey.
I have joined the HD-CAB to give back to the HD community and get more involved I am excited to learn and grow and hope I can bring fresh ideas and experiences to HD-CAB. I have turned one of the most negative experiences in my life into my career and hobby, I hope that I can continue to speak out about Huntington’s and connect with the community.
Nationality: Swedish & Colombian
Bachelor of Philosophy with a major in Spanish, in 2022 I’ll be a Fine Arts student here in Colombia.
I come from an HD family on my father’s side. I grew up with a sick uncle and later on my dad as well.
I’ve been in the Swedish Huntington Association since I was around 10 years old, and I’m still involved both in the country and globally as well.
With my previous experience with HD, the communities, pharmaceuticals and the academic groups, I feel like I can advocate in a very helpful way for those involved. Since I’ve always been active, I do not only have my own perspective of how to handle, work and educate about HD. In my backpack I have other people’s perspectives of HD, their stories and what they’ve found out being involved with this disease. Especially the HD related camps and conferences I’ve attended both at home and outside, have taught me to see HD from a lot of other people’s shoes and that I can be capable of talking for them now that many of them do not have a chance to do it. So I volunteer to make our voices heard from all over the world.
Nationality: North American
I have spent most of my career in serving others to live better lives—from being a special education teacher, to corporate learning and development (job training and leadership development), to leading HD Reach, a non-profit dedicated to helping families live well with Huntington’s disease. I’m fully retired now, and am staying active through volunteer work, family and friends.
My father had Huntington’s disease and became ill when I was 11 years old, at a time when there was no test and no definitive diagnosis until after death. I have two siblings that have HD, one succumbed to HD in 2019. I’ve tested negative, but have spent almost all my life either being at risk, or helping to care for my family members with HD. HD has impacted almost every decision I’ve made in my life.
I really became active in the greater HD community through HD Reach, first as a board member, then as Executive Director, and now a supporter of access to care and research. I attended HDdenNoMore at the Vatican, and saw the power of a group coming together to bring global awareness of HD. There are such great, courageous people in the HD community.
I’ve seen the hope and acceptance that can be brought about by a strong community working together to find answers to HD. While focus on access to care is important, research and clinical trials will bring about treatments that will alter the course of the disease. It is important that these researchers truly understand the needs of the HD community and I am honoured to be be a part of it.
Nationality: County Kildare, Ireland
I am now retired from the Department of Justice where I registered legal title to property for over 30 years.
I am a board member of the HD Association of Ireland and am very engaged in the HD community and work tirelessly in promoting awareness of HD and actively support other Irish HD family members.
For over 20 years I cared for my husband at home but now he is in an advanced stage of HD and is cared for in a care facility. We have three children.
My motivation is my family.
My hope is to assist in any way I can towards finding a treatment/cure for Huntington’s Disease.
My aim is to a voice and advocate for HD families.
Honours Bachelor of Arts – Psychology
Certified Internal Auditor (CIA)
Internal Auditor for the National Research Council of Canada (Federal Government)
I am the primary caregiver to my mother who has HD. Several of my family members also have HD, are gene positive or are at risk. I have supported my mom through two recent clinical trials (Pride-HD and Roche/Ionis – ASO trial).
Former member of the Huntington Society of Canada’s (HSC) Clinical Trials Stakeholders Group.
Supported HSC in developing its first HD Clinical Trials Map.
Member of Young People Affected by Huntington Disease (YPAHD) and the HSC Ottawa Chapter.
I would like to help bring a voice to HD patients, including those who have challenges advocating for themselves. I bring to the table personal experience in supporting my mom through two clinical trials. I am passionate in my desire to make a difference in the HD community, and I see clinical trials as the most promising path forward.
MEng Software Engineering – Research Assistant and Software engineer
Dad is HD positive, untested myself.
I’ve been involved with the Scottish Huntington’s Association (SHA) Youth service since 2014, first as a young person and now progressing more into a Youth Ambassador role. This role involves being available for interviews for the SHA, alongside providing peer support to many other members of SHAYP. I’ve been involved with numerous fundraising efforts such as trekking part of the Great Wall of China, creating and branding a fundraising craft effort called “Step up to HD”, and abseiling of the side of the Falkirk wheel, earning myself the SHA young fundraiser of the year award in 2019. Alongside attending the EHA 2019 conference in Bucharest, I’ve recently been involved with the HDYO as an Ambassador, collaborating with other ambassadors and charities around the world to help raise awareness and share useful advice.
As a Youth Ambassador, alongside speaking with many other young people at events, I want to ensure that young people’s voices are represented within the drug development pipeline, and that the process is fair, inclusive, and accessible to all.
I am an accountant, retired from an international oil company and currently a professor at the National University of Buenos Aires.
My husband had HD, inherited from his mother, he died 8 years ago, after around 16 years from diagnosis. My mother-in-law had been diagnosis with Parkinson at that time.
We have 3 children at risk. They do not want to test by the time being.
Two of them have girlfriends, one wants to have children with treatment, the other wants to adopt, my daughter, the oldest one, has no boyfriend.
I am the secretary of the Argentinean HD organisation (APAEH) and the International Huntington Association representative for Latin America.
I am concerned about my family and all the families that depend on APAEH
Nationality: North American
Currently a student at The Ohio State University pursuing a career in finance and corporate development.
My mother and aunt are HD gene positive. My grandfather recently passed away due to Huntingtons Disease. I am old enough to test and am strongly considering testing. My sister is also at risk for the HD gene. My brother was tested gene negative in utero.
Long-time volunteer for HDSA both locally and nationally. Keynote speaker at multiple charity events for HDSA, Board member for the North East Ohio chapter. Regional Lead for the great lakes region for the HDSA’s NYA.
I see my mother and watch her every day become somebody she is not. I watch her gain realization that some things are not the same or normal, and I see the toll that takes on her mentally. To me, my mother is someone who has taken this world by the reigns and made a name for herself with a solid reputation. She is someone whom people have come to love and cherish and appreciate. To watch someone so alive and funny and driven, slowly take a turn for the worse, and realize it’s happening at the same time breaks my heart. I want to be as much a help as I can to not only ease her and my family’s struggles, but ease the struggles of families around the world who are watching the exact same thing happen to them. Too many brilliant and bright individuals have lost themselves in the clutches of this disease, and I feel that the world would be much better off with those people still in it.
I have a Bachelor of Science degree and worked as a research assistant.
I am gene positive, presymptomatic.
After my genetic testing 14 years ago I slowly got involved in the HD community. I have volunteered for many studies, such as Enroll and HD clarity. I joined the board of the EHA in 2016 and the Scottish board in 2017. I’m involved with other committees, national, European and international.
I believe knowledge is power. I don’t have control over how this gene will affect me but I can have some control/input over what is available in the future for this disease. Patients/carers are vital in the whole research and drug development process. I was originally involved in HD-Cope and witnessed the power the community has and I’m priviledged to be part of this new initiative.
Bacherlor’s degree in Mass Communications (waiting for title due to January 2022).
In Venezuela free press has been compromised por the past 21 years due to the politics of the current goverment, that’s what at the bigining iknspired me to study this career and specialize in Journalism.
However, during the five years I spent studying, I found out I am more passionate about Corporative Communications. I enjoy discovering or giving a personality to a company, figuring out what’s best for it, creating manuals and handling crisis situations all in the Mass Communications context, in fact, at the moment that is the area I am currently working on and I have a job as a
Coordinator of Communications and Processes (WHICH I LOVE!).
I come from an HD family. My grandmother (father’s mother) fought with Huntington’s for nearly 17 years. My dad is a carrier, he has not shown any symptoms yet (he’s currently 56). I have not gotten tested and I’ve decided that I don’t want to do so, I just don’t want to read that page of the story of my life’s book.
I have previously participated in a congress here in Latin America with other young people impacted by HD, other than that I am part of the group of people (families) that are somehow involved with AVEHUN (Asociación Venezolana de Huntington).
Truth is that to me the fact that HD, a rare rare rare hereditary disease, is in my life is no coincidence at all. I feel the responsibility to be helpful to this community that is commonly so neglected because of the ignorance that surrounds this disease. I want to help, I want things to be better for patients and their families and any chance I have to do so, I am beyond than happy to take it.
From 2007 to 2012 I did my degree in Journalism at the Universitat València. In addition
to journalism, I felt that I was also passionate about the profession of Social Work, so
from 2014 to 2018 I studied it at the UNED.
Right now, I really enjoy merging both degrees, using journalism to publicise all the social
injustices that social work aims to eliminate
I belong to a family with Huntington’s disease. In my family we spent many years taking
care of my grandmother, with HD. Now we love my father, we take care of him and
accompany him in this hard process.
I am part of the Valencian Huntington’s Disease Association, AVAEH.
Also our association, together with 10 others, belongs to the Collective of Huntington’s
Disease Associations of Spain.
I believe that HD families and the HD environment must unite so that our demands and
needs are heard. It is important that our point of view, as first person experience, is the
basis of all policy and scientific research.
Nationality: Egyptian / Swiss
I come from a communications and advertising background and currently work in media production. My wife and I founded Hekaya Productions where we offer a wide range of video and design products for our clients such as event coverage, social media ads and cards, posters, explainer videos training videos, short documentaries, interviews and much more.
My mother fought Huntington’s Disease for 20 years. Unfortunately she passed away last year on October 3rd, 2020. May she rest in peace.
I’m currently a member of the board of HD-CAB and admin of the Huntington’s Arabia Facebook Page
To spread awareness, make a change and contribute even in the smallest way to push the hunt for a cure forward.
Nationality: North American
MSN, Neonatal Nurse Practitioner
Parent to Brian Walsh who had JHD at age 10 and died at 31. We were able to care for him at home
Support the local Center of Excellance
To support others on their journey with JHD.
Nationality: South African
Background in business management and leadership development, Harvard Business School Alumnus. A businessman focussed on private equity.
From a HD family. Gene negative.
Over the past 10 years. European Huntington’s Disease Network, Young adults working group. Previously an HDYO board member. Summited Mount Everest in 2016 to raise awareness for Huntington’s Disease.
To be a consistent part of the Huntington’s community. To continue Huntington’s Disease advocacy partnering with the leadership of HD-CAB.
Nationality: North American
While being my father’s caregiver I authored a book “When Given Lemons” and began producing and hosting a weekly podcast, Help 4 HD Live. The podcast has over 125,000 listeners worldwide.
In 2006, I started fundraising with HDSA. I became President of the NC Chapter of HDSA and eventually a member of the HDSA National Field Committee, where I supported the Southern Region of the USA.
I became my father’s caregiver and legal guardian from 2015 until his passing in January 2021. I am gene positive myself.
I am a very vocal advocate for the HD Parity Act, and drive twice a year to speak with members of Congress. I assisted in law enforcement education by working with NAMI to incorporate the training into the Crisis Intervention Training for law enforcement. I have been a Research Ambassador and a Patient Advocate, and participated in several observational studies, including PREDICT-HD and most recently PREVENT-HD.
In 2014, Lauren was the HDSA Person of the Year
I am a screenwriter and director of both fiction and non-fiction films. Having completed my undergraduate degree with a specialisation in Film from the Srishti Institute of Art, Design and Technology, I worked on a spectrum of genres from environmental documentaries to commercial ad-films. More recently, I completed my MFA in Film and Television from the Savannah College of Art and Design.
My grandfather, father and aunt suffered from Huntington’s Disease, with my father succumbing to the disease in 2016. I tested Positive for Huntington’s Disease in 2016 at the age of 23.
I have worked with multiple HD families in India, shooting a documentary feature length film Piano Fingers which traverses the lives of Huntington’s patients and their struggles and journeys circumventing the societal landscape of India. I have also been closely tied to the Huntington’s Disease Society of India (HDSI).
Huntington’s Disease is an inheritance within my family and I believe working for it is not only to honor my father and other family members, but also driven by the dream of achieving a better quality of life for Huntington’s patients in India and around the world.
She has a degree in Business informatics and is employed by Daimler Truck AG as an IT manager.
The personal experience of growing up in a family with Huntington’s disease motivates her to advocate for families with Huntington’s disease
Since 2017 she has been the president of Deutsche Huntington-Hilfe e.V., the patient organization for families affected by this disease in Germany.
Raising public awareness of Huntington’s disease, finding more affected people, who currently still live in isolation, keeping them well informed and preparing access to existing support are just as important to her as networking with doctors, researchers and pharmaceutical companies to significantly improve care for all people in affected families.
I did my undergrad education back home in Pakistan with a Bachelor’s degree in Biotechnology. I had the privilege of studying for my master’s in Neuroscience across two institutes in Germany and the Netherlands. Currently, I am a PhD student researching the molecular underpinnings of Huntington’s Disease at the University of Toronto in Canada.
HD runs in my family. My mother, 2 aunts and grandmother suffered from HD. My siblings and I are at risk for developing it.
I have been working to create a Pakistani HD patient organisation that the Pakistani HD community can look to for guidance, resources and support services. Previously, I had helped set up research collaborations and testing services within Pakistan for HD. I also volunteer with HDYO as a member of their research committee.
I believe there needs to be a dramatic push for equitable access to HD trials globally and it is critical to include younger individuals in this process.
I am a chemist by training (MSc) and I did a PhD in pharmaceutical analysis. Currently, I work as an assistant professor at the Vrije Universiteit Amsterdam. Here I do research into the structure and quality of large molecules, mainly pharmaceuticals. I also teach chemistry, clinical chemistry, and pharmaceutical analysis. Lastly, I coordinate a MSc specialization with about 160 students, where I am responsible for the content and quality of the program as well as student well-being.
I am a HD gene carrier, as are my mom, my late grandmother, and many other members of my family. Safe to say, I grew up with HD.
I am a board member of the Dutch HDA, member of HD-COPE, and member of the steering committee of Roche’s tominersen phase III clinical trial. In the Netherlands I focus on youth and science, as two separate topics (but also together). Outside the Netherlands I liaise with EHA to ensure that we actively contribute to European projects, that needed connections are made and knowledge is shared. Besides that I try to raise awareness by doing public speaking/writing about HD.
Coming from HD-COPE I have seen the impact an organized community can make in clinical trial design and execution. Taking this one step further, as HD-CAB will do with the additional focus on availability of treatment, adds even more power to our community. The two goals go hand-in-hand, and we have an obligation to raise our voice and tell how we think about these things. It is our opportunity to be heard, as companies and legislators are more willingly to listen. And that is important step forward in a rare-disease community!
Nationality: North American
Master’s in nonprofit management and work professionally in the health space as the Associate Director, Community Development for Health Union. Additionally I am a motivational speaker.
HD gene positive, pre-symptomatic patient leader whose mom battled HD for 17 years before passing away in March 2015.
At the age of 15 I learned about my mother’s diagnosis of Huntington’s Disease (HD). Five years later, I went through genetic testing and found out I tested positive for HD and may end up like my mom one day. I have been an active member of the HD community for over 12 years, taking on leadership roles with HDSA and HDYO. In 2018, I did a TEDx talk on my genetic testing story which opened up more opportunities for speaking engagements and interactions with different stakeholders in the health community. To learn more, head to www.sethrotberg.com.
I volunteered to be an HD-CAB Team Member because I know how important it is to get the patient perspective early and throughout drug development. I want to be able to help companies understand the young adult perspective and the importance of treating HD patients prior to clinical diagnosis.
After my degree I worked as a K9 dog handler for almost 15 years. Then I made a complete change, studying Event Management and Interior Design in Brisbane Australia.
Huntington’s Disease came late in my life due to lack of knowledge and a culture of silence on my father’s side of the family. My Dad is no longer with us. For a long time both my Mum and I cared for him with all that entails. My two brothers and I have undergone genetic testing and all 3 of us are HD positive. We are now living with early symptoms and therefore it becomes extremely important for me to be involved.
Since 2007 I’ve been involved in the community. Among other things my brother and I created the first Swedish HD website. Early on I came in contact with an HD scientist in Lund who made it possible for me to get in touch with EHDN and through them I got a scholarship to go to my very first HD congress in Vancouver, Canada.
Furthermore, I have continued to work in Europe as an HDYO ambassador and alongside the Swedish HD association.
I believe I have a lot to contribute when it comes to the disease. I know what it is like to be both a relative and a caregiver. I know what it’s like to go through genetic testing and testing positive with all that it means for both me and my two siblings who are also going through exactly the same thing.
It’s so important to belong to our strong HD community and I definitely believe I will learn a lot about trials, research and regulations.
Nationality: North American
Pediatrician/ Neonatal specialist
Our adopted son Brian had Juvenile HD beginning age 10 and died from HD at age 31
I work with local chapter and Vanderbilt COE
Know that a cure is around the corner want to increase awareness.
Coming from an HD family, Xi has been actively involved with the HD community in China since 2013. In 2016, Xi founded Chinese HD Association. Since then, she has led programs for HD awareness campaign, support network for HD families and advocacy for accessible care for HD patients in China.
From an HD family.
Founder /President, Chinese HD Association
To bring affordable and accessible treatment and care to HD community.
I am an economist, for the last 10 years my main job is a full-time mother of 2 kids.
I am an HD family member, have seen 3 generations with HD – grandmother, father and aunt, sister
4 years as a volunteer in the Russian HD community, since July 2021 – Russian coordinator of the EHA project “Moving Forward”
It is my sincere hope, that the membership in HD-CAB Team will allow me to represent the voice of the Russian HD families in terms of participation in HD clinical trials.