Nationality: Autralian

Angela

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

Ashley

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: Colombian

Ana María

Bachelor’s Degree in Nursing
Postgraduate Diploma of Palliative Care in Chronic Progressive Diseases

I come from an HD family. My grandfather passed the gene on to 3 out of his 5 children, including my father who began experiencing symptoms around the age of 55. For 5 years, starting when I was 25 years old, I became his caregiver until his last day. In the company of my aunt (my dad’s sister without HD), I also had the opportunity to care for one of my uncles who had no children or partner. My dad and my uncle passed away in 2021 from COVID-19. They were in the final stages of the disease and living in a nursing home. I am currently at risk and haven’t taken the genetic test yet as I find peace in not knowing if I have the gene.

I have been a member of ACOLPEH (Asoc. Colombianos por la Enfermedad de Huntington) since October 2022 when I attended the Latin American Huntington’s Disease Conference in Barranquilla, Colombia. In January 2023, I became an ambassador for HDYO and started getting involved with the Huntington Society of Canada and Société Huntington du Québec, where I currently reside.

I aspire to be the voice for those affected by HD – patients, caregivers, and families alike. My goal is to learn about potential cures and share comprehensive information, ensuring that the profound impact of HD on families is considered in developing new treatments and holistic management approaches.
My life purpose is to uplift and support my HD community while honoring my family, and striving to create positive changes in the quality of life for those affected by this condition.

Nationality: Swedish & Colombian

Anne Elizabeth

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: Dutch

Annemarie

After my pre-university education I was unfortunately not able to enroll in my preferred studies. This was due to numerus clausus rules in place at the time. So I started working at a local dental clinic while studying to obtain the required diplomas.

After a few years I became practice manager and I still work in this position today. 

My husband Jean is 59 years old and was tested HD positive in 2017. His mother suffered from Huntington’s disease as well and passed away in 2017. 

Along with family and friends we organise events to collect funds for HD research and raise awareness.

At the moment, my husband is a participant in a clinical trial.

I volunteer to be an HD CAB member because I hope I can provide, as an informal caregiver, the practical information and feedback that is valuable to doctors, researchers, regulators and pharmaceutical companies.

Hopefully I can contribute as an expert by experience. 

Nationality: North American

Ann

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

Anne

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. 

Nationality: Canadian

Allison

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.

Nationality: Scottish

Bruce

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.

Nationality: Welsh

Carly

I have recently graduated with a first class honours in psychology and counselling and I am furthering my career aspirations with an  MA psychotherapeutic practice programme. I would love to use my difficult experience to help and support others who really need it. 

I tested positive for HD at the end of 2020 something I’m still processing and on the road to acceptance. My dad has HD and is currently symptomatic 

After struggling to come to terms with my diagnosis, I found HDYO who truly saved me. I became an ambassador in May 2021 and continue to do all I can to support the community because I know first hand how difficult times can be. I have also recently become an ambassador for the HDA in England and through both organisations had public speaking opportunities to raise awareness.  In addition to this, as part of my undergraduate dissertation this year explored the effects on young people impacted by HD, interviewing six other young HDYO ambassadors.  It is now being published.   

I think it’s an extremely important role to be a part of. Advocating for not only myself and my family but for the whole HD community in ensuring clinical trials are how they should be for individuals impacted by HD.  I’m excited to be part of the group

Nationality: Argentina

Claudia

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: British

Charlotte

I am a Human Resources Professional (CIPD Accredited) for a busy NHS mental health trust in the UK. I get to work with lots of incredible medical professionals, including the clinic who look after my mum! I started my career by obtaining a BA Honours Degree from Northumbria University.

My mum is in the middle stages of the condition, my nana had the condition and passed away in 2021 after a 20 year battle and I found out in March 2023 that I carry the faulty gene after a genetic test. I’ve cared for them both pretty much my whole life. 

I am a passionate advocate, an ambassador for HDYO and HDA in the UK. I share my story and content online, using mostly instagram and TikTok (thehdhun). My family are also heavily involved in the community, with my dad recently being successful in becoming a board member of HDYO. 

It’s incredibly important to me to do everything I can, to support an effective or maybe even cure one day. I recently took part in an observational study and lumbar puncture and it opened my eyes to the world of research. There’s so much hope in science and the future and to play a part in that, for me is incredible exciting. I’m looking forward to meeting the pharmaceutical companies and researchers working hard to change my prognosis and others. 

Nationality: Italian

Claudia

I have a Bachelor’s Degree in Educational Science and I worked in schools and youth centers.

I currently work for Vibes Association, which teaches skateboarding and juggling while contributing to several local projects focused on inclusivity, environment, sport and respect.

My grandmother had HD and my mum was diagnosed when I was 8. I learned about HD when I was 18, when my family told me about it. I currently live with my mum and dad and I have a sister and a niece. I never started the testing process and I feel I’m ok being untested at the moment.

I am involved in Huntington’s Onlus which is an Italian association since I learned about HD, and I became an HDYO Ambassador in 2021. I shared my story for the first time in 2022 EHDN Congress in Bologna (Italy).

I volunteered to be an HD-CAB Team Member because I want to make sure that the HD perspective is well explained in all its differences and singularities. I feel that creating a network between young people affected by HD is fundamental in order to get their viewpoint about HD and what can be done or improved.

Nationality: Scottish, 

Portuguese, Canadian

Dina

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 joined the board of the EHA in 2016 and the Scottish board in 2017. I have volunteered for many studies, such as Enroll and HD clarity.  I participated in the clinical trials update session at the 2022 EHDN congress in Bologna and am now the EHA representative on the EHDN executive committeeI was involved in EFNA’s focus group on gender and equality for those living with neurological conditions.  I continue to be involved in IDEAFast (Identifying digital endpoints to assess fatigue, sleep and activities in daily living in neurodegenerative disorders and immune-mediated inflammatory diseases ) as both a patient specialist and part of the EHA

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.

Nationality: Venezuelan

Emily

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. 

Nationality: Welsh

Gareth

Twenty years working for local Government within finance and performance. Worked recently for a number of Healthcare companies before taking a break t take part in a HD trial.

My Grandmother passed away with HD; my Aunt has HD; and I tested positive for the gene two years ago.

I attend my local HD clinic regularly and am currently working through the process of a HD Clinical Trial.

Very keen to get HD out there and to raise awareness. Also want to play a part in the research and development that will hopefully one day erase HD.

Nationality: British

Gemma

I have a BSc (hons) degree in Animal Behaviour and Welfare. I work in the animal welfare sector and specialise in cat welfare. I currently work for a cat welfare organisation in the UK. 

I’m 28 and I tested positive for HD in April 2022. I’m currently presymptomatic. My mum was diagnosed with HD when I was 14. Mum was the first generation of our family to have HD (my grandpa had a CAG of 29 and it expanded to 45 when passed down to my mum). I was a young caregiver for my mum and I’ve cared for her throughout my life, but 6 years ago she moved into a care home. Mum is now in end stage HD. 

Although I’ve been quietly involved with the HD community for 10 years, after testing positive I have found it empowering to throw myself into advocacy, social media, fundraising and volunteering. I’m an ambassador for the HDYO and the HDA. I also participate in HD Voice, and I’ve really enjoyed sharing my story with researchers and helping to provide a voice to the community. I’ve also taken part in observational studies such as Enroll-HD, and helped my mum to participate in Enroll-HD as her caregiver. 

When my mum was first diagnosed with HD I had to live in silence for years, so it feels empowering to be able to use my voice now. I strongly believe that being open about our stories is what creates change. I don’t have any control over my genetics, but I can do everything in my power to contribute to research and drug development by sharing my lived experience. 

Nationality: French

Ghislaine

I am retired now but used to be an English teacher in secondary and high schools. I’ve taught for 43 years.

My ex-husband had Huntington’s Disease.  My eldest son is gene positive and my youngest son thankfully tested negative. 

When my ex-husband was diagnosed with HD and I realised my sons were at-risk, I joined the French Association.  I wasn’t very active however until 2012, when my son tested positive.  Then I became an executive member of the board.  I really wanted to know everything about the disease and feel useful in some way.  In the process, I found a new family. My best friends now are in the Association. Being able to talk about HD has helped me accept it and face reality.   

Most of the departments (regions) in France have a special contact to help people affected by HD.  I’m one of those contacts for five departments. I provide all sorts of practical and emotional support, from helping people complete administrative tasks, to finding places in care homes and so much more. 

Not many people in the French Association speak English.  Because I was an English teacher, the Association relies on me for translations and international relations.  I’m getting more and more interested in research and of course I will do whatever I can to help the HD community, in France and abroad. 

Nationality: French, Swiss

Hubert

Since 2019, I have been working in a pharmaceutical company as Senior Scientist in the Neuroscience Discovery department. I obtained my Ph.D. degree at the Institute of Genetics and Molecular and Cellular Biology in 2015 (Strasbourg area, France) and was a postdoctoral research fellow at Massachusetts General Hospital (Boston, MA, USA). During both my doctoral and postdoctoral researches, I worked on HD.

I come from an HD family.

I was a board member of the Association Huntington France for a number of years.

Through my position as scientist in industry and an HD family member, I would like to contribute to bridging the HD community with regulators, industry, researchers and governing bodies.

Nationality: Swiss, Venezuelan

Jessica

Clinical Psychologist, Study Coordinator

I come from an HD family, work at the Swiss HD center as a psychologist and study coordinator and I’m also a board member of the Swiss Huntington’s Association.

I grew up and experienced first-hand this disease in Venezuela. About 12 years ago I came back to Switzerland and since then I’ve been working with the Swiss HD center, trying to create awareness and to break the taboos and stigmas associated with this disease.

Huntington is not only my passion, but also my life…. if the Huntington’s community doesn’t speak up and raise awareness, who will? The key to the cure/treatment is in us. We just need to work as ONE, as a Team.

Nationality: Egyptian, Swiss

Karam

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

Karen

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: North American

Karen

I studied to be a Medical Technician and worked in the lab for 9 years. I enjoyed being a phlebotomist
and was the one they called when someone else had problems drawing blood. After moving to Florida, I
became a driver at FedEx and stayed there for 38 years, until I retired.

When I was in high school my aunt showed symptoms of HD. She was very sick and we had no idea what
the cause was. After my mom was diagnosed, I spent a lot of time learning about HD. I went to the HDSA
website to get the Physician Guide to Huntington’s Disease so that I could teach the doctors how to take
care of my mom. In 1994, while my mom was still alive, I tested positive myself and decided to get
involved with HDSA. I went to the national convention in Rochester NY with my sister. When we
returned, we started a support group and began fund-raising for HDSA. I was Huntington’s Disease
Person of the Year in 2003 in Texas. I have been to all but one HD convention since getting my results
and have been a speaker at a few of them.

I have been fundraising, running support groups and raising awareness for 30 years
I have been to Advocacy DC to talk to congressional representatives. I am on the FDA Central Nervous
System Advisory Committee and I helped get Tetrabenazine approved.
I was in the COQ10 study for 2 and a half years. The results weren’t strong enough to demonstrate a
slowing of HD but I stayed on COQ10 and still take it now.
I was in the Predict HD study in Iowa for 11 years. I am also in Enroll-HD. I did stop another study
because of side effects.

I cannot get enough information on HD. The day I tested gene positive I set a course to make this all I do
until they cure this disease.

Nationality: South African

Lysle

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: Brazil

Luciana

I am a dentist and a scientific researcher with a PhD in Oral Diagnosis (with emphasis in Oral Imaging) and currently attending to the post-doctorate program at the University of São Paulo, in São Paulo – Brazil; my PhD program included participation at the Medicine, Dentistry and Pharmacology School at Okayama University (Japan) as an exchange agreement between these universities.
I also coordinate the scientific committee of Brazilian’s Huntington Disease Association.

My family discovered my mother had Huntington’s disease (HD) in 2015. The diagnosis process took about 5 years from the beginning of the motor symptoms, and I participated actively. My grandmother had HD but she was misdiagnosed with Parkinson’s disease. Nowadays my mother is in the last stages of HD.

When my mother was diagnosed, although I studied the disease through diverse scientific databases, I urged to find more information about HD. I was also devastated and found the support I needed at the Brazilian’s Huntington Disease Association (ABH). Later, I volunteered to help them with research language translations, and creation of texts and videos to families and patients. More recently I decided to dedicate more time to ABH and now I’m representing the association in conferences, dealing with research institutions, etc; so I was invited to coordinate the ABH scientific committee, which is my position nowadays.

As a rare disease, HD is not completely understood by many professionals. The experience of dealing with my mom and many patients provided me a fully understand about the disease, and I want to make sure clinical trials are designed considering the disease singular features and HD patients specific needs.

Nationality: North American

Lauren

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

Nationality: Indian

Megha

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.

Nationality: German

Michaela

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.

Nationality: Pakistan

Mustafa

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.

Nationality: German

Nancy

In my “first” life, I was a graduate in administrative science focusing on social and severely disabled law.

I then completed a journalistic training and I am a certified consultant for organisational development and communication as well.

In my professional life, I have been able to gain a lot of experience as a manager and networker, especially in the field of social work, health services other fields.

In recent years I have managed various institutions for the German Red Cross, including a children’s and youth hospice, nursing services and other Helping- and  Auxiliary systems. 

After a long diagnostic odyssey, I tested HD positive in 2022.

During my research on how I can shape my life well with Huntington’s disease, I came across the German Huntington’s Disease Association (DHH), where I started attending various events.

In the future, I will be involved as a spokesman for the sick.

There are different reasons for my involvement in the HD-CAP:

In the meantime, I am in early retirement and would like to spend my time with meaningful things.

It feels consistent for me to contribute my decades of experience to the Huntington’s community.

My love for art and creativity will certainly be incorporated into my activities as well as my joy of successful communication and encounters.

It would be wonderful if I could continue to formulate the perspectives of the sick and their associated and place them where they should be seen and taken into account.

I’m looking forward to a successful cooperation.

Nationality: Dutch

Rob

I am a chemist by training (MSc) and I did a PhD in pharmaceutical analysis. After a long career in academia, I switched in 2022 to a gene therapy company that is developing therapies for diseases like ALS and HD. Here, I am responsible for biomarker assay development and clinical translation.

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 and have seen all the aspects of it.

I am a board member of the Dutch HDA, the Dutch Rare Disease Council, and the EHA. Moreover, I am a member of HD-CAB and of the steering committee of Roche’s tominersen clinical trials. Besides that, I raise awareness by doing public speaking/writing about HD.

An organized community can make a huge impact in clinical trial design and execution. Groups like HD-CAB give us an opportunity to be heard, as companies and legislators are more willing to listen. And that is an important step forward in a rare-disease community!

Nationality: North American

Tanita

I have a Bachelor’s degree in Public Affairs, Associate of Science Degree, Diploma in Paralegal Studies, Author of memoir “We Exist”. I am also an HD Advocate and Motivational Speaker.

I am gene positive and symptomatic. I did not come from a family with a history of HD. I was told repeatedly that black people don’t get Huntington’s disease. It took nearly two years to get a definitive diagnosis. Despite having multiple DNA tests, I still am met with uncertainty by medical professionals, because of my race.

After facing a lot of racism within the medical community, I was motivated even more to raise awareness of people who are in marginalized communities that have HD. I am very passionate about meeting with others especially in the medical community regarding this issue. I want people to know that there are entire populations that are not being studied for HD.

I have joined the HD CAB to give back to the HD community. I would love to be an active participant in the global community. I look forward to learning as much as I can about this horrific disease.

Nationality: Swedish

Tess

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

William

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.

Nationality: Chinese

Xi

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.

Nationality: Chinese

Xinrun

I graduated from the Catholic University of Korea in 2014 with a Master’s Degree in International Politics.

Ever since graduation I have been working in the Shanghai branch of a Korean steel manufacturer called POSCO Group as Sales Manager for International Trade

My mum is an HD patient with a CAG of 43.  My elder brother is an HD carrier with a CAG of 42 and I am an HD carrier as well with a CAG of 41.

I am a volunteer for the Chinese HD association, in charge of translating English papers into Chinese.

To know more about HD and try to help as many people as I can, as much as I can.

Nationality: Russian

Zaynab

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.

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