Peter is the Clinical Science Leader for the Roche Huntington’s disease research program. He is a consultant neurologist and neuroscientist, specialising in Huntington’s disease (HD). Prior to joining Roche, Peter was an assistant professor at the University College London (UCL) Huntington’s Centre where he conducted HD research and was involved with clinical trials. He was one of the first clinicians to administer antisense oligonucleotide therapy as part of a Huntingtin-lowering clinical trial. He completed his PhD and post-doctoral training with Professor Sarah Tabrizi at UCL focusing on brain changes in the earliest stages of HD. Peter has been looking after patients with HD for nearly 10 years, and he continues to see patients and families in the clinic.

Katrina Paumier, PhD, is an accomplished Neuroscientist with 16 years’ experience in neurodegenerative research and 5 years of industry experience spanning multiple disease states including Parkinson’s, Alzheimer’s, Epilepsy, and Rare disease. She is currently a Medical Director at Sage Therapeutics leading the medical strategy for the Neuropsychiatry program with a focus on cognition. Prior to her role at Sage, Katrina held multiple roles within Medical Affairs at Mitsubishi Tanabe Pharmaceuticals, UCB, and EMD Serono. Prior to joining industry, Katrina was an Assistant Professor of Neurology and Deputy Director of the Dominantly Inherited Alzheimer’s Network at Washington University. She also served as an Assistant Professor of Translational Science and Molecular Medicine with a focus on Parkinson’s disease at Michigan State University. Katrina is passionate about clinical research and strives to make a difference in the lives of people suffering from neurodegenerative diseases.

Kelly Atkins currently works in the School of Psychological Sciences, within Monash Institute of Cognitive and Clinical Neurosciences, Monash University, Australia. Her clinical and research interests include Cognitive Psychology and Neuropsychology with a focus on ageing and neurodegenerative disease.

For the past twenty-eight years, Corey has counselled and supported a diverse range of individuals who are challenged with emotional and psychological issues. He is a registered social worker in good standing with the College of Social Workers and Social Service Workers. Corey has an exceptionally strong commitment to helping individuals and their families optimize overall function and mental health through a collaborative therapeutic journey that focuses on the individual’s inter/intrapersonal strengths and develops new skills and strategies. Corey earned a Bachelors of Social Work from Western University in 1991 and a Masters in Counselling Psychology from Western University in 2003. Since 2011, he has been certified in Eye Movement Desensitization and Reprocessing (EMDR) and in 2012 he completed his Level 1 training in Sensorimotor Psychotherapy.

Chelley Casey is the Vice President of Patient Advocacy at Wave Life Sciences. The patient advocacy team supports several disease areas to communicate the promise of Wave’s ongoing clinical programs, preclinical pipeline, and technology platform. She and her team are focused on building authentic and productive relationships with advocacy organizations and representing the patient voice within Wave to better inform corporate strategies and key decisions and nurture a patient-centric culture. Previously, Chelley spent over a decade each at Vertex building and leading teams across patient advocacy, patient engagement, and patient services and at Biogen in a variety of patient services and commercial roles. Chelley holds a BS in Biology from Elmira College, as well as a Master’s in Public Health from Boston University. When not at work, Chelley enjoys time with her husband, kids and dog traveling, cooking and being active outdoors.

Hey, I’m Emma… 31 years young, wife & 3x Labrador mumma! I’ve been caring for my Dad since his HD diagnosis in 2014 and I’m so pleased to have been asked by HDYO to take part in this year’s congress on the social media panel! Please feel free to follow @mypops_and_hd to see my Pops’ smiling face!

I earned a Ph.D. in Biochemistry from the University of Rochester School of Medicine in 2014. I was a postdoctoral fellow at Yale University from 2014 to 2017. During this time I was also a member of the board of directors of the Connecticut Hemophilia Society. In 2017 I started my career in medical affairs, and have been at uniQure since 2019.

Laura Duncanc, MS, CGC, is a clinical genetic counselor with 10 years’ experience working with people who have or are at risk for genetic conditions. Her work in HD began when she was in her training focusing her thesis on the HD testing process followed by genetic counselors across the United States and a brief comparison of this process with other adult-onset neurological conditions. She has worked for 3 years as the primary genetic counselor with the HD Center of Excellence at Vanderbilt University Medical. Outside of clinic, she works with her University’s Genetic Counseling Program as a course director and supervisor, with the laboratory reviewing genetic tests, and with interprofessional students and advocates focusing on leadership and neurodevelopmental disabilities.

I am 33 years old and I am from an HD family. My mum and I did the gene detection last year in May, and my mum CAG is 43 and my CAG is 41, my elder brother did it this year and his CAG is 42. My mum is 60 years old this year and her situation is kind of better than other patients, as she just got mental disease symptoms and is eating

Olanzapine to control it and the result is kind of good. At the same time, she is also eating Chinese traditional medicine and cured by Chinese acupuncture which can help her feel better and more healthy. And my mum has been the status of losing her self-care ability, but she still can talk and eat and wear clothes by herself. And from this month, she began to show some actions like dancing but not that serious.(only sometimes). My bother is 37 years old and he is still working everyday, so far he just has some emotional symptoms, cannot control his temperament sometimes.

And I am also working normally now and I got depressive disorder last year, and after that, I ate Sertraline for 2 weeks and then did Chinese acupuncture to cure, and now I am better and accepted this reality. Now I am a volunteer of Chinese HD community FENGXINZI, and I am in charge of translating the English papers and studies into Chinese and share these news with Chinese HD patients.

With more than three decades in the music business, renowned drummer, Trey Gray, is beating more than just drums, he is beating the odds. Gray found his passion for music at the tender age of five. In his early 20s, he relocated from South Bend to Nashville to pursue a professional career as a drummer. He played in local honky-tonks before landing an audition with Faith Hill, which became a huge turning point in his career. After seven years with Hill, he began to notice changes in his body. In 2003, Gray’s life changed forever when he was diagnosed with a genetic condition known as Huntington’s Disease (HD). The neurological disorder, characterized by the degeneration of the brain’s nerve cells, deteriorates a person’s cognitive and physical attributes, mimicking symptoms of ALS, Parkinson’s and Alzheimer’s diseases. At the time of his diagnosis 17 years ago, Gray was given 10 to 15 years to live.

However, Gray’s disorder couldn’t stop him, and he found that drumming helped contribute to his longevity. “Any type of oxygen you get into your brain is good, and moving helps,” says Gray. “With drumming I’m doing four limbs sometimes at a time; imagine that in your brain, the neurons that are firing, it’s just fantastic.” Since his diagnosis, Gray has continued playing, in the studio and on tour, with country superstars Faith Hill, Jewel, Brooks & Dunn, and Reba McEntire. In 2020, he toured with Reba and Brooks & Dunn, traveling from Las Vegas to Charlotte, Tampa to St. Louis, and beyond.
Late last year, he established The Trey Gray Foundation. In addition, he is the official celebrity spokesperson for the Sitrin NeuroCare Program, located in New Hartford, NY. The Sitrin Health Care Center is a not-for-profit organization that provides specialized programs for residents with HD and ALS, in addition to other services. Sitrin’s NeuroCare Program is the first and only one of its kind in Upstate, NY, one of only nine in the country, and was the winner of the 2019 Huntington’s Disease Society of America’s (HDSA) inaugural long-term care award. Sitrin’s 32-bed long-term care program focuses on compassionate, comprehensive care for individuals living with HD and ALS.

Gray was first introduced to Sitrin staff in 2014, and visited the unit last summer. Impressed with the facility’s picturesque setting and unique approach to care, Gray is drumming up awareness for Sitrin as he travels the country. Each day on tour, he will be rocking his blue wristband, signifying his fight against Huntington’s Disease and giving others hope in overcoming the odds. Throughout the nearly two decades since Gray’s diagnosis, his optimism has never wavered. Grateful for every day, he counts his blessings as fervently as he counts his beats. His story is one that will leave audiences amazed.
Trey is currently working on a book that tells his story and hopefully will inspire others who are dealing with HD. No title or publication date are available at this time.

I am tested positive for HD. It's in my family on my Dad's side. He passed away 2017 so I'm used to caring and I know what it's like to grow up with a family of HD. Me and my brother were early on to make awareness about HD when we learned what it's all about ourselves. I want to make great connections with HD people all over for inspiration and hopefully be able to bring something back to other people in my situation. I want all people to know what HD is.

Yousef Gamal El-Din is a Dubai-based anchor for Bloomberg. He co-anchors “Bloomberg Daybreak: Middle East”, bridging the gap between Asia and Europe’s trading days, looking at the most important business, economic and financial issues shaping global markets. Since the start of the show in 2016, Gamal El-Din has hosted high-profile figures including heads-of-state, ministers, CEOs and billionaires. The program airs weekdays at 8AM Dubai (4AM GMT / 12PM Hong Kong) on Bloomberg Television, Bloomberg Digital and Bloomberg Radio. Gamal El-Din joined Bloomberg after five years as an anchor with CNBC in London, where he hosted “Capital Connection” and “Access: Middle East.” In over a decade of live television, he has secured exclusive interviews with many celebrated international leaders in politics and business. As a regional correspondent, Gamal El-Din courageously reported from hotspots across the Arab World at defining historical moments. Earlier in his career he was an anchor for Egyptian Television. He holds two journalism degrees from the American University in Cairo, and is fluent in four languages.

I am an economist, for the last 10 years my main job is a full-time mother of 2 kids.
Your relation to HD
I am an HD family member, have seen 3 generations with HD – grandmother, father and aunt, sister
Your connection with the HD community
4 years as a volunteer in the Russian HD community, since July 2021 – Russian coordinator of the EHA project “Moving Forward”

My connection to HD goes back to my grandmother who had HD and then my mother also inherited the disease and she lost her battle to HD in December.

I want to be able to connect with more people who have a connection with HD and create a community within this group. I also want to be able to show awareness for this disease as it is not talked about enough

Sarah Tabrizi is Director of the UCL Huntington’s Disease (HD) Centre, Joint Head of Department Neurodegenerative Disease at the UCL Queen Square Institute of Neurology, a Principal Investigator at the UK Dementia Research Institute, and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery. She graduated in Biochemistry, then studied Medicine at the University of Edinburgh where she was awarded the 1992 Leslie Gold Medal for the most distinguished medical graduate. Sarah undertook her PhD and trained as an independent scientist at UCL, establishing a large basic bench science and translational research team focussed on finding disease modifying therapies for HD. She was PI on the first successful phase 1/2b trial of an antisense oligonucleotide (NEJM 2019) and currently serves on several SABs advising industry on the development of potential gene targeting and nucleic acid therapies for HD. Sarah has published over 300 peer-reviewed research papers. In 2014 she was elected as a Fellow of the UK Academy of Medical Sciences. In 2017 she received the seventh Leslie Gehry Brenner Prize for Innovation in Science awarded by the Hereditary Disease Foundation. In 2018 she received the Cotzias Award from the Spanish Society of Neurology, and in 2019 the Yahr Award at the World Congress for Neurology and the Alexander Morison Medal from the Royal College of Physicians of Edinburgh.

I’m Rebecca, I live in Sheffield in the UK. My educational background is in biology, with an undergraduate degree in Human Biology and a PhD in Biochemistry. My PhD research was on the topic of Parkinson’s disease. I started working in clinical research after completing my PhD, joining the Sheffield Children’s Hospital research team in 2017. In this role my time was split between managing a portfolio of paediatric rare genetic disease studies and working on adult HD studies. Working on paediatric studies gave me experience working with young people and their families in a research setting, something I enjoyed greatly. In terms of HD research, I first worked on the observational Enroll-HD study before moving on to coordinating the GENERATION-HD1 drug trial in 2019. Working with HD families and within the HD research community was a great experience and something I was keen to continue. I joined HDYO in April 2021 as Study Coordinator for the JOIN-HD Registry study, allowing me to continue working on HD research and combining it with working with young people. I am thrilled to be working on this project as research into JoHD has been limited by its rarity, and a global patient registry like JOIN-HD has the potential to help

Dr. Paulsen’s interests in neurodegenerative diseases began in graduate school and she initially published in Alzheimer’s and Parkinson’s disease. Her work in Huntington’s disease (HD) led to a curiosity of the basal ganglia (BG) and she has since worked with all movement disorders as well as other neuropsychiatric diseases of the BG such as Tourettes, FTLD, OCD and acquired tardive dyskinesia in schizophrenia. Dr. Paulsen’s passion for earlier detection of disease increased with the sequencing of the human genome and the detection of the autosomal dominant gene for HD. Dr. Paulsen created the first natural history study of gene-expansion carriers for HD where nearly 500 investigators collaborated to detect biological, imaging and phenotypic measures of the earliest signs/symptoms of disease in 1500 persons from 32 sites around the world (10 countries; PREDICT-HD). Dr. Paulsen continues her work to detect and track early measures of HD in HD gene carriers in the studies entitled PREVENT-HD, which continue to refine and develop methods to prepare for preventive clinical trials in HD. Most recently, Dr. Paulsen has initiated research with another rare disease, Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL) where she hopes to develop research teams to better understand the most heritable form of vascular dementia and how vascular mechanisms impact all of the dementias. Dr. Paulsen’s collaborative team science encompasses a broad range of neuroscientific arenas including imaging, phenotyping, biomarker discovery and development (proteomics, metabolomics, transcriptomics, etc) as well as empowered patient/participant efforts to address discrimination and stigma in genetic brain disorders. Finally, she is passionate about teaching, training, and mentorship to expand the field of scientist practitioners who can more readily move discoveries to the families and advancing translational neuroscience.

Emmy-award winning TV journalist, Charles Sabine OBE, worked for the us network NBC news for 26 years.

That career took him; via twelve wars, six revolutions, and four earthquakes; to most of the news events of Europe, the Middle East, Africa and Asia since the early 1980s. There, he learnt first-hand the extraordinary limits that the human spirit is capable of reaching, in the face of tragedy inflicted by both nature and mankind.

In 2008, he decided to put the lessons of those experiences to a different use, when he became a pioneering spokesman for freedom of scientific research, and sufferers of degenerative brain illnesses - in particular, Huntington’s disease, which has ravaged his family.

That role has led to Sabine speaking at prestigious venues across the world, among them; the European and British parliaments; the Royal Institution in London, the World Congress on Freedom of Scientific Research and the Vatican.

In her 2022 New Year Honours list, the Queen awarded the Most Excellent Order of the British Empire (OBE) to Sabine, "Philanthropist and Global Campaigner, Huntington’s Disease for Charitable and Voluntary Services". The first time in history of such awards, that the words 'Huntington's disease' have been used in a citation for an OBE.

Bachelor of Philosophy with a major in Spanish, in 2022 I’ll be a Fine Arts student here in Colombia.
Your relation to HD
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.
Your connection with the HD community
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.

Education
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.
Your relation to HD
My mother fought Huntington’s Disease for 20 years. Unfortunately she passed away last year on October 3rd, 2020. May she rest in peace.
Your connection with the HD community
I’m currently a member of the board of HD-CAB and admin of the Huntington’s Arabia Facebook Page

Erin Paterson is the founder of Lemonade Press. She is on a mission to positively impact other people’s lives by writing and speaking about genetic disease, depression, and infertility. She shows that it is possible to live a meaningful life even when faced with unexpected obstacles.

She empowers patient communities by helping people write and share their own medical journey’s in specialized medical anthologies.

Erin tested gene positive for Huntington’s Disease (HD) in 2006. Shortly after she started suffering from depression, then received more crushing news, she was infertile. Despite those diagnoses she was determined to have a family and live a joyful life.

She is a proud mom who loves to run and bike in her spare time. She has completed 16 half marathons and 1 full marathon.

She is the author of All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness. Find out more at www.ErinPaterson.com

Dr. Hayden is an accomplished scientist and physician. He is a Killam Professor at the University of British Columbia and Senior Scientist at the Centre for Molecular Medicine and Therapeutics. Dr. Hayden is also a Canadian Research Chair in Human Genetics and Molecular Medicine.Dr. Hayden was the President of Global R&D and Chief Scientific Officer at Teva from 2012-2017. During this time approximately 35 new products were approved in major markets with many for diseases of the CNS and led the approval of Austedo for chorea in HD, the second drug ever to be approved for HD in the USA.

Dr. Hayden was named one of the 50 Canadians born in the 20th century who have changed the world. Dr. Hayden is the co-founder of five biotechnology companies including: Prilenia, NeuroVir Therapeutics Inc., Xenon Pharmaceuticals Inc., Aspreva Pharmaceuticals Corp and 89Bio. He currently sits on different public and private boards of biotechnologies companies.

Author of approximately 900 peer-reviewed publications, Dr. Hayden has focused his research primarily on Huntington Disease, translational medicine, including genetics, lipoprotein disorders, predictive, personalized medicine and drug development. Dr. Hayden also identified the first mutations underlying Lipoprotein Lipase Deficiency and developed gene therapy approaches resulting in the first approved gene therapy product (Glybera) in the world.

Dr. Hayden is the recipient of numerous prestigious honors. Most recently, Dr. Hayden was awarded the David Dubinsky Humanitarian Award from the American Friends of Soroka Medical Center. He was inducted into the Canadian Medical Hall of Fame in 2017. He was named one of PharmaVoice’s “100 of the Most Inspiring People” (2015); awarded an Honorary Doctorate of Science by the Universities of Gottingen (2014) and Alberta (2009); the Luminary award by the Personalized Medicine World Conference (2014); the Diamond Jubilee Medal (2012) on behalf of HRH Queen Elizabeth II, the Killam Prize by the Canada Council of the Arts (2011), and the Canada Gairdner Wightman award (2011). Dr. Hayden has been awarded the Order of Canada (2011) and the Order of British Columbia (2010). He was named Canada’s Health Researcher of the Year by CIHR (NIH of Canada) in 2008 and received the Prix Galien in 2007. Dr. Hayden is committed to empowering others. In addition to mentoring over 100 graduate students and postdocs, he is also a TED mentor.

Education
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.
Your relation to HD
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.
Your connection with the HD community
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).

Leora Fox is the Assistant Director of Research and Patient Engagement at HDSA and has been working there since August 2017. She obtained her PhD in 2016 in Neurobiology and Behavior at Columbia University, where she studied Huntington’s disease mouse models. Dr. Fox supports HDSA’s efforts towards funding Huntington’s disease research, communicating HD research news, and amplifying family voices in the process of HD drug development. She also serves as a contributing author and editor at HDBuzz.

MEng Software Engineering – Research Assistant and Software engineer

Your relation to HD
Dad is HD positive, untested myself.

Your connection with the HD community
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.

My HD story started before I was even born with my grandmother who died from HD. I grew up with my uncle and aunt both affected by HD and in wheelchairs. In my early teens I learned that my dad had the HD gene. In the years to follow I was aware of the subtle changes and in his behaviour and eventually his movements and cognition. There are currently over 30 people at risk in my extended family… a constant motivator for the work that I do.

I was always interested in science and was naturally drawn to the brain and neurodegenerative disease. Whilst completing my Bachelor’s degree in Biology at Imperial College London, I was inspired by Dr Jeff Carroll to pursue a research career in HD. I graduated my undergrad in June 2014, tested negative for HD in July 2014 and started a masters in Translational Neurology at UCL Institute of Neurology, September 2014 – with the sole purpose of getting a project working in Prof Sarah Tabrizi’s research group (Our HD research Kahleesi!). During my masters, I serendipitously met Dr Ed Wild at a time when he needed a research assistant and I needed a job. I haven’t looked back since.

I am now a HDSA Berman-Topper Postdoctoral fellow and feel so privileged that my research work on biofluid biomarkers might help with the development of drugs for HD. I am so excited to be a member of the HDYO board and co-chair the Research Committee with Dr Bonnie. It is a privilege to be a part of the efforts to support, educate, and empower the next generation of people affected by HD.

My educational background is as teacher in special education. I also have further university studies in psychology, communication, innovation and management. I worked for many years as a teacher for children with disabilities and learning difficulties. Later on, I started as head of department for public services offering counselling and support to schools and kindergartens in relation to special educational issues. I ended my carrier within the educational system in 2016 when I took over as President and CEO of the European Huntington Association (EHA) and started to work full time here.

Relation to HD
I grew up in an HD family as my mother had HD and developed symptoms during my late childhood and adolescence. My brother passed away with HD only 46 years old in 2015. My oldest sister is in a care home and dependent on help 24/7. She is now 64 years old and, in many ways, follow the same HD-path as our mother did over 20 years ago.

Relation to the HD community:
When my mother was diagnosed in the early 1980’ties we immediately got in touch with the Norwegian HD association (LHS). To me it was a lifechanging experience to meet other family members affected by HD. I have been part of the HD community ever since the first day we met with Sigrun Rosenlund, who was the chair of LHS at the time.

I was chair for LHS from 2004 to 2014 and during this time I learned the importance of international collaboration. In 2010 I was elected to the board of EHA. Before I took over as President of EHA in 2016, all my engagement in the associations was as volunteer. EHA has had great leaders in the past and is based on core values as solidarity, inclusion and collaboration. This is a tradition and path we want to continue and that is one of the main reasons we have been active in establishing the HD-CAB partnership.

I have over 30 years of experience as a clinical therapist and have worked with people who have HD and their families since 1999. Currently I am the Director of the Carilion Clinic HD Program in Roanoke, VA. I am also an Assistant Professor at Virginia Tech Carilion School of Medicine in the Department of Basic Science Education. In addition, I am the Special Programs Director for HD Reach in Raleigh, NC. I am the president and owner of HTA Consulting, PLLC where I provide tele-therapy to people at-risk for HD, people affected by HD, and to families. I also conduct behavioral research.

I provide educational lectures on various topics related to HD to healthcare professionals and to the public throughout the USA and internationally. I have been involved in HD research, conducting both observational and clinical trials. I am a member of the Huntington’s Study Group (HSG) and the European HD Network (EHDN).

In 2003, I began to lecture on the topic of talking to kids about HD and in 2005 wrote a book called, “Talking to Kids About Huntington’s Disease: a book for people who know children with HD in their family”. The book was revised in 2017 and it has been translated into multiple languages. You can purchase a copy through Amazon Kindle via this link.

I have attended the North America HDYO camps as a staff member since 2015 and I am honored and thrilled to serve as a member of the HDYO Board of Directors, Chair of Research.

My passion to support the HD community is matched by the enthusiasm of the staff and volunteers at HDYO. I believe that HDYO is an excellent resource for kids, teens and young adults to obtain education, support, motivation and friendship. HDYO is a place where you never need to explain what HD is and there is always someone who will listen and support you. All you need to do is reach out. We are here for you!

Angela has a corporate background in accounting & banking. She is passionate about supporting the Huntington’s Community and volunteers for HDYO, HD-CAB, and Huntington’s Queensland in Australia. Her grandfather became symptomatic when she was a young girl, and later Angela cared for & supported her mother. Angela tested positive for Huntington’s Disease in 2017 when she was 20 years old. Now, she is currently undergoing PGT IVF treatment with her husband in the hope to have a HD-free baby. They enjoy spending time at the beach with their labrador Sadie as well as watching marvel movies/tv-shows

“Huntington’s Disguise”
As HD progresses, it often places a mask on the person you love. They’re the same person, but it’s difficult to see them beyond the disguise. Understanding some of the more subtle physical and cognitive aspects of HD can help you see through this “Huntington’s Disguise.” Your loved one may not be bored, disinterested, angry or unwilling, although they may appear that way to some. Underneath they are the very same person you have known, loved and cared for through the years.

My name is Mackenzie Remillard, I am from Niverville Manitoba Canada. I’ve been involved with the HD community practically since the day I was born. I grew up watching my aunt progress in the late stages of Huntington’s disease before she passed. When I was around 10 years old my parents told me my mother had Huntington’s disease.

In 2014 I attended my first young people affected by HD (YPAHD) event and national conference in Winnipeg Manitoba. From that day on my involvement with the huntington’s community began to grow as I got older.

I’ve attended multiple YPAHD days, national conferences and one HDYO North American camp. I am currently a member of Manitoba chapter for Huntginton’s and a member of the YPAHD executive team. I am also a trained mentor as a part of the Huntington’s society of Canada’s mentorship program.

When I turned 18 I made the decision to get genetic testing done. 1 week after my high school graduation I met with a genetic councillor and found out I tested negative for the HD gene. this sounds like it should be good news but it has brought on lots of different emotions from no longer feeling apart of the HD community, survivors guilt and even fear of not knowing my future.

Arik Johnson, PsyD is the Chief Mission Officer at the Huntington’s Disease Society of America. He is a licensed clinical psychologist who previously worked with people and families affected by Huntington’s disease at the HDSA Center of Excellence at UCLA. In addition, he provided services in the UCLA Movement Disorder Program to people living with Parkinson’s disease, atypical Parkinsonian disorders, and other movement conditions. Dr. Johnson earned his masters and doctor of psychology degrees at the California School of Professional Psychology at Alliant International University and received his bachelors of science at the University of Minnesota.

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.

Your connection with the HD community
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.