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Pexels 298246 flowersAngela's storyEveryone Hi everyone, I’m Angela. I’ve created this video as part of Huntington’s disease awareness month. Huntington’s disease is a brain disorder caused by a defective gene in the DNA instructions called huntingtin which causes nerve cells in the brain to break down over time and deteriorates a person’s physical, mental, and emotional abilities. All children born from a parent with HD has a fixed 50% chance of it being inherited. Most people begin developing symptoms between the ages of 30 to 50, but it can also occur for children, known as Juvenile Huntingtons Disease. Huntington’s disease is...Find out more...
Pexels 5019407 brazil alagoasTatiana's StoryEveryoneClick the language selector in top right to read this story in Portuguese. Tatiana Henrique 27 years old Psychologist Family member at risk for HDBrazil, May 2021At age five, I had no idea why uncle Chico behaved that way. I remember visiting your home in the interior of Alagoas (state of Brazil) and some images fill my memory. I remember that in his house there was a bay-like door, and immediately saw a wall full of pictures of saints. Leaning against this wall full of images, he was the most attention-grabbing figure. Sitting in the wheelchair and too thin, his fingers and legs were...Find out more...
2021 05 18 anon pictureAnonymous storyEveryoneMy husband and I met at a young age, we were still at school. His Dad was symptomatic with Huntington’s Disease. I didn’t know much about it, but his speech was odd, his face looked different and his walking was unsteady. It was uncomfortable to see him, because I didn’t really know how to be around him. As my (now) husband and I grew closer, I learned that HD is genetically inherited and that this teenager I was falling for was at risk. It didn’t really bother me, so the relationship developed, We married and had children.I was so conscious about the HD risk to our children and prior to...Find out more...
Pexels cornwall 5615333Emma's storyEveryoneMy journey with Huntington’s Disease began at a very young age (albeit there was no actual diagnosis at this time). My Grandad was known in the family as ‘the one who jigged & couldn’t sit still’ we had no idea he was suffering from HD, the doctors originally thought he had late-onset Parkinson’s but he was diagnosed with HD in 2010 & later passed in 2012. At this stage I was only in my late teens and didn’t really understand the seriousness of the condition, it was then in 2014 that my Dad’s colleagues had noticed his behaviour change at work, and they asked him to be tested for HD.....Find out more...
Pexels toronto 1292843Erin's storyEveryoneMy husband and I were just getting home from a run with our friends. As we were walking through the front door my phone started ringing. I kicked off my shoes in a hurry and they landed haphazardly on the floor. My gym bag was still hanging from my shoulder as I answered the phone. "Hi Mom" I said unaware that the course of my life was about to change. Most evenings my husband and I wouldn't get home until after 9pm. We were heavily involved in sports, playing on two baseball teams, a volleyball team, working out at the gym and training for half marathons. All of this after a long day at...Find out more...
Pexels sweden 421759Anne's storyEveryoneHello! My name is Anne. I am 24 years old and currently shifting between living in Colombia and Sweden. When I was born, my uncle had Huntington's disease, and later on, my dad as well. My dad passed away during the beginning of the pandemic in 2020, and I miss him a lot. I am now the only person at risk in my family and somehow related to Huntington's disease, and what I have always been doing is to learn more about the disease from different perspectives and telling my story from a more positive perspective. Hej! Mitt namn är Anne. Jag är 24 år gammal och skiftar med att bo i Colombia och...Find out more...
Pexels 54512 griefGetting through the holidays while grievingEveryoneFirst, let’s talk about grief. Grief is a complicated emotion that can occur after you lose someone, but also with any major life changes. When we talk about HD, there are many instances when grief may occur:When losing a loved one Your own diagnosis or family members Changes in the home (parent unable to do tasks, changes in activities due to illness) Moving a loved one to a care home Changes in traditions due to changes in family The holidays often bring up a lot of complicated feelings or exacerbates feelings we are already having. Know that you are a not alone, change is hard and,...Find out more...
Pexels 722708 conferenceEHDN ConferenceEveryoneNot only did I have the opportunity to attend my first ever EHDN Conference, but I also spoke in two different sessions; Everyday Life as an HD Gene Carrier and Debate Session about Confidentiality in Huntington’s Disease. I didn’t really know what to expect since I heard it happens every two years in Europe and is one of the largest HD gatherings in the world. It was definitely different compared to the HD conferences I have been to in the past, but I definitely learned a lot both as a speaker and an attendee. Here is what I learned:Young people from all over Europe and Asia do not have...Find out more...
Pexels 2539417 peruBrayan’s Story – PeruEveryoneMy name is Brayan Guzmán, I’m 26 years old and this is my story, I’m from Peru and I came from an HD family, the first person to had HD was my paternal grandmother, which she had 10 children’s; at the moment 3 of them already have HD, of which 2 of them already died, my uncle and my dad. At the beginning as any kid, I ignored what was happening, my dad started to having symptoms when he was around his 50, back then my dad earned his living by been a waiter, from the ignorance of the people we suffer rejection and offensive comments such as “your father is drunk, and he can’t work”....Find out more...
Pexels 34601 notebookFind Your HD PlatformEveryoneThe main reason that agreed to help Matt start HDYO, was because I lived through everything that young people go through while in a family impacted by HD. I watched my Mom slowly progress which resulted in a somewhat dysfunctional family situation. I endured the struggles telling friends and a community about the difficulties of HD. I experienced the emotional rollercoaster of my sister and I both being at-risk. I’ve had to say goodbye to my Mom and many other HD family friends that we have met along the way. These times weren’t easy, but there were a few happenstance occurrences that I was...Find out more...
Sa tshirtsLooking ahead to South American training event!EveryoneI’m pretty excited about our next trip, which will be to Colombia from July 3rd-11th. We have put together a training event for almost 30 young people from across South America to attend. The event, on the 5th and 6th, will focus on looking at the support currently available to young people impacted by HD in each country in South America and then we will develop plans as a group to improve support for young people. It is our first major move in South America, I attended a world congress in Brazil some years ago and visited some local families in Feira Grande, Brazil, but this event has the...Find out more...
Pexels 4226264 brainThe Taboo of Mental IllnessEveryoneMental health is always a hard topic to tackle, not just with young people, but with humans in general. So often we are taught that we need to “toughen up” and that we should pretend that nothing is wrong even when we are struggling the most. Historically, we sent people with severe mental disorders away and shunned the rest of mainstream society. Decades of this behavior gave mental health a stigma and almost legitimized the claim that it was something that one could control and just “snap out of.”Although things have changed quite a bit, mental health can be a hard thing to discuss. The...Find out more...
Pexels 722708 conferenceEnroll-HD Congress 2018EveryoneI had the honor to attend ENROLL HD’s Inaugural International meeting earlier this week to represent HDYO and all the young people in families impacted by HD. I was joined by my colleague/friend, Cat Martin, HDYO’s Executive Director. The conference took place Sunday May 20 through Tuesday May 22 in Quebec City Canada. I was astounded to see over 500 leaders in research attend from around the world to come and collaborate!I am a current participant of Enroll HD (4-5 years) and have been involved in almost any other study that will take me over the years; COHORT, PREDICT, Exercise HD and...Find out more...
Pexels 3808904 typewriterA family in needEveryoneAs it’s my turn for a blog post I wanted to dedicate this post to a family in need of your support and well wishes at this time. Last week, the Boulavsky family in the US had a very traumatic experience. We know the family as their 3 sisters have all been to our North American camp with the eldest, Erika, having been a volunteer for us at camp for the past two years. Unfortunately, last week their mother, Elaine, and youngest sister, Khrysta, were trapped in their apartment on the 3rd floor by a fire spreading throughout the building. They both bravely jumped from the 3rd floor of the...Find out more...
Pexels 5726804 microscopeCHDI Therapeutics Conference UpdateEveryone2018 started with a whirlwind of hope after the December announcement from Ionis that their trial of the Huntingtin Lowering drug Ionis-HTTRx was safe and well tolerated. In Feb 2018 our Chairperson BJ Viau represented HDYO at the CHDI Palm Springs Therapeutics conference where the data from the trial was being presented by Prof Sarah Tabrizi.Here is the video from the conferences with all the information about the latest research and opportunities, including an interview with BJ and a very brief appearance by Cat. The main message is that the whirlwind looks likely to continue but for now...Find out more...
Chandler chrisMe & My Youth WorkerEveryoneIf someone had told me three years ago that I would have moved to DC and gotten tested for Huntington’s Disease I would have told them they were out of their mind. Even more so, if they would have told me that I would find a one of a kind social worker who would literally hold my hand through the most stressful experience of my life I would say HA HA YEA RIGHT. Well needless to say that’s exactly what happened. I moved to DC and got tested for Huntington’s and I didn’t do it alone. I had Chandler Swope to help me during it all and I can’t imagine what it would have been like to not have her...Find out more...
Pexels 225025 ballons6 Years of HDYOEveryoneLast week we passed HDYO’s 6-year milestone. It really has been a wonderful journey for myself personally but more importantly for HDYO. When we started HDYO we really just wanted someone to benefit from our website which we’d put a lot of time and effort into making educational and accessible for young people. Little did we know that the response to HDYO would be hugely positive and we’ve achieved some wonderful goals which weren’t even on our radar when we started. Here are some things we’ve achieved in that time:Around 3 million people have visited HDYO’s website in 6 years Our website...Find out more...
Pexels 34601 notebookFind Your PurposeEveryoneThe end of 2017 was such a whirlwind for me. I went from sharing my HD story at the Northwestern Symposium in Chicago, to feeling lost and mentally drained, to searching for my purpose in life. Each part has had a significant impact on my life and where I am today, and I have to constantly remind myself to focus on the present and forget about my past.The Northwestern Symposium was an amazing experience because I had the opportunity to share my HD story and the impact HD has had on my life. With the help from one of my roommates (who I continue to hint at writing a book on me), I was able...Find out more...
Pexels 3808904 typewriterHD has no bordersEveryone“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at it’s final destination, full of hope.” – Maya AngelouHD doesn’t have many positives, but I have been lucky enough to travel to many places while working with HDYO and I know many young people and individuals who have been afforded the same opportunity. I have met so many amazing people and seen some of the most beautiful places I’ve ever come to know thanks to these opportunities. I’ve also learned so much – I’ve come to know that HD has no borders. The HD community is the strongest, most...Find out more...
Pexels 34601 notebookConnections and JourneysEveryoneAs we come to the end of the holiday season I have been thinking a lot about the people who I have encountered throughout the last year. This in turn got me thinking about how many people we come into contact with as we journey through our lives.On Wednesday (3 Jan) two of the incredible young people who attended our first Australia/New Zealand youth camp in Queensland last January met with me again here in Scotland with their lovely parents. We had lunch and chatted about everything and nothing. I can’t tell how much it means when families that we have worked with reach out to say hello...Find out more...
Pexels hello wavingBe who you needed when you were youngerEveryoneIn this #SeasonOfSmiles I thought I would tell you a little bit of my story and why I am being who I needed when I was younger. Huntington’s Disease (HD) is a rare neurological disease. So rare in fact, that when I first found out that I was at risk of inheriting HD five years ago, I had only ever heard of it on an episode of Private Practice.My grandmother passed away from Huntington’s Disease in February of 2012. At the time, I was already a mother to my fourteen month old daughter, Sophie. It was devastating to lose my grandma and at the same time learn that I was at risk of inheriting a...Find out more...
Pexels 34601 notebookEmpathy, Vulnerability and AuthenticityEveryoneI was really struggling to figure out what I wanted to write about this time. I had a few ideas, but whenever I went to write I couldn’t get the words to make sense. I then read a quote in an article and it all became clear. The quote was “My Life is Mine.” This quote helped me put some of my thoughts into perspective. For me, this quote has a lot of meaning, but three themes really stood out:There is power in speaking things into existence. This doesn’t make things easy, but it gives someone a sense of ownership and control over things that makes them a force to be reckoned with should...Find out more...
Challenge week cardImagining the Impossible, Achieving because I’m PossibleEveryoneOne of my favourite quotes is from is from Audrey Hepburn:“Nothing is impossible, the word itself says I’m possible”This changed my mindset from one of can’t to can. A simple change that opens up a whole new world of possibilities.In 2007 a colleague and I who worked for Scottish Huntington’s Association spoke at HD World Congress about the importance of supporting and educating young people about HD in an age and stage appropriate way. To say that there was resistance from the whole community is a bit of an understatement, the majority believed it was wrong and impossible. Ten years on the...Find out more...
Pexels 34601 notebookChallenge Yourself!EveryoneWith HDYO’s Challenge Week starting this Sunday, I had to take the opportunity for my first blog post for, INSIDE THE YO, to discuss the opportunity that everyone has in the HD community to challenge ourselves to do good by helping others. HDYO Challenge Week is meant to challenge anyone to choose something they have been wanting to accomplish for a while and make it happen between October 22-28! Check out HDYO’s Facebook page for more info on Challenge Week.As a reminder, INSIDE THE YO blog, is meant to be a bi-weekly post from HDYO’s working team to give you an inside look at who we are...Find out more...
Pexels 277559 doorThe serious truth behind young people in HD familiesEveryoneI was watching a video last week of a speech I made back in 2012 at Stockholm Euro HD Network convention. I assure you all that I don’t watch my own talks as a hobby, this one just happened to show up on social media so I watched part of it and it got me thinking. At the time of the speech HDYO had recently launched and this was our first big HD convention in which we were able to get up on stage and talk about HDYO and our goals moving forwards. In order to talk about HDYO I needed to talk about the reason why it was needed – the huge lack of support for young people in HD families. I...Find out more...
Pexels 3808904 typewriterA Hope in the UnseenEveryoneI’m a firm believer that there is a power to positive thinking and planning. I think we can all agree that life is hard and a good majority of it is out of our control. The one thing we can control is how we take on challenges as they come. You can focus on the negative side of something, or try to find some glimmer of something positive in a situation. I try to always do the later- even when it seems impossible. Finding something good in the worst of moments helps me continue to seek more positivity and helps me recover from life’s blows just a little bit faster.I know…I know. That is much...Find out more...
Pexels 298246 flowersSummer Full of HDYOEveryoneHi Everyone! For those of you who do not know me, my name is Seth Rotberg and I currently sit on the Board of Trustees for HDYO. Just like many of you, I also come from an HD family and my mom was the first person in our family to have the disease. I am originally from outside of Boston, MA (Best sports in the country!), but moved to Chicago last August for graduate school. I could talk all day about my personal HD experience, but I am going to switch gears into my busy summer! Can you believe summer is just about over?! This has been one of my busiest and most traveled summers of my...Find out more...
Pexels 225025 ballonsAge is just a number!EveryoneI have very recently turned 39 and with a milestone birthday looming I have spent some time contemplating what I have achieved, what I still want to do and officially growing up. I am lucky to be someone who has always enjoyed their job, even thought I never consciously decided what I wanted to be when I grew up. Instead, I tried different jobs, that when looked at individually don’t really have a connection; Gym Receptionist, Mortgage Advisor, Youth Worker, Project Manager, Outdoor Instructor, Executive Director. Actually, people are the common link. All of these jobs have been about...Find out more...
Pexels 34601 notebookWelcome to the HDYO BlogEveryoneThe HDYO blog will be written by our staff, volunteers and a few special guests and posted every second Friday. INSIDE THE YO, will help our supporters get to know us a bit more and understand why we do what we do. We are always interested to hear your feedback and what you would like us to talk about.Find out more...