HDYO's Blog - INSIDE THE YO!
The 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.
I’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 potential to really give us some plans to work on for young people in South America. It’s an area we haven’t done much in yet and they need plenty of support, so we are very excited to see what we can do.
After our training event there will be a family conference run by Ignacio from Factor-H which we are partnering on this whole event with. The conference will see lots of professionals giving talks for family members and will be a good opportunity for families to learn more about HD and what’s going on in research. After the conference we have some opportunities to visit local HD families in Colombia and spend a day with children from HD families at a Factor-H organised get together. Lots of valuable time to be spent focusing on the needs of young people in South America, and that makes me very happy. Here’s to a good trip!
Mental 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 National Association of Mental Illness (NAMI) estimates that 20% of young people and adults experience mental health issues at some point in their life. Although that number doesn’t seem huge, when you put it in the perspective of 1 in 5 people will experience mental health concerns in their life it seems a bit more common. I say all this to say that struggling with mental health issues – depression, anxiety, eating disorders, mood disorders, post-traumatic stress and many others – is quite common and something we should ALL be comfortable talking about. It is so easy to have something wrong physically and head to the doctor, but humans seem to be much more hesitant when they can’t name the issue or they know that something just “isn’t right.”
Since we can’t always put on finger on what’s wrong, it can seem easy to run to the doctor and get a pill to make us feel better. Sometimes that is needed, but often we skip over trying to identify Talking about the things that we are most afraid is probably the scariest thing one can do. Opening ourselves up and being honest about what we are thinking and feeling leads us to feel vulnerable. We are often taught that being vulnerable (many hear it as weak) is a bad thing, but opening ourselves up; being honest about what is going on and seeking someone that can help us mend whatever it is that is going on is the bravest thing we can do.
I encourage anyone reading this to reach out and ask for help if you are struggling and feeling alone. You are not alone and the more we can all face our fears and talk about mental health issues, the more common it will become and, hopefully, less terrifying. Use your voice, be brave, face what you fear because you deserve to live your best life.
I 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 multiple other qualitative surveys. Are you a participant in any HD studies? Email me if you want to participate in research, but don’t know where to start or I’d love to learn what research anyone is participating in and how your experience is going. BJ@HDYO.org
Part of my obligation of attending is to make sure I relay what I learn at these conferences back to the community so here were my quick takeaways……
Enroll HD is much more than just an observational registry. It has transformed into an international platform with multiple research studies and resources all with strategic vision to help find treatments for HD….faster!
Recruitment is continuing to be on the rise with over 17,000 participants from over 150 sites and 15 countries. The study is still looking for more participants!!!
An Enroll Lite is being rolled out soon to help participants who may be having trouble traveling into clinic because of symptom progression. The visits will either be shorter (45 minutes) or conducted over a phone call (30 minutes)
There is an add on, Young Adult Study (HD YAS) being conducted in the UK looking for young adults to participate. There is an optional spinal tap done. As of today 100% of the participants who are in HD YAS have agreed to do spinal tap….you all rock!!!
There is still an unexplained variance for symptom onset that has yet to be figured out, but the data from Enroll HD is working to figure this out. These details could help us understand how to potentially delay onset regarding food/drinks we consume to exercise to other variables.
From study coordinators, to the principal investigators, to data scientists to HD families, there is a lot to be proud of thus far, but still a lot more to do.
Quebec City is a fun little town full of European character that I would highly recommend anyone visit for a weekend. Great food and beautiful scenery!
The younger generation in HD families continues to be the focus of the future. Treatment talks continue to be progressing to find treatment options before symptoms ever start occurring. HDYO is working to find new ways for young people to provide their voice into this conversation so the people working on the treatments are working on treatments that we all want. Look for a few new research collaborations to be launched by HDYO soon!!!
Can I answer any questions about the meeting or about the strategy that HDYO plays in this puzzle to find better treatment options? Shoot me an email….BJ@HDYO.org
As 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 building knowing it was their only option as all other exits were cut off by the fire. Thankfully both survived the fall and have been in hospital having operations ever since. Both suffered major injuries and were critical for a while but are now on the road to recovery. This is the 2nd fire they have had in that apartment in 5 years, they lost their dog in the most recent fire as well as all their furniture, clothes etc. They also now have medical costs to cover. Khrysta is getting married in December. Elaine has also been battling cancer.
We would like to send our thoughts to the Boulavsky family at this difficult time and we hope Elaine and Khrysta recover well and get out of hospital soon. They all need your well wishes and support at this time. If you can donate there is a Gofundme page set up for them:
2018 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. Postcard from Palm Springs & Malta
The main message is that the whirlwind looks likely to continue but for now we need to be patient, manage our expectations and get involved in anyway you can.
If 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 during those late nights when the thoughts and fears plagued my mind, when my world seemed to be coming to an end.
The one thing I really respect Chandler for was her ability to stay professional while ALWAYS making me feel like she was my friend. Our relationship started when she filled in for our regular facilitator who had to go on maternity leave. I was instantly drawn to her because she really seemed to understand the tumultuous life of someone living with Huntington’s. She instantly made me feel like I was in good hands when I finally went to Georgetown to start the testing process she made sure to meet with me every week for coffee or lunch and made sure I was ok and talking about things and not bottling up all of my feeling and emotions. Sometimes she had to pull them out of me and I would leave feeling better. We joke about one scenario where I said CHANDLER YOU DIDNT HELP ME TODAY. She replied CHRIS I NEVER SAID I WAS THE PERFECT SOCIAL WORKER…YOU DID.
Leading up to the RESULTS appointment I knew I wanted Chandler to be the one to give me my results. I didn’t want this memory that would be burned into my head to be given to me by some stranger. I wanted to remember her sweet voice for the rest of my life as the one who told me I had Huntington’s Disease. Of course, she obliged and made the experience as pleasant as she possibly could. I’ll never forget.
Chandler continued to see me like clockwork after my results and I can’t say enough how vital her role in my life has been. I cried many tears on the phone with her at night or in the middle of the day whether we were on the phone or in person. She never wavered or made me feel like I had to suck it up. She is so firm and comforting at the same time. It’s a rare occurrence to have such a great support system, I’ve read other people’s stories about their journey through getting tested and they are heart wrenching. Not everyone has the support system that I’ve been so blessed to have. It hurts me to hear of people going through it alone. Chandler is helping so many people and at the same time and each of those people are feeling like they are her only client. I know that because I felt that way. I will forever be grateful for her and the role she plays for HDYO.
Last 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 is available in 14 languages
We’ve offered support to around 3000 young people and families globally
We’ve done 7 youth camps on 3 continents with around 500 young people attending those HDYO camps for free
We’ve done this all with 3 staff (our 3rd joined last year) and a great volunteer team. It has been truly a wonderful experience being a part of HDYO and watching it grow. Having founded HDYO it’s beautiful to see this creation do good for the community I hoped it would help. No matter what happens in the future I will always be so happy and proud when I think about HDYO and what it has achieved. Thank you to everyone who has been involved in HDYO and to everyone who has attended a camp or asked for support, we love being able to help young people impacted by HD and we are just as passionate to reach as many young people globally as possible as we were at the beginning.
The 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 to speak in front of more than 40 people about my HD journey for about 23 minutes. The highlight of the day wasn’t that I had the chance to speak, but how I was able to inspire another young person impacted by HD. I will never forget what this young person told me, which was “If you were here to at least inspire one person, you did your job.” I was speechless, but knew the positive impact I had on this one individual.
A few weeks after this I fell into a dark place that no one ever wants to get to. I didn’t feel like myself and each day I would wake up and not feel like getting out of bed. The best way to describe it was that I was in a bit of a funk. Luckily, I knew I didn’t feel like myself and immediately reached out to some close friends for support. They told me anything from reaching out for support, to getting more involved in events and activities in Chicago, to not focusing every minute of each day on HD. But, what hit me the most did not come until after the new year when I got back to Chicago and had an amazing chat with one of my friends. He simply told me that each person needs to find their purpose in life and it will not happen overnight. He said to give it time and continue to just be myself and search for that purpose and what makes me happy in life.
Well, let’s fast forward to January 20th, the day I had the opportunity to do a Ted Talk in my hometown of Natick, Massachusetts. After hours of practice and great support from the TEDxNatick team, my roommates, and a few close friends, I was able to successfully share my HD journey. I never would have thought that I would be able to speak in front of 800 people for about 13 ½ minutes. Did I mention I didn’t have any notes and had to memorize everything? It was such a great feeling to advocate for young people impacted by HD or another genetic disease.
What I learned from my Ted Talk is that I have a purpose in life along with everyone else. Sometimes it just takes longer to find it and realize this is what I have been missing these last few years. My hope is to continue to share my HD journey with others through speaking opportunities. This is just the beginning of something special…
“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at it’s final destination, full of hope.” – Maya Angelou
HD 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 compassionate and most dedicated group of individuals I have come to know. There is also a universal language to the HD community – one of love, understanding and hope.
HDYO has taken me around the world I have noticed that no matter where I go that those I meet in the HD community are amazingly strong, brave and inspiring. It doesn’t matter if there are one or ten languages being spoken in a room – most of the communication occurs with a look, the tone and passion in one’s speech and the massive amount of love shown to each individual. When you are in a room with HD community, the message is clear, we are all one global family. I hear many stories from young and old alike, but there are similar themes no matter where I am or what language the stories are being told in. What I hear, and try to help those I’m speaking with understand, is that they are not alone. HD can be quite isolating in one’s own community, but there is an amazing global community that is fighting with each other, for each other. There is nothing more powerful than that.
I’m incredibly lucky to work for an organization that helps build bridges across the globe to ensure that everyone feels connected. The young people I meet with all encourage me to continue to fight for them and alongside of them. They speak of hope, they share stories of courage and most importantly – they are brave enough to bare all of this to ensure that the world is aware of HD and the struggles each family goes through. We speak of this this often in our blog, but after our recent camp in Australia, I was reminded of just how strong and connected the HD community is.
The world may put borders, language barrier and other things in the way, but the community will always continue to find ways to connect, grow and advocate because their voice is beyond powerful. Your voice, your story is beyond powerful and never let anyone or anything try to quite you.
As 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 (3rd 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 just because they are nearby. We are absolutely here to help young people and families when things are bad but it is also a privilege to be able to share their happy times to. In a few days’ time, I head off to Australia for our second Australia/New Zealand young camp and I’m excited to meet up with our fantastic staff and volunteer team, returning and new campers. The camps and events that HDYO run are only a small part of the work that we do and each has its merit, achievements and stories. The impactful element of in person work is the connections that are made but everyone who attends. The science of connection is an evolving piece of work and shows that we need to get more connected not less. We need to spend time with people, hug more (did you know that there are scientifically proven health benefits to hugs?) and listen!!!! However, it is a changing world and we need to adapt to that change and ensure that we still make connections, even virtual ones, powerful and impactful. We need to make sure that children and young people know the difference between true reality and the reality portrayed on social media, are we equipping them with the skills, attributes and resiliency to be able to deal with the “real” world.
HDYO was founded because we needed more people to listen and hear what was happening to young people impacted by HD and its been an exciting journey that has seen us reach people in over 70 countries, help change attitudes, encourage changes in clinical practice and build new connections where previously there wasn’t seen to be a need. By working with children, young people and their parents/guardians we can help build the resiliency that they need to deal with HD and differentiate between real and fiction. Age and stage appropriate education is one element of that build process but we need to use tools like empathy, understanding, patience and nurturing to set the foundations solid.
HD is a difficult journey and one that we don’t have to take alone. The HD community is a small but powerful, understand and supportive community. We are all connected by many commonalities; HD, caregiving, surviving, testing, not testing, successes, failures, love, loss etc we all have a story. We invite people to share our journey through our stories so I encourage you all to tell the true story not the sugar coated polished story. Life is not all good times but it is in our darkest times that we can see the most light. People always learn more from one another when we get personal and true. It’s your journey make your connections count!
Get involved, be heard and listen to those who can’t speak…yet