With 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 and how we think. We hope you enjoy reading and take something away from each post to help you understand why we do what we do.
A quick background blurb about myself…..I am a co-founder and current volunteer chairman for the Huntington’s Disease Youth Organization (HDYO.org). I grew up in a family that was impacted by HD as my Mom passed away from HD in 2011 after a courageous 15 year battle. She taught me to do everything I can to not let HD win the battle so I have dabbled in everything I can from holding hoopathon fundraisers for 15 years, to helping create HDYO, to working with pharmaceutical companies that have medications for HD, to participating in research studies, to speaking around the world to inspire others. I have been blessed to not carry the hereditary gene mutation for Huntington’s Disease, but my fight against HD is stronger than ever as some of my best friends will one day start having symptoms of HD and I can’t let that happen.
One of the toughest parts of getting involved in the fight against Huntington’s Disease (or any disease/disorder that impacts your life) is taking the first step and finding what truly makes you tick. For some that might be fundraising, or raising awareness by doing public talks or attending conferences, or doing advocacy work with your government, or volunteering with your local non-profit, or participating in clinical/observational trials at your local research center. What I have also learned is that over time, some of your interests may change and you have to find a new activity that matches your current interests.
An example for myself was that between the ages of 10-23, all I wanted to do was raise money for HD through my family’s hoopathon events. Between going door-to-door or contacting corporate sponsors or asking family/friends, I loved raising every single dollar! But then something changed and I got burnt out fundraising and started to dread asking people for money. This led myself to stop fundraising, but to find new ways to use my skills and interests to make an impact from a different angle. It was perfect timing as at that time, Matt Ellison had just thrown out the idea of creating HDYO so I jumped at the opportunity to join him and have been having fun giving back ever since.
While at HDYO, I have paid a lot of attention to how and why young people get involved. Our goal at HDYO is to support and educate young people while growing up in HD families, in hopes that we can motivate them to give back as giving back is one of the most rewarding feelings in the world. While I loved fundraising while growing up, I also know very well that fundraising is NOT for everyone. In fact, I usually discourage young people who want to initially get involved to start fundraising. One activity I have found more and more young people to enjoy is the opportunity to participate in observational/clinical research. There are more and more research studies in the HD space today than ever before and lots of easy ways to participate. I have had the chance to participate myself, from observational trials like EnrolHD, to Predict HD, to other smaller studies studying health and wellness. Most people are a little scared of the thought of being a “research participant” , but I assure you, it’s much different than you’d ever think. To de-bunk the thought of “research”, I helped create a couple videos that walked through a research study that you can find here:
What is Predict HD?
Collection of CSF:
Research is so incredibly important and joining at a “young” age is a great way to accomplish a handful of things.
- Make a difference that will potentially lead to new treatments for HD (or any disease)
- Opportunity to meet with and ask lots of questions with healthcare professionals that specialize in HD (or the disease/disorder that you are there for).
- Research usually doesn’t take up much of your time and most studies even compensate you with a little cash that you can use to buy yourself a special something!
At this past June’s HDSA National Convention, I attended a breakout session on participating in research studies and there was a young women who spoke about her experience. She was what I call a super advocate as she had been a past president for her local chapters, a fundraiser, an advocacy tycoon and much more. She really caught my attention when she said that in her current life situation she didn’t have the time to dedicate to all the things she had done in the past, but she still wanted to stay involved so she looked to research participation. She talked about how she thought she would miss the fulfillment she got from all of her fundraising and advocacy, but she was surprised by the incredible satisfaction she got after she walked out of each research trip. She felt she was truly making a difference in the fight for the future of the HD Community by speeding up the process to bring new treatments to market. She also personally felt satisfied by the ability to speak with her HD healthcare professionals to stay informed and up to date on treatments and other upcoming opportunities.
This really made a difference for me as sometimes it feels that encouraging young people to participate in research is crossing some boundary line, but I think many of us forget all of the good feelings and positivity that research participation can bring to young people (or any age).
Are you looking to challenge yourself for HDYO Challenge week? Consider challenging yourself to sign up for a research opportunity! Below are a couple links to check out if you are interested or just shoot me an email and I can connect you to a research site near you! BJ@HDYO.org
Check out HDYO’s research page:
HDSA’s Trial Finder:
Research is just one option. Find what fits with your lifestyle and interests and challenge yourself to fight back against HD or the cause that’s close to you!
HDYO Board Chairman