Seth Rotberg completed a master’s degree in nonprofit management at DePaul University in Chicago. He serves on the board of the Huntington’s Disease Youth Organization (HDYO), and he offered answers to our questions about his work supporting young adults impacted by rare and chronic conditions. This is our second Q&A with Seth—the first, on genetic testing, can be found here.
What is HDYO and how are you involved?
Huntington’s Disease Youth Organization (HDYO) is an international nonprofit that provides support to young people who are impacted by Huntington’s disease (HD) worldwide. HDYO provides social, emotional, and educational support to anyone up to age 35 who is impacted by HD.
I use the word “impacted” because sometimes when you say, “affected,” people assume that means diagnosed. But when I say impacted, I actually mean a variety of people: someone who could be at-risk of inheriting HD, someone who has a parent who has it, someone that tested positive or negative, or someone who is a caregiver. Each of those individuals still needs support.
I sit on their board of trustees as part of my personal goal to focus more on supporting young people and trying to help guide them so that they don’t have to face some of the challenges I faced growing up in a family impacted by the disease.*
What does it mean to you to be a mentor to young people?
As a result of my personal HD journey, I knew I wanted to inspire others to feel empowered and be engaged to fight back through fundraising and advocacy efforts. I know I won’t have the same exact story as anyone, but if by sharing my story I’m able to change the life of one young person who might be struggling, then for me that’s a success. I’ve been able to do that over the last few years by working with young people in the HD community, particularly through HDYO.
My goal and my hope is to expand my work to young adults impacted by any rare disease or chronic condition by continuing to share my story as well as supporting them in figuring out and then locating resources they need, and tools that can help them live with a positive mindset.
I’ve realized that sometimes, when we try to help people, we forget to ask them what they’re looking for. What are their interests? What are their needs? What type of service would benefit them? That’s kind of what I’ve been working on so far. I’ve been fortunate enough to be connected to other rare disease advocates both older and younger. I’ve spoken with other young adults to find out what their needs are. I ask them what support they would appreciate whether that is an online support group, peer-to-peer mentoring, or an in-person young adult meet up.
I am slowly figuring out what’s going to help them meet those needs in coping with their disease and hopefully improving their overall quality of life.
Is this something you were working on through your master’s program?
Yes and no. My master’s program in nonprofit management was more geared toward the ins and outs of nonprofits. But it did get me to think on a higher scale and higher level about determining what services are needed or need to be improved to better support young people in society or local communities.
One idea that came from working on my capstone was: How can we better support the young adults who are impacted by a rare disease or chronic condition?
I realized this was an unmet need and it’s something that I truly value as important. Young adults are the future leaders of the rare disease community. These are the people that are going to be involved in research, advocacy, and fundraising. The only way that will happen is if we support them effectively. We need to make sure young people feel inspired to give back, and also guide them toward making a positive difference in their own community.
What support exists for that age range?
A big part of it is social support—connecting with other individuals going through the same experience. There are also many types of educational support. For example, young people impacted by HD can check out our website, hdyo.org, which has a ton of information suited for different age ranges: children, young adults, teens, parents, or professionals. The site is there to make sure people truly understand what HD is, and to guide you to resources depending on what your need is.
Using HDYO provides more up-to-date and accurate information tailored to your situation. A lot of times your first reaction to learning you are impacted by a disease is to Google: “What is Huntington’s disease?” or “What is this rare disease?” That was something I did early on and it was very intimidating. I saw large words, the causes of death, that you only have 10-20 years to live once you’re showing symptoms (of HD)—those are very scary things to see. And that can be intimidating in a particular way for a young person.
What unique challenges do you think youth connected to HD face?
Challenges I still see are gearing services more toward the young adult age range as well as providing support for them year round.
Also, in the U.S., you’ll sometimes see that in the family there’s a desire to keep HD hidden. A parent might not want to talk about it, so then a young adult might feel like they can’t talk about it. So, that’s a challenge, and so is supporting parents who have to talk to children about HD.
Really, I think those kind of communication skills are important whether it’s HD or another rare disease. Our society doesn’t always make it easy to talk about an illness. How can we work to make the conversation comfortable for both the parents and the children who end up dealing with it?
You have some ambitions to find ways to support those young people and maybe meet some of those gaps. What do you think that could look like?
I’m working on how to pitch to a larger rare disease organization that there is a true need and a gap for young adults. Then I’d like to talk about how, as a young person myself, I can work with them to help solve this challenge or at least help improve the challenge.
We need to make sure that young people don’t feel alone in the fight. Whether it’s one rare disease to another or the same rare disease. I want to help equip them with the proper resources and tools they need to meet the interests or needs they’re really looking for.
My hope is to continue to reach out to different young people in the rare disease community and learn about their needs and interests. Then eventually the goal would be to figure out and implement the next steps to providing better support for them.
Are there other things you want people to know about supporting young people in the HD community?
Ultimately, it’s important just to take life a day at a time. I know that’s a lot easier said than done. When life gets tough, reach out to those resources for support as needed. Try to stay positive by remembering you’re not alone in the fight. We’re all in this together. But without reaching out, no one’s going to realize that.
Don’t be afraid of vulnerability. Ask for help, because everyone needs it at some point. No one’s going to be happy 24/7, as amazing as that would be. At the end of the day we have to be able to take care of ourselves, and sometimes that just means reaching out for a helping hand.