1.What is your name?
2.Where are you from?
I am originally from Sacramento, California. I spent most of my life in San Ramon, California.
3.How did you get involved in the HD/JHD community?
Katie Jackson is a long-time friend of my family. She called me one day asking for a website for Help4HD. I knew Katie’s late husband, Mike Hinshaw. He inspired me to get involved in the Huntington’s disease community.
4.When was the first time you heard about Huntington’s Disease?
I first heard about Huntington’s disease from Katie Jackson.
5.What were your first thoughts?
I didn’t really understand the disease at first. It wasn’t until I put together Mike Hinshaw’s symptoms and what Katie was telling me that I finally understood. Mike’s mild nature and positivity changed how I thought about Huntington’s disease forever. I knew I had to advocate so that good men like him did not have to suffer from this disease any longer and that more people had empathy for those that are impacted by Huntington’s disease.
6.How did you learn about HD/JHD over the years?
Help4HD’s founder, Melissa Biliardi, and Katie Jackson offered me an opportunity to volunteer on Help4HD’s Board of Directors. This has given me a tremendous opportunity to support the community with fantastic educational programs that I literally had a front-row seat to. Running the Audio/ Visual for live events meant that I was able to learn from the world-class researchers, family-first advocates, and Huntington’s patients that make up this vibrant community.
7.How does Huntington’s Disease impact your life today?
Besides continuing to volunteer on the Board of Directors for Help4HD, Katie Jackson and I raise three at-risk children together.
8.In what way has the HD/JHD community changed your life?
Before serving the Huntington’s and Juvenile onset Huntington’s disease community, I worked for the nonprofit arm of a large hospital system here in California. When I left the hospital, I lost my outlet for helping people in my local community. The HD and JoHD community has allowed me to contribute at a much larger scale and for a worthy purpose. We are energized every day by the thoughtful and heartfelt members of this community to advocate and seek new programs to enrich the lives of people impacted by this disease.
9.What do most enjoy about the HD/JHD community?
I describe the HD and JoHD community to new entrants that maybe are not from an impacted family as the most loving and embracing group of people that I have the privilege of knowing. We all fight for the same cause, and that itself is a unifying bond that cannot be broken. Every member of the community comes from a different background, economic situation, belief system, etc., and yet we all have an exorbitant amount of empathy for one another. Any bit of help that the community receives is appreciated at a deeply personal level, and any bit of understanding or acknowledgment that we receive from outside of the community is celebrated. It is hard to find another community with that kind of love and respect.
10.What have you learned from the HD/JHD community?
I have learned so much about the incredible journeys that people in our community have endured. I learn from their stories, their struggles, and their perseverance.
11.How do you describe Huntington’s Disease to people?
My one-liner through the years has been: “A fatal, genetic, neurological disease that impacts children and adults for which there is no cure.” Nowadays, I add that I have three children at risk and describe the impossible stories our community has faced. I describe the years of misinformation about the disease and the hope for therapies that are being worked on in abundance. I also petition for support or, at the very least, empathy for the brave people impacted by this terrible disease.
12. What is your role on Help 4 HD’s Board of Directors?
I am a volunteer with a singular purpose of serving the Huntington’s and Juvenile onset Huntington’s disease community. Our mission is to educate the world about Huntington’s disease. My small contribution to Help4HD is with all things technology related. I have the privilege of supporting our corporate website, building our giveaways app for virtual events, coordinating livestreams and recordings of education events, supporting audio/ visual needs for in-person events, and I recently built an app to support our Law Enforcement Education Program (LEEP). I humbly abide by our Board of Director bylaws as well as the legal and fiscal responsibilities of our 501(c)(3) nonprofit organization.
13.Have you participated in any clinical trials with the kids?
Yes, I participate in the ChANGE HD study, led by Dr. Peg Nopolous from the University of Iowa. We participated in the satellite study at UC Davis with Dr. Sasha Duffy and her amazing team in Sacramento, California.
14.How was it being a part of an HD clinical study with the kids?
First, any child willing to be part of such an important study should be congratulated for their courage and contribution. The process laid out by ChANGE HD is world-class. The team is very personable, encouraging, and sympathetic. The tests were straightforward and scaled to the age of our youngest daughter to our older teenage daughter. We brought snacks and other items to make the experience more comfortable for the kids.
15.Did you find anything to help the kids through their grief process or even take them away from HD every once in a while, so not everything is HD in their lives? We have HD in our family, but we are not defined by HD. The kids have their own natural temperaments, goals, interests, and talents. For the girls, it was important that they observe and experience a healthy relationship with someone of an opposite gender. Macy and I have “Baby Macy and Baby Michael” day, where we do all the things that she wants to do. That usually includes picking up crafts from the local discount store and eating at her favorite chain restaurant in our area, Chili’s. We will play at the park or swim in our pool. She gets to decide what she wants to do, and I give her my undivided attention.
For Madison, we have little “dates” that we go on. It’s just a one-on-one trip to get coffee or boba tea. In the beginning, we would go on these little trips frequently so that she got to know me outside of the house or other things going on at the house.
Cooper and I would make a weekly trip to Starbucks or other places around town where we could try different drinks. We learned that we both do not like banana smoothies! We also found a common interest in working out that he has since taken to another level.
When their father passed away, Madison and I went on a few boba tea outings. Cooper, Macy, and I played soccer at a local park. We’ve found ways to spend quality time outside of HD so that we can all breathe.
16.What is the best approach you have found when the kids want to talk to you about HD and being at risk?
I’ve found that just listening to their concerns without judgment is a great first start. Being available at any time to discuss HD with the kids is also helpful. Some events or experiences trigger questions or concerns. Always making myself available to discuss HD creates a safe space. What we want to avoid is misinformation or them looking things up on their own.
17.What is the best part about joining Help 4 HD’s Board of Directors?
Having the privilege to serve the Huntington’s and Juvenile onset Huntington’s disease community at any capacity is the best part. Being a part of the Board of Directors for Help 4 HD allows me to bring my understanding of technology as a tool to help solve problems. The Board gives me an opportunity to provide value with the things I am passionate about to a community I am excited to serve.
18.What is your biggest wish for the HD/JHD community?
That this is the last generation that has to live with either of these horrible diseases.
19.How has joining an HD family changed your life?
These children have changed my life for the best! The fact that they are willing to let me into their lives is a blessing within itself. Having children at risk for HD is very sobering. The support of the community and having the best partner to navigate life with is what makes it all possible!
20.What is the hardest part about being part of the HD/JHD community?
The hardest part is the suffering and loss that our community has been forced to endure. With research, we have hope. With education, we have empathy. With our community, we are never alone!