Jessica Clark lives in the Asheville area with her husband, 4 dogs and a mini farm. She is a lifestyle photographer, avid hiker and together they run an asphalt repair business. Community, support and mental health management are important to her and her husband, and they want those resources to be available for others in similar circumstances. She joined our Family Advisory Board to offer support to other families affected by HD. Jessica would like to someday write a narrative that sheds more light on living with and managing anticipatory grief.
My name is Erika and I live in Charlotte, NC where I’m an elementary special education teacher. My husband was diagnosed with HD at 39 years old in 2011. We didn’t know it was in his family. He passed away in 2019. Our daughter Olivia was diagnosed in 2019 at almost 13 years old with JHD. Our son Joey is 21 years old and at risk. I’m doing whatever I can to fight this terrible disease.
Holly Edmondson is a social worker at the Charles George VA Medical Center in Asheville, NC. She currently works in the outpatient mental health program providing individual and group therapy for Veterans struggling with addiction. She is also a yoga teacher and is passionate about bringing the practices of mindful movement and meditation to populations who may not find traditional yoga settings accessible. She grew up during the childhood years of HD Reach and has been involved in the HD community in various ways throughout her life.
B.J. has played a role in the Huntington’s disease (HD) community since his mom’s diagnosis in 1995. He and his family hosted an annual Hoop-A-Thon fundraiser from 1995 – 2012 that helped raise over $1 million for the HD Society of America (HDSA). BJ co-founded the HD Youth Organization (www.HDYO.org) , an international non-profit with a mission to support, educate and motivate young people impacted by HD. He served as the HDYO Board Chairman for 10 years before stepping down in 2020 to focus on HD Genetics. Professionally, BJ has been working in the pharmaceutical industry for the past 10 years in various positions. He tested negative for HD in 2010, but remains committed to supporting the community and is fueled with passion to help those who are starting their HD genetic testing journey. You can learn more about BJ’s story via this YouTube video filmed in 2017 or follow his regular column on Huntington’s Disease News.
BJ has an undergraduate degree from University of St. Thomas (St. Paul, MN) and a Masters in Business Administration from Northwestern’s Kellogg School of Management. He resides in Charlotte, NC with his wife (Jamie) and two children (Harlin & Jett).
