a Weekend of Connection and Affirmation

a recent weekend in north Carolina, hosted by hd Reach, proved to be an inspiring gathering centered around huntington’s disease (hd). the annual Education Day, themed hd Has Color, brought together families, caregivers, medical professionals, and advocates to share stories and build community.

the event underscored the belief that huntington’s disease is not merely a neurological condition but a lived experience that spans cultures,identities,and vibrant human stories. the weekend was designed to celebrate these stories and foster a sense of shared humanity.

fireside Chat: Sharing Truth Through Words

the weekend commenced with an intimate fireside chat in a cozy park, creating a relaxed atmosphere for connection. authors erin paterson, emma wajswasser, and christy dearien joined in a discussion about their motivations for writing and advocating within the hd community.

the conversation revolved around personal and thought-provoking questions,such as,what inspired you to write this book? and why did you choose to focus on huntington’s disease? the audience,deeply engaged,responded with nods of understanding,tears,and mutual support.

the authors shared their writing processes, challenges, and triumphs, creating a sacred circle of vulnerability and power. the evening concluded with a feeling of gratitude, surrounded by nature and a supportive community.

education Day: A Keynote and a Standing Ovation

education Day featured a keynote speech that resonated deeply with attendees.the speech, which detailed a personal journey marked by misdiagnosis, racial bias, resilience, and a commitment to living fully, culminated in a standing ovation.

manny attendees expressed their gratitude for the speaker’s honesty and outlook, particularly as a woman of color. the positive feedback highlighted the importance of diverse voices within the hd community.

living Well with Intention

a session co-hosted with myriam sollman, titled living well with Intention, explored the critical role of self-care. the discussion emphasized that self-care is not selfish but necessary, especially when managing a chronic illness. intention-setting, daily rituals, and small acts of wellness were presented as tools to shift mindset and improve quality of life.

panels and Discussions: Addressing Key Issues

the day included various panels and discussions addressing critical issues within the hd community. topics ranged from talking to children about the disease to navigating cognitive changes,building caregiver support networks,and understanding the implications of gene-positive or gene-negative status.

a Taste of Carolina: Comfort and Community

lunch featured carolina barbecue, described as chef’s kiss delicious! the meal served as a reminder of how comfort food can be soul-soothing, especially when shared in good company.

bloopy the Alien: Empathy and Understanding for All Ages

one of the day’s highlights was the premiere of emma wajswasser’s book character, bloopy the alien. children attending the event participated in a play based on bloopy’s story, learning about empathy and understanding. wearing handmade masks and guided by wajswasser’s narration, the children’s performance was a heartwarming reminder that hd families include all ages, and that joy can be found even in challenging circumstances.

a Strong, Colorful, and Heartfelt Community

the weekend reinforced the strength and vibrancy of the hd community.we are not defined by our diagnosis, but rather as authors, parents, children, dreamers, and warriors. gatherings like these serve as reminders of shared humanity, collective strength, and the beauty that persists despite challenges.

hd Reach was thanked for making the experience possible, along with everyone who participated by sharing stories, offering support, and listening. the event left a lasting impression, fostering new friendships, renewed energy, and a deeper commitment to purpose.

hd indeed has color. and it also has community, courage, and so much love.

faq About Huntington’s Disease

• what is huntington’s disease?

  a progressive brain disorder caused by a defective gene [1].

• how is hd diagnosed?

  through neurological tests, mental health evaluations, and family medical history [1].

• is there a cure for hd?

  currently, there is no cure, but treatments can help manage symptoms [1].

• how can i support someone with hd?

  by providing emotional support, assisting with daily tasks, and creating a stress-free habitat [3].