When my mom passed away from Huntington’s Disease on March 23, 2022, my grief quickly transformed into a drive to make a difference. Her battle with this rare, debilitating disease gave me firsthand insight into its devastating impact—not only on patients but also on families. Huntington’s Disease gradually steals an individual’s ability to move, think, and speak, often over many years. Yet despite its severe toll, it remains largely unknown and underfunded. I founded The Huntington’s Sports Club to change that. Through movement-based events, awareness campaigns, and a strategic partnership with the Huntington’s Disease Society of America (HDSA), we’re building a community to amplify the voice of the Huntington’s community and drive resources toward finding a cure.
As the youngest-ever chairman for the HDSA Pacific West region, I’ve worked alongside HDSA for two years, leading efforts to grow awareness and inspire action through impactful PR and marketing events. We aim to engage new supporters, bring much-needed visibility to the disease, and create innovative fundraising events. By merging our grassroots efforts with HDSA’s national platform, we can expand our reach and bring more focus to Huntington’s Disease.
Our partnership with HDSA has been instrumental in the success of The Huntington’s Sports Club. By joining forces, we can reach a larger audience, from regional media outlets to national supporters, amplifying the visibility of Huntington’s Disease. Through HDSA’s network, we tap into an established community of advocates, donors, and families affected by the disease. Working closely with HDSA also brings legitimacy and focus to our events, making it easier to gain media attention and attract participants from beyond the immediate Huntington’s community.
My role as chairman includes strategizing PR and marketing campaigns that put Huntington’s in the public eye. We rely on powerful, relatable storytelling, sharing both my family’s journey and the stories of others impacted by Huntington’s Disease. In doing so, we build connections and educate the public, fostering empathy and a more substantial commitment to the cause. We target our message through social media, email outreach, community press, and partnerships with influencers. Every campaign and event is crafted to convey that Huntington’s Disease isn’t just a rare illness—it’s a profound challenge that deserves attention and support.
HIIT HD Back is our flagship event and a powerful example of how our partnership with HDSA brings life to our mission. This high-intensity interval training event engages the community uniquely and actively. The movement represents the mobility that Huntington’s patients gradually lose, and participating in such an event fosters empathy and understanding. At our HIIT HD Back event, we raised over $10,000 for Huntington’s research. By providing participants with a challenging workout, we offer a meaningful experience that connects them to the cause.
Our marketing efforts for HIIT HD Back include targeted social media campaigns, email outreach, and press coverage. Working with HDSA, we align our messaging to ensure that the Huntington’s community and the wider public understand the purpose and impact of their participation. We also partner with local influencers and gyms, tapping into fitness communities that share our values. By marketing HIIT HD Back as both a workout and a chance to make a difference, we inspire diverse participation while educating people about Huntington’s Disease.
Another initiative we’re driving is Running for a Cure at the Eugene Half Marathon, where supporters can join our team to help fundraise and spread awareness. We position these events as opportunities to get involved at any level, whether someone is just learning about Huntington’s or deeply connected to the cause.
With every event, we’re not just raising money but building a strong, supportive community united by hope and action. The funds we raise go directly to HDSA’s research initiatives and family support programs, offering assistance to those directly affected by Huntington’s Disease. The visibility we create through our events also helps destigmatize Huntington’s, encouraging more people to talk about the disease and support the mission.
Our next HIIT HD Back event is in Spring 2025, and we’re working closely with HDSA to expand its impact. Our goal is to grow the event, attract more participants, and deepen engagement. With every story shared, every dollar raised, and every step taken, we’re pushing Huntington’s Disease out of the shadows and bringing hope to the Huntington’s community.
At The Huntington’s Sports Club, we believe in the power of movement—not only as an activity but as a movement for change. With HDSA, we’re using PR and marketing to turn our personal story into a collective mission, inspiring action and working toward a future without Huntington’s Disease. Through our partnership, we’re not just raising awareness but creating a community of advocates and allies who stand with us in the fight for a cure.
CATIE COOPER 
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