How October’s advocacy events sparked connection, HD awareness

This October has been one of the most inspiring and empowering months of my life as a Huntington’s disease (HD) patient advocate. I had the incredible opportunity to participate in three major advocacy events, each one special and impactful. Speaking to future doctors, celebrating with my dream medical team, and sharing the stage with other advocates were moments that highlighted just how powerful a voice can be when it comes to awareness and change.

Talking to medical students

Speaking to 200 medical students at Case Western Reserve University’s School of Medicine on Oct. 15 was both exhilarating and nerve-racking. Standing in that room, surrounded by students in their pristine white coats, I felt the weight of the moment, knowing that my story could shape how they approach future patients. The tall, modern architecture with its sleek glass windows created a space that felt both grand and welcoming.

The students were deeply engaged, and their questions reflected a genuine desire to learn. They asked about my experiences navigating the healthcare system, the challenges of living with HD, and ways they could support future patients who might face similar obstacles.

The positive feedback I received after my talk was truly humbling. Knowing that I’d planted seeds of empathy and understanding in these future doctors filled me with gratitude and a renewed sense of purpose. It reminded me that, through sharing our stories, we patients can shape the future of medicine.

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Attending an HDSA gala

Just a few days later, on Oct. 19, I attended a benefit gala hosted by the Huntington’s Disease Society of America (HDSA) Northeast Ohio Chapter. This annual event is always a highlight of my year, but this year’s theme, “Moulin Rouge,” added a flair to the evening. The black-tie event was breathtaking, with elegant decor and a live band playing enchanting melodies that set a festive yet heartfelt tone. The organizers had gone all out, transforming the venue into a space that felt both luxurious and warm. The food was exceptional, and I felt pampered as I mingled with friends and dedicated supporters of HD research.

One of the most special parts of the evening was being in the company of my medical team — my dream team of doctors whom I rely on. Seeing them at the event, all dressed up and enjoying themselves, was a reminder of how much they genuinely care about their patients. This work isn’t just a job for them; it’s a calling.

The event raised an impressive amount of funds for HD research, and knowing that we were making tangible progress toward a cure was the perfect capstone to a beautiful evening.

Giving a keynote speech at the NORD summit

The following day, Oct. 20, I traveled to Washington, D.C., for the National Organization of Rare Disorders (NORD) Breakthrough Summit, where I was honored to be a keynote speaker. The summit is a world-class event that brings together researchers, pharmaceutical companies, medical professionals, and families affected by rare disorders. This year’s event was attended by nearly 1,000 people, each with a unique story and perspective on living with or supporting someone with a rare disorder.

The atmosphere was electric with a sense of purpose and unity, and the NORD staff ensured that every aspect of the event was top-notch. During my speech, I spoke about the challenges and triumphs of living with HD, touching on the misconceptions and isolation that often accompany it. I could see the audience was moved as I shared how HD has affected my life, and I felt a deep connection with the families in the crowd who were also navigating their own rare disease journeys.

In addition to sharing my story, I had the chance to listen to other advocates and learn from the educational seminars. Meeting so many brave people living with different rare conditions reminded me of the resilience and strength within this community. The positive feedback I received was overwhelming.

A month to remember

Reflecting on these three events, I’m filled with gratitude for the incredible opportunities October brought my way. Each experience offered a chance to educate, inspire, and connect, and reminded me why I’m so passionate about advocacy. Every story shared, every hand shaken, and every moment of connection solidified my commitment to making a difference in the lives of those affected by HD and other rare disorders.

These advocacy events have left a lasting impact on me. They’ve reminded me of the power of community and the importance of standing up for those whose voices might otherwise go unheard. I’m beyond thankful for the positive feedback and support I received and look forward to many more opportunities to advocate, educate, and connect.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.