The Dancing Warrior with HD

There was a time when celebrating my birthday felt bittersweet. When I first found out I was gene positive, I struggled with the idea of getting older because it felt like each year was just a step closer to the unknown. But then God showed me how precious each day truly is. I realized that I was not symptomatic yet, and so many others were facing greater challenges than me. That was my wake-up call. I needed to start truly living, cherishing every moment, and making the most of the time I have been given. Looking back now, I see all the beautiful memories I have made, and I am so thankful for each one.   This year, I had a truly wonderful birthday. My husband surprised me with a cold plunge and sauna for our home, knowing how much I have benefited from them at the yoga studio. He set everything up so we could use it right away in the morning. We enjoyed a peaceful breakfast together, and later that evening, we went to dinner with his mom and stepdad at Zócalo’s.   One of the ...

  It’s hard to believe we are already into February—time is flying by! As I’ve been reflecting on what to share with you all, I realized that I want to highlight some of the incredible people in my Huntington’s Disease (HD) community who have deeply impacted my life. There are so many individuals who have left their mark on me, and I’d love to share their stories, one at a time.   I’ve already told you about my dear friend Bryan Medrano, but today, I want to share about Beth and Stan Johnson and their beautiful family. I first met them through the local HD chapter in Sacramento, CA, at an event with Bryan. If I remember correctly, it was a golf tournament, and the moment I shared my story with them, they immediately welcomed me into their lives. From that day forward, I was part of their world, attending every fundraiser they hosted—from basketball tournaments and bowling nights to gala dinners.   Beth and Stan had a son, Jeff, who was symptomatic, as was Stan himself. Bu...

  As new year begins, I find myself reflecting on this past year with a heart full of gratitude. Despite the challenges, God’s presence in my life has been a constant source of strength. Living with Huntington’s disease is not easy, but His love and grace sustain me every single day. He fills my heart with joy, even when life feels overwhelming. One of the hardest adjustments this year was losing the ability to drive. Driving represented my independence, and giving that up has been a difficult transition. But through this challenge, God has shown me how truly blessed I am. My family and friends have rallied around me, ensuring I get where I need to go and making time for me in ways I never expected. Their support has been an incredible gift, and I’ve cherished the extra moments we’ve spent together. It’s a reminder that even in the hardest seasons, God is working to create something beautiful. I also want to take a moment to thank everyone who reached out to me this past year—wheth...

As November rolls around, I find myself reflecting on everything I’m thankful for this year. It’s the perfect time to pause and appreciate the many blessings in my life. Sharing My Story First and foremost, I’m incredibly thankful for the opportunity to share my journey through this blog. Starting it earlier this year has been such a rewarding experience. It’s given me a platform to connect with others and put my thoughts and experiences into words. While I had hoped to post more frequently, I’ve learned to embrace my husband’s wise advice: do my best, let go of rigid schedules, and focus on the joy this brings me. My Rock, Fernando I can’t express enough gratitude for my husband, Fernando. He has taken on so much this year, especially since I’m no longer able to drive. From managing our finances and property to cooking, cleaning, and driving me to countless appointments, he does it all with love and patience. Navigating the challenges of my disability hasn’t been easy, but God truly k...

  The next topic I’d love to share with you is the HDSA National Youth Alliance (NYA). This incredible group brings together young men and women, ages 9 to 35, from across the country, empowering them to get involved with their local HDSA chapters, fundraising events, and advocacy efforts for Huntington’s disease (HD). It's a space where young people can connect, share their experiences, and support each other. I’ll never forget my first national convention in Atlanta, Georgia in 2004. I had heard so many wonderful things from people on the HDSA board about how life-changing these conventions could be, and I was beyond excited. When I arrived, I immediately felt like I had found my tribe. For the first time since testing gene-positive, I wasn’t alone. I was surrounded by others my age who understood what I was going through because they had similar stories. It was truly eye-opening. One of the best parts of the convention is NYA Day, where the group gets together for fun activities...

  I want to share the story of how I got involved in organizing the first five years of the Team Hope Walk - Sacramento. This is the Huntington’s Disease Society of America’s (HDSA) fundraising and awareness raising event in Sacramento. I had been actively volunteering with HDSA, helping with various events and activities. After attending several walks, I remember when Penny Riley, a wonderful woman who worked for HDSA, asked me if I’d like to host and organize the first walk in Sacramento. Penny has always been like a mother figure to me, and even after all these years, she’s still a part of my life—a true angel. I was beyond excited that Penny thought of me for this. My best friend, Kristen Stoll, and I co-ran the event. We pulled together an amazing team of friends and family to help with planning. We held our first walk in William Land Regional Park, a place that holds special memories for me, as it’s where I grew up. Friends and family, including my dad, helped gather raffle d...