The Dancing Warrior with HD

  Hello and happy summer to you all! I’ve been thinking about what to share with you next, and I kept coming back to this feeling in my heart about highlighting another amazing HD warrior. Her name is  Stacy Cushenberry , and if you’ve ever had the privilege of meeting her, you know just how special she is. Stacy was the  very first person  I met at my very first HDSA National Convention, many years ago. I remember feeling so overwhelmed at that event, unsure of what to expect. And then I met Stacy—and just like that, I didn’t feel so alone anymore. Her story is powerful. Stacy lost her mom to Huntington’s disease when she was younger. She later got tested and found out she does  not  carry the HD gene. But her younger brother tested positive and is now symptomatic. He is married and has a little one, and he is incredibly talented—every year at the convention, he would play guitar and sing in the talent show, always touching everyone’s hearts. Stacy has nev...

  HD Awareness Month: Celebrating Friendship, Faith, and a True Warrior Hello, friends! It’s May, which means it’s Huntington’s Disease Awareness Month—a time that is close to my heart. Every year during this month, I take time to spread awareness about HD, answer questions, and share more about what this journey has looked like for me. It’s also a special opportunity to honor the incredible people in my life who are walking this path with me. And this year, I want to highlight someone very near and dear to me—my best friend and fellow HD warrior, Amy Fedele! Amy and I first met at a local HD convention. She had taken over organizing the Sacramento walk that I originally started, and that day she was there promoting the event. We struck up a conversation, and something just clicked between us. Not long after that, we saw each other again at the national convention in Los Angeles. We spent so much time together there and by the time the September walk came around, we had already bec...

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...