Celebrating Friendship,Faith, and a True Warrior

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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 become fast friends.

From there, our friendship blossomed in the most beautiful way. Amy would drive up to visit me and we’d spend the day doing all kinds of things—grabbing food at our favorite spots, going to the movies, boating, paddleboarding, or planning spontaneous road trips. We’ve explored Half Moon Bay, Tahoe City, Nevada City, Grass Valley, and Rollins Lake together, just to name a few.

One of the most incredible memories I have is when Amy came to celebrate my 40th birthday. Just months before, she had been in a coma for a month and was still recovering. But there she was—by my side, showing up with her amazing strength and heart. That is just who she is: strong, faithful, loyal, and full of life.

While HD is something that bonds us, our faith in God is an even deeper connection. Amy is a beautiful woman of God. She gives so generously of herself—always ready to lend a helping hand, always thinking of others. She adores her family and friends and lives life with such vibrant joy. She has so many accomplishments, I could hardly list them all.

She was awarded HD Person of the Year at the LA convention, and later she was honored locally at one of our Sacramento events. In the most selfless act, Amy made sure they re-honored me that same year since my recognition had been postponed due to COVID and done virtually. She didn’t want the spotlight on herself—she wanted to share it. That’s Amy. Always lifting others up. Most recently, she was honored again last October at a beautiful gala, and I was beyond grateful to be there with her to celebrate.

There are so many more memories I could share, but we’d be here all day—and the truth is, we’re just getting started. I am beyond blessed to have Amy in my life. She is not just my friend; she is my sister in Christ, my partner in this HD journey, and one of the biggest blessings God has ever given me.

This May, as we recognize Huntington’s Disease Awareness Month, I encourage you to take the time to learn more, ask questions, and reach out to those who are affected. HD is a difficult journey, but it’s also full of hope, community, and love. And I couldn’t ask for a more faithful, inspiring companion than Amy to walk this road with.

Here’s to HD awareness, to strong friendships, and to the grace of God that carries us through.

With love,
Ashley 💙


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