The Power of the HDSA National Youth Alliance

-

 

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 like baseball games, bowling, and other events. These activities weren’t just about having fun (though we had plenty of that!) but also about bonding and sharing our stories. After the activities, we’d sit down and discuss different topics that were important in our lives, which always left me feeling uplifted and understood.


Another highlight of the convention is the annual Talent Show and Silent Auction. Not only is it fun to watch everyone perform and participate, but these events also raise money to provide scholarships for young people to attend the convention—something I’m so grateful for, as I’ve been awarded scholarships multiple times. Without this support, attending the convention might not have been possible for me. The night of the convention gala is another favorite of mine, where we dance the night away. I love seeing the juvenile HD kids take center stage—they are always the belles of the ball, and it’s heartwarming to see people bid for a chance to dance with them during the auction.


Over the years, the friends I’ve made through the NYA have become a huge source of support in my life. People like Stacy Nichols and her brother Scott, David Tovar, Tiffany Lupton, Jake Reynolds, Cathy Coyler, Jenny Hill, Lauren Naomi, Amanda Kahley, and the sisters Lauren and Jesse LaRosa have all left lasting impressions on me. We were all around the same age when we met, and those friendships have stayed strong over the years.


I truly cherish the connections and memories I’ve built with this incredible group. Being part of the HDSA National Youth Alliance has not only helped me cope with my HD journey but has also empowered me to give back to the HD community, helping others feel less alone, just as I did at my first convention.


Comments

Post a Comment

Popular posts from this blog

My mom another HD Warrior

-
Image
  Hello, welcome back I am Ashley Fajardo and I wanted to share a little of my history. I want to share about my mom, Sandra Lane. She was a beautiful woman who had a smile that could light up any room. She loved to travel and was always very athletic. She had a laugh, that was contagious. She loved her two kids more than anything they were her whole world, my brother Courtney and me.   However, when I was born, she was already beginning to show signs of Huntington’s disease at age __30__. Which is a neurological disorder that causes deterioration in a person’s physical, mental, and emotional abilities usually during their prime working years, and currently there is no cure. Most people start to develop symptoms in their 30’s to 50's. Symptoms usually worsen over the course of 10-25 years and affect the ability to reason, walk, and talk. It is a genetic disorder which means Each parent with a defective gene could pass along either a defective copy or a healthy copy, leaving a ...
Read more

Welcome Warriors - Hello from Ashley

-
Hello my name is Ashley Fajardo, I’m 39 years old (2023), and I have Huntington’s disease (HD). I chose to take the genetic test when I was 18 years old because I wanted to know what to expect for my future. I always knew I wanted to know, to look truth in the face. Huntington’s disease (HD) is genetic and I inherited it from my mom. After I tested positive I immediately joined the Huntington’s Disease Society of America (HDSA) and started volunteering.   I also decided for myself to live life to the fullest.   I really have lived a big, blessed, full life that God has provided.   I was diagnosed symptomatic 8 years ago in 2015. That’s when I really started to search for options that would help me to keep my symptoms dormant for as long as possible. I started changing what I ate. I already was a athlete my entire life so exercising was my happy place. I always loved to try new things and challenge myself. I have been doing CrossFit for 11 years. I enjoy yoga — even hot yo...
Read more

My journey with genetic testing: a personal reflection

-
  The next thing I want to share with you is about my experience with genetic testing. When I was in high school my brother, who is 10 years older than me, was getting married and he wanted to know if he was a carrier for Huntington’s Disease (HD) or not before having children. As we’ve talked about before on this blog, if a parent is positive for HD they have a 50% chance of passing it on to each biological child.  I remember my brother Courtney going through this process with his wife Jamie. He tested negative for HD and in turn he will never have symptoms or pass it on to any children. My brother now has twin boys that are healthy and happy. They just turned 14.  So when I turned 18 I decided that I wanted to be tested. Everyone thought I was too young and many people tried to talk me out of it but I was determined to get the genetic test done. I was a senior in high school when I started my testing process. It is a long process to get through. You are required to go t...
Read more