Celebrating Growth, Overcoming Challenges, and Continuing the Roar: A Year in Review

It’s hard to believe that it’s already been seven years since our journey began. Seven years of challenges, triumphs, and unwavering determination. One year ago since we officially hosted our very first Roar 5K, and we are so incredibly grateful for all the support we’ve received and the growth we’ve experienced as a foundation. Today isn’t just a momentous occasion; it’s also Rare Disease and Disorder Day, a day that holds special significance for me and my family.

A Day of Reflection

For the last seven years, I’ve been acknowledging February 28th (or February 29th during leap years) as an important day of reflection. It marks the journey that has shaped our lives in ways we never expected. As many of you know, Leona, our Chief Inspiration Officer, was diagnosed with a rare genetic disorder called 15q26.3, along with Intellectual Disability (IND) and, more recently, an Autism diagnosis.The doctors told us that her life expectancy would be limited, and we were given a very grim prognosis.

However, we are incredibly blessed to share that Leona will be turning 7 this coming April! She has defied the odds and continues to be a true inspiration to all who meet her. She has lived a life full of love, strength, and courage, and embodies the mission of Let Leona Roar Inc. every single day.

The Birth of Let Leona Roar Inc.

The idea for our foundation was born from the darkest moments of motherhood, a time when I struggled to find answers, resources, and support. It was through my community that I found the guidance I needed to understand what services, benefits, and resources were available, not just for Leona and me, but for others in the same situation.

As we continued to grow, I realized how important it was to share this information with others, to provide the same sense of community that had helped me. This led to the creation of Let Leona Roar Inc., a foundation focused on Activity, Recreation, and Education (ARE)—or, in other words, creating a space for families to come together, share experiences, and access vital information and support.

Leona’s Journey

As we continue to navigate the challenges that come with Leona’s rare genetic disorder, 15q26.3, along with her Intellectual Disability (IND) and Autism diagnosis, there have been many hurdles along the way. There have been countless doctor' visits, therapy sessions, and a steep learning curve as we’ve worked to understand and support Leona’s needs.

Though these challenges have been overwhelming at times, we are thankful every day for the community that continues to uplift us. Through shared knowledge and resources, Leona and I are learning, growing, and thriving together.

The Heart of Let Leona Roar Inc.

At Let Leona Roar Inc., our mission is simple: we are here to offer support, share information, and give back much-needed resources to those who need them. Whether it’s through workshops, mindfulness events, or educational panels, we are committed to being a source of strength and knowledge for those navigating similar journeys.

As we reflect on the past year, we are proud to have been recognized and nominated for the prestigious "Champion of Hope" national award. This recognition is a testament to the power of our community and the impact we’ve been able to make together.

We’ve also had the opportunity to conduct workshops, host mindfulness events, and facilitate educational panels aimed at empowering families, caregivers, and individuals impacted by rare diseases and disorders. Additionally, we were featured in two local articles that highlighted the work we’re doing and the support we offer to our community.

Looking Back and Moving Forward

As we look back at all that we’ve accomplished, we are filled with gratitude. From Roar 5Ks to educational workshops, from national recognition to local outreach, we’ve made so much progress—and we couldn’t have done it without you.

We are beyond excited about the direction we’re heading and the continued impact we’ll have on our community.

We’re looking forward to all the possibilities that the future holds, and we’re grateful for your continued support as we grow. Together, we will keep roaring, keep educating, and keep making a positive difference.

Warm regards,

Amanda Carrasquillo

CEO/Founder, Let Leona Roar Inc.