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Life & Work with Andrea Villegas

Today we’d like to introduce you to Andrea Villegas.

Hi Andrea, so excited to have you on the platform. So before we get into questions about your work-life, maybe you can bring our readers up to speed on your story and how you got to where you are today?
Born and raised in Bogota – Colombia but have called Miami, FL home for the past 18 years. Miami is the city where I married and became Mother to three amazing boys. They were life-changing, to say the least, as my second pregnancy, with twins, came just three months after having my firstborn, Emilio… in other words, as if I had triplets and all that entails. When he turned nine months old, my firstborn Emi was diagnosed with Neurofibromatosis Type 1 by Dr. Mislen Bauer who, at the time, was the Director of the Department of Genetics at Miami Children’s Hospital. Soon after his diagnosis, my family and I struggled to find information and services but we did have an amazing support system in our extended family and with Dr. Bauer. As Emi grew and developed, we realized that if we were struggling, there had to be countless other families with children also diagnosed with genetic differences also seeking information, services, and emotional support. Together with Dr. Bauer, and per Emi’s wish we established the GENES Foundation in 2015 with the purpose to provide early intervention, emotional support, and coordinating family-centered services to meet the needs of children with genetic conditions and their families. We wanted to quickly identify the most vulnerable families, those affected by a genetic condition, intellectual and/or physical disability, and support them with the help of our network of allies. Through our Alliance Network, we generate social awareness about the importance of mental health, effective and effective inclusion, and humane and empathetic medical advice. The success of the foundation has allowed the network to grow internationally as we currently have six country members in our alliance: Argentina, Colombia, United States (Miami), Mexico, Paraguay, and Peru.

In summary, GENES Miami provides support, resources, and opportunities to children, families, and communities touched by genetic differences in South Florida to help affected children reach their maximum potential, with their families as their first and best line of support. To achieve this, we:

1. Educate families about their diagnosis and connect them with resources/therapy options.

2. Promote inclusion in the communities where they live, learn, work, and play.

3. Provide spaces where families and their children / young adults can create a network of support for life. We also promote activities for these children / young adults so they can socialize and be trained to feel that they have a lot to contribute to society.

4. Given the exceptional expertise of the medical professionals within our network in Miami, we extend access to them to our ally foundations in Latin America. These professionals not only provide valuable training but also assist with the complicated diagnosis of the genetic order.

We wouldn’t be able to provide this much-needed support to families in need if not for our most valuable assets who are our partners: doctors, psychologists, family therapists, special aid teachers, and Emi’s family and friends that volunteer their time with professionalism and a giving heart.

Unfortunately, Emi passed almost four years ago due to a malignant tumor. But he will always be our guardian angel and his spirit IS what drives us forward. He would be 17 years old this year and his teenage brothers and friends’ commitment is a vital part of our organization.

We all face challenges, but looking back would you describe it as a relatively smooth road?
Running a nonprofit is not an easy task, it is very challenging and requires a great deal of energy along with a willingness to move forward. We are still a very small organization thus we do our best to fundraise creatively especially when appealing to individuals who have not been exposed to genetic illnesses in any way. It is important to emphasize that people with genetic conditions are extremely vulnerable to emotional struggles due to a lack of socialization. An area we were focusing on when the first wave of Covid reached us. So many of our socializing activities had to be moved from in-person to virtual which given the context is not the most effective way of helping these children. The international expansion was also impacted given restrictions on travel, and while in-person meetings and trainings can be more impactful, we were able to reach even more individuals and families as we moved to virtual presentations.

Alright, so let’s switch gears a bit and talk business. What should we know about your work?
I’m very proud of what I do, as this foundation not only allows me to continue Emi’s legacy, which he was very clear on wanting this to move forward, but I’m also impacting so many lives. I know firsthand how it feels, the value that this network provides; therefore it is not just about “my work”, it is about the impact.

What does success mean to you?
If we are able to help a family receive a true diagnosis, provide them with the information, give them the emotional support system they need, we have been successful. Each family is a world of its own, what better success than aiding a whole world?

Contact Info:

Image Credits
1) Andrea Villegas & Emilio Pachon 2) GENES Foundation Dance Team 3)GENES Foundation Volunteers 4) Camilo & Sebastian Pachon and Fabian Jimenez

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