A nonprofit board of directors is a group of individuals who are elected to govern and oversee the organization’s operations. The board is responsible for setting the organization’s mission, strategy, and goals, and ensuring that the organization operates in compliance with legal and ethical standards. The board of directors is also responsible for ensuring the organization’s financial stability and sustainability.
Alexandra Gaudlap is the Founder of the Raging Raymond Foundation, an international advocacy organization based out of New Jersey.
She is one of the many people who did not plan to be part of the rare disease community but has found her true passion through it.
At the age of 22, Alex gave birth to her rainbow baby, Raymond. From the day he was born he had an obvious global developmental delay but no doctor where she was living wanted to diagnose it.
When Raymond turned one, Alex moved back to New Jersey, leaving her husband at the military base. This was a difficult decision, but much needed to work towards getting Raymond diagnosed.
When returning back to New Jersey, Alex had a genetic panel done on Raymond that came back normal. Unfortunately, the results of the test came back and they were shockingly normal. After Raymond received the umbrella diagnosis of Cerebral Palsy at age two, Alex began her advocacy work. She knew Raymond was in the rare category.
After a reanalysis of Raymond's genetic panel was done in 2020, he received a diagnosis of a variant on the VAMP2 gene. He was one of the 11 patients in the world. As a mother, Alex went online in search of answers and was unable to find much, and what she could find she didn't understand.
Alex didn't want any other family to feel this way and went on a mission to spread awareness and a better understanding of this Ultra-Rare Neurodevelopmental disorder.
Alex published this website in August 2022 in hopes of working toward a cure and bringing families and researchers together within five years. She has been extremely successful and made this happen in less than one year.
In Alex's free time, you can find her spending time with her husband, three children, and two dogs. She also enjoys working on her advocacy work (yes in her free time, too), attending conferences, reading Scientific Books, and writing about her journey as a Rare Disease Caregiver. The definition of a dedicated Advocate.
Biography coming soon
Biography coming soon
Copyright © 2022 Vamp2 - All Rights Reserved.
Usamos cookies para analizar el tráfico del sitio web y optimizar tu experiencia en el sitio. Al aceptar nuestro uso de cookies, tus datos se agruparán con los datos de todos los demás usuarios.