Meet Alexandra Gaudlap | Non-Profit Organization, Founder

We had the good fortune of connecting with Alexandra Gaudlap and we’ve shared our conversation below.

Hi Alexandra, do you have any habits that you feel contribute to your effectiveness?
Having a positive outlook has allowed me to navigate challenges most could not comprehend, focus on moving forward, and not backward, and help inspire people all around the world.

Being receptive, willing to listen, and considering other input outside my own has allowed me to grow my professional network and also become a leader who is very well respected in the community.

Can you open up a bit about your work and career? We’re big fans and we’d love for our community to learn more about your work.

The Raging Raymond Foundation, Inc. has a mission of spreading awareness about rare genetic conditions, impairing brain development and neurological development in children, advocating for their causes, driving research into the disorders, and seeking therapeutic interventions. We hope to support families through fundraising events, online support groups, webinars, and by providing resources. We believe in the power of community and aim to be the voice for those who need it the most.

What sets me apart from others is that I am not only in this for my son. I am in this for every person in the rare disease community. I want to help all families in this community have a better quality of life. I feel that I have been very fortunate in research being brought into my son’s disease. Still to this day, not being asked for $1 and it is because of that that I formed my foundation. I want to give back.

This journey has not been easy. I have grieved more over the last six to twelve months than I have in the last few years. I have cried and I have screamed. But I remained positive and did everything I could to find a positive in every situation. The Rare Disease Community isn’t easy to be a part of. However, what I will say is that it’s all about making connections and sharing your story. It is only then that we can help one another. We only know if you share and if you do, we will do everything we can to help you through we will do everything we can to help you get through.

Any places to eat or things to do that you can share with our readers? If they have a friend visiting town, what are some spots they could take them to?
Assuming that the weather is nice, I think all of my close friends and I would be up for a great trip to the Jersey Shore where we can relax. The ideal location would be a house on the water so we can enjoy glasses of wine on the porch while listening to the sounds of the ocean and watching the waves flood in. We would chat about life, the ups and downs of motherhood, and most likely think of unique ways to fundraise for my Non-Profit Organization and how we can improve ourselves while raising our kids.   Maybe escaping one or two times to the winery or a fancy restaurant close by. But relaxation in a house not full of kids is already a vacation itself. Though, if there’s one thing we all have in common, our kids come first. So even when we manage to have time to ourselves, the kids and their needs will always come first. I am very fortunate to have amazing friends, ones that don’t compete with others but instead compete with themselves to do better every day for our families, but also ourselves.

Shoutout is all about shouting out others who you feel deserve additional recognition and exposure. Who would you like to shoutout?
The mission of my organization has been inspired by my oldest son so I want to thank him for allowing me to find my true passion of helping others. He is courageous and resilient despite the challenges he has been given in life. Without him, I would still be a lost 21-year-old who wouldn’t find her way.

I would also like to thank Charles Steward from Genomics England. An amazing dad to two children with unique needs. He has been with me since I started my original website launch of www.vamp2.org and has been a great support along the way. He motivated me when I felt overwhelmed and praised me when I achieved milestones. I would not be where I am without him.

I want to thank all our VAMP2 Researchers who have contacted me to improve their studies and advocate for our community. Though we are a small community, I feel we are doing big things for the future. On my hardest days, all of them have given me a reason to get out of bed in the morning to advocate, educate myself, and help others. I will never be able to express the gratitude I have for everything all of you have done and the hope you have given me.

Lastly, I would like to thank the Rare Disease Community as a whole. My acquaintances, my friends, and those whom I have yet to cross paths with. It is through our children’s stories we can change the world. Whether I know you personally or not, your family’s story has and will inspire me to keep my organization moving forward.

Website: www.ragingraymondfoundation.org

Instagram: https://www.instagram.com/ragingraymondfoundation/

Linkedin: https://www.linkedin.com/in/alexandra-gaudlap-a804a5134

Facebook: https://www.facebook.com/raymondsstory

Youtube: https://www.youtube.com/@ragingraymondfoundation

Other: www.vamp2.org