We’re excited to introduce you to the always interesting and insightful Alexandra Gaudlap. We hope you’ll enjoy our conversation with Alexandra below.
Alexandra, thanks for taking the time to share your stories with us today Let’s kick things off with talking about how you serve the underserved, because in our view this is one of the most important things the small business community does for society – by serving those who the giant corporations ignore, small business helps create a more inclusive and just world for all of us.
Raging Raymond Foundation, Inc. serves the rare disease community, an underserved community all around. As of 2023, there are 7,000 rare diseases documented. Due to a lack of knowledge on rare diseases, you can imagine a lack of information provided to the patients and families of these diseases and the community for therapeutic interventions. A year and two months after Raymond received his official diagnosis of the ultra-rare VAMP2 I published www.vamp2.org in hopes to spread awareness of this rare disease, advocate for the cause, help drive research into the disorder, and ultimately look for therapeutic interventions. The website included important information related to the different patients of VAMP2 as well as the different variants. By April 2023, less than a year after the website launched, we had three research teams around the world working on VAMP2. One of the teams was inspired by VAMP2.org to begin their work.
Although patients and families are not professionals (most of the time) they play an important role in research because of their perspective. Including the patients and families gives you a better chance of reaching the research’s full potential.
The Raging Raymond Foundation is committed to making a positive impact in the community through some of the following: events, fundraising, networking, sharing stories, support groups, and webinars. Our website is still in the works while we await our 501 (c) (3) tax exemption status, but you can visit www.ragingraymondfoundation.org to stay up to date on how we are making a difference in the community.
Alexandra, love having you share your insights with us. Before we ask you more questions, maybe you can take a moment to introduce yourself to our readers who might have missed our earlier conversations?
My name is Alex Gaudlap, mother of Raymond who has been through more than most six years olds you know. Raymond was born in June 2016 at Camp Lejeune Naval Hospital. From day one I felt something wasn’t right and my motherly instinct never really let up. When Raymond was one month old, I started to get concerned. Doctors where we were stationed in North Carolina assured me Raymond was happy; simply taking his time with milestones. Specialists agreed. When Raymond turned one, I was even more concerned. He was still sleeping most of the day and nowhere near where the typical one-year-old should be at developmentally.
In 2017, I moved back to New Jersey with my husband coming at a later time after approval from his unit. When arriving back in New Jersey, I was fortunate enough to meet with a Geneticist immediately. This Geneticist ran an exome panel which eventually came back with answers that were shocking to all of us. NORMAL.
In June 2018, on Raymond’s second birthday, he was diagnosed with Cerebral Palsy but continued to progress despite the slow results. He was now sitting up on his own, finger feeding, and beginning to work with a gait trainer.
In February 2020, we visited the Undiagnosed Disease Program at the National Institute of Health in Bethesda, MD, and were advised to rerun our genetic panel as they did not believe he was a true Cerebral Palsy patient.
In June 2020, we received the diagnosis of a VAMP2 gene variant. The first case had been found a year after Raymond’s original genetic panel as updates had been made to what genes can be found on genetic testing.
I had Raymond when I was 22 shortly after I got married. The years leading up to Raymond’s diagnosis were the hardest years of my life. They have taught me forgiveness, love, patience, and sacrifice. They have taught me more than ever that life is hard, and life is never the picture you thought it would be. Because of Raymond, I have become the person I am today and will continue to push myself to be the best mother and individual I can be. Raymond’s constant smile has made the hard days worth living and I will forever be honored to be chosen as his mother.
To me, life is not all about the materialistic things that most enjoy. It is about being around people who strive for happiness and growth. Being uncomfortable has become my new normal and has allowed me to be grateful for all I have been through and all I will eventually achieve.
The year 2022 was a year that I put all of my crazy ideas down on paper and started to plan. Because of the support I receive from my family and friends 110% of the time, I have been able to achieve my goals much quicker than I could have ever imagined.
With that being said, Raging Raymond Foundation Inc. will be finalized in 2023. Our goals for the Foundation will be to continue to spread awareness on VAMP2 variants, advocate for the cause, help drive research, and ultimately look for therapeutic interventions.
As we spread awareness of the ultra-rare VAMP2 we will also continue to help other members of the community advocate for their rare diseases and search for therapeutic interventions.
We’d love to hear a story of resilience from your journey.
The early days of Raymond’s diagnosis were a constant run around. We were at Nemours Children’s Health’s main hospital and satellite clinics multiple times a week for testing and/or therapies and when we weren’t there for those, we were receiving services at home through Early Intervention. As things have settled down but still remained chaotic in other ways, I have started to grieve my son’s diagnosis. Something that came to me so randomly and has brought me a ton of emotions I have never experienced before. I have a constant feeling of guilt knowing that Raymond may never experience life like the typical child. Though it is not my fault as a mother my heart breaks.
As most people can probably agree, talking about yourself is one of the most difficult things to do. I struggle to find the words to explain the strength I have been forced to hold over the last seven years. When people ask me, “How do you do it?” I just respond with “What choice do I really have?”
Despite the grieving that I have begun to process I have found a version of myself that I never knew existed and that I know I would not be without having Raymond.
Having Raymond as my firstborn has made me the woman I am today, a successful advocate and entrepreneur. A confident mother who goes above and beyond for her three children and will never lose hope even when it seems impossible to have. All three of my children have taught me something new about myself that I will forever be grateful for.
I only hope to continue to inspire the community with my strength. Even though something is impossible it is always worth fighting for.
Have you ever had to pivot?
As stated previously, the website www.vamp2.org was created in hopes to spread awareness of this rare disease, advocate for the cause, help drive research into the disorder, and ultimately look for therapeutic interventions. I originally had a goal to form a foundation in three to five years when I knew that all three of my children would be in school and I would have the time to make this my full-time job. However, after the website received so much publicity I knew that I had to keep things moving forward. With that being said, in less than one year I began the formation of the Raging Raymond Foundation and had to learn to juggle 60-80 hours a week of working all hours of the day between being a mother, a rare disease mom, and a wife. This has been the most exhausting but rewarding year of my life and I am forever grateful for all of the opportunities that have been given to me. I will always remind myself and others that it could always be worse, so we need to appreciate everything we have.
Contact Info:
- Website: www.vamp2.org www.ragingraymondfoundation.
org - Instagram: https://www.instagram.com/vamp2mama/
- Facebook: https://www.facebook.com/raymondsstory/about/
- Linkedin: https://www.linkedin.com/in/alexandra-gaudlap-a804a5134/
- Youtube: https://www.youtube.com/@ragingraymondfoundation