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 of 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 www.vamp2.org 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 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. She hopes to travel the world someday sharing what has gotten her through the hardest years of her life. The definition of a dedicated Advocate.
Ryan is an award-winning disability advocate, speaker, and professional persuader with over a decade of experience ranging from work on Capitol Hill and federal government to positions with non-profits and global PR firms. His specialties include media relations, corporate communication, organizational branding, and crisis management.
Despite the fact that his favorite cinematic character is Ferris Bueller, or that he was once accused of cheating on his metaphysics exam by looking into the soul of the boy next to him, Ryan considers himself an advocate of fairness and hard work. Known for his tenacity, he knows the importance of pushing forward despite obstacles.
Diagnosed with cerebral palsy at birth, Ryan is an advocate for members of the disability community. Presenting globally to corporations, government agencies, and nonprofit organizations, Ryan infuses his passion for advocacy and knowledge of disability to help organizations create more inclusive workspaces. Communication through education and an ongoing dialogue are at the center of his approach to combat stigma and stereotypes surrounding disabilities. Through various endeavors, both personal and professional, Ryan’s advocacy aims to raise awareness, influence public policy, and spur social change. Ryan’s advocacy has been featured in The Washington Post, FOX News, and the nationally syndicated column, Savage Love. Ryan’s work also earned him a spot on LinkedIn’s “Top Voices in Disability Advocacy” in 2022.
Currently, Ryan serves as a Public Affairs Specialist at the United States Department of Labor within the Division of Media and Editorial Services directing and coordinating all public and employee communications. Serving as an agency spokesperson, Ryan works with the media to promote agency policies, programs, and initiatives and drafts communication on behalf of executive leadership.
Prior to joining the Department of Labor, Ryan spent a near-decade with the United States Patent and Trademark Office promoting American Innovation and protecting the value of intellectual property through myriad roles. As a Writer-Editor in the Office of International Patent Cooperation, Ryan drafted and edited pivotal documents surrounding Patent Classification and Standards. Previously, with the Service Desk Operations Division, Ryan served as the Internal Communications Manager working daily on the planning, development, and execution of communication within the division and across the agency related to IT services. As a Public Affairs Specialist in the Office of the Chief Communications Officer, Ryan worked to inform the public as well as key stakeholders about the valuable role of intellectual property throughout the country and around the world. Through his relationship with the media, Ryan promoted the agency’s key initiatives helping drive American innovation. In addition, Ryan’s work focused on internal communication to all of the agency’s 13,000 employees with an emphasis on employee engagement.
Ryan's federal service began with the United States Department of Health and Human Services, as part of a dedicated team serving the Office of the Assistant Secretary for Public Affairs helping educate and inform the public about key provisions of the Affordable Care Act (ACA). Ryan's work included the development of effective communication strategies related to the promotion of the ACA, including branding strategy, media targeting, and audience outreach, particularly through social media.
Ryan is the founder of Wild Pitch Media, a public communication consulting firm. Emphasizing both new and traditional media, Wild Pitch Media consults clients on various aspects of their organizational communication and branding. From research and audience targeting to message strategy and tactics, the firm empowers clients with the tools necessary to produce compelling result-oriented communication.
Ryan holds a master's degree in strategic communication from American University in Washington D.C. and a bachelor's degree in English from the University of Puget Sound in Washington state.
Bio coming soon
Michael graduated with his undergrad degree from Samford University in Birmingham, AL. His major was Language & World Trade with an emphasis on Spanish. After working in sales and business development for several years, he went back to school to learn more languages, but this time with the emphasis on computer languages. He did his studying and training through a program at Vanderbilt University where he learned multiple software languages.
Currently, Michael works for Locumsmart, which is under the umbrella of CHG Healthcare, the leading healthcare staffing agency in the US. Locumsmart is industry leading VMS for locum tenens staffing. Michael has worked in healthcare staffing and technology since 2006 where he started as a CRNA recruiter for Medical Doctor Associates (now Cross Country Locums). Spending the majority of his career with Locumsmart, starting in 2009, he has filled many roles from sales to event planning before finding his true passion and ending up as a software developer for them.
Michael started to become active in the rare disease community after he Alex's family. His involvement includes participating in Steptember each year with CPARF, volunteering with the Raging Raymond Foundation, and attending the RARE Advocacy Summit.
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