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    • Home
    • Our Mission
      • Advocating
      • Note from Raymond's Mom
      • Raymond's Care Team
    • Work with Us
      • Our Supporters
      • Scientific Advisory Board
      • Professional Testimonials
      • Special Engagements/Media
    • VAMP2
      • Meet the VAMP2 Families
      • Genetic Information
      • Words from VAMP2 Parents
      • Health Updates
    • Blogs
      • Jack's Story
      • Jon's Story
      • Asia's Story
      • Will's Story
      • George's Story
      • Milica's Story
      • Lydia's Story
      • Raymond's Story
      • Anabelle's Story
    • Support Us
      • Jeans For Genes
      • Raging Raymond Tournament
      • Will's Hope
      • Monetary Donations
      • Online Store
    • Latest News
      • Research Updates
      • Community Involvement
      • Nemours Children's Health
      • Coming 2023
    • Contact Us
  • Home
  • Our Mission
    • Advocating
    • Note from Raymond's Mom
    • Raymond's Care Team
  • Work with Us
    • Our Supporters
    • Scientific Advisory Board
    • Professional Testimonials
    • Special Engagements/Media
  • VAMP2
    • Meet the VAMP2 Families
    • Genetic Information
    • Words from VAMP2 Parents
    • Health Updates
  • Blogs
    • Jack's Story
    • Jon's Story
    • Asia's Story
    • Will's Story
    • George's Story
    • Milica's Story
    • Lydia's Story
    • Raymond's Story
    • Anabelle's Story
  • Support Us
    • Jeans For Genes
    • Raging Raymond Tournament
    • Will's Hope
    • Monetary Donations
    • Online Store
  • Latest News
    • Research Updates
    • Community Involvement
    • Nemours Children's Health
    • Coming 2023
  • Contact Us

Meet the founder

Alexandra Gaudlap

Rare Disease Advocate & Mom

Connect with me

In 2018, the first case of a VAMP2 genetic variant was diagnosed in the United States. VAMP2 is now understood to cause neurodevelopmental disorders, such as visual impairments, movement disorders and epilepsy.


This site was created to spread awareness of this rare disease, advocate for the cause, help drive research into the disorder and ultimately look for therapeutic interventions.
As time goes on, more cases will be diagnosed. 


We as parents continue to remain positive for our children's future and hopeful for a cure. If you or a family member have been recently diagnosed, please join our closed Facebook group, "VAMP2 Gene Mutation" for support.


On behalf of all VAMP2 families, I thank you for visiting this site and showing interest in our stories.



 

March & April 2023 Updates

March 6, 2023, we published an article with Nemours Children's Health documenting our excellent care team. Once live, the link will be posted. 



Read Article

March, we welcome Laura from Poland who was diagnosed with VAMP2. 

Coming April, we will be publishing an article with Rare Revolution Magazine. Stay Tuned!

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