Landon’s Story
After time in the NICU and a series of unexplained medical concerns, Landon was diagnosed via genetic testing with Gould Syndrome at just 6 weeks old in 2021.
Gould Syndrome affects many parts of his body. He lives with epilepsy, cortical visual impairment (CVI), microcephaly, dystonia, is G-tube dependent, and experiences developmental delays. But his diagnosis is only one part of who he is. It does not define him.
When we first received the diagnosis, we grieved. We were handed a single sheet of paper with a brief paragraph and limited understanding of what this would mean for his future. Like many rare disease families, we were left navigating the unknown.
Not long after, we connected with Dr. Gould and began learning how we could be part of something bigger. We started organizing Landon’s Lap, helping grow awareness and research for this rare condition. In just 4.5 years, the progress, community, and momentum we’ve seen has been incredible. But there is still so much more to be done.
Landon is full of joy. He loves his older brother (especially cheering him on at sporting events), music, lights, animals, being outside, and switch toys. He shows us every day that there is so much more beyond a diagnosis.
By supporting this fundraiser for Gould Syndrome Awareness Day, you’re helping bring awareness, fund critical research, and create a future with more answers, for Landon and so many others like him.
Make a gift in honor of Landon today!
This Gould Syndrome Awareness Day weekend (April 11-12), your gift goes directly toward travel stipends for researchers and families attending the 3rd International COL4A1/A2 Conference in Boston this May.
Donate now and double your impact: Check if your workplace provides donation matching to maximize your contribution.
About The Gould Syndrome Foundation
Gould Syndrome is a rare genetic disorder affecting multiple systems, often involving cerebral vasculature defects, ocular dysgenesis, myopathy, and kidney abnormalities. Emerging features include brain and lung abnormalities. It is diagnosed through a COL4A1 or COL4A2 genetic variant. If inherited, the carrier parent may be mildly affected or unaffected, potentially due to mosaicism, where mutation presence varies across cells.
Donations received support The Gould Syndrome Foundation’s mission to empower and improve the lives of affected individuals and their families through awareness, advocacy, education, and supporting research. We rely on our Scientific and Medical Advisory Board to help guide our decisions when funding research, and will review all applications for research funding using a system of peer review. Our Scientific and Medical Advisory Board is an international group of researchers and doctors expert in all aspects of Gould Syndrome who volunteer their skills to guide our foundation's decision making. Your donation makes a difference in learning more about this rare disease and possible treatments.
If you prefer to donate by check, you may mail it to the following address, and note that your donation is in honor or in memory of a specific individual.
The Gould Syndrome Foundation
25 Pinecrest Avenue
Peabody, MA 01960
The Gould Syndrome Foundation is an official entity recognized by the federal government and a 501(c)(3) non-profit charitable organization. Your donation is tax deductible. Tax ID: 33-1807591