Blazen’s Story
Blazen was diagnosed with Gould Syndrome before birth 5 years ago. I know his case is severe: hospital stays, one correction after the next. I think my head is spinning; I’m lost and I know I’m not alone.
My heart breaks and triumphs all the the time in knowing my God has blessed me with a beautiful, happy, strong warrior who just keeps trying to beat everything thrown at him. Children truly are the most cherished gifts from God here to show us to slow down and love every moment. Parenting children with Gould Syndrome is a lot, and it’s scary, but they teach us so much.
Make a gift in honor of Blazen 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