Wendy lives in the mountains of north central Pennsylvania. She attended Mansfield University of PA where she earned a BSE-EE and MEd-LIT. She’s a certified educator and a lifelong learner. Wendy is currently raising her 2-1/2 year-old granddaughter that was diagnosed with Gould Syndrome at 18 months old, who has various health issues due to her condition. She feels honored to be a part of The Foundation and is eager for more people to learn about this rare condition and help those struggling with its symptoms.

Rena is from Vancouver, Canada, and mom of Austen and Amelia. Amelia was diagnosed with COL4A1 at 10 months old. Rena has over 10 years experience working in the health insurance field in Canada and has been part of the Gould Syndrome community since June 2023. She is an outspoken member of the community and a strong advocate for COL4A1/2 education, community, and research.

Brittney earned her bachelor’s degree in Community Health, with a minor in Psychology, from Whitworth University. With a personal connection to Gould Syndrome, Brittney is passionate about utilizing her education and experiences to make a meaningful impact. She has a background in helping lead projects addressing health disparities and is excited to continue her advocacy work by serving the Gould Syndrome community.

Tim lives in the Boston area. He was diagnosed with Gould Syndrome (COL4A1) in early 2018 and since then has received expert care from the team at Mass General Hospital. His involvement with The Gould Syndrome Foundation, beginning in March of 2024, stems from a desire for everyone who suffers from the syndrome to receive such care, to know they are not alone, and have hope for a better understanding and treatment of the syndrome in the future.

Stacey is from Charleston, South Carolina and has over 15 years of experience in marketing, communications, and event planning. She previously served as a marketing communications specialist as well as corporate secretary for an insurance services company. Her daughter was diagnosed with Gould Syndrome when she was six months old after undergoing genetic testing. Stacey is honored to be involved in the Foundation’s work and looks forward to supporting the organization’s mission to empower and improve the lives of affected individuals and their families through awareness, advocacy, education, and research.

Lacey is from Dallas, Texas but currently lives in the Pacific Northwest. She graduated with her Bachelors degree and has years of experience in the medical field helping treat and educate patients, as well as providing support to special needs children within the public school system. As a parent to a COL4A1 affected child, Lacey spearheaded Gould Talks in 2022 to give newly diagnosed families and individuals another resource for education and support.

“Receiving a COL4A1/A2 diagnosis can feel so overwhelming. I want to help our community know there are resources, education, and people available to help you on this journey.”

Monica grew up in San Francisco, CA and currently resides in the Bay Area. She received her Bachelor's degree in Community and Regional Development, Master's degree in Education, and teaching credential from UC Davis. Monica was an educator for six years before becoming a parent. After a family member was diagnosed with Gould Syndrome, Monica began volunteering with The Foundation to advocate for this community and support ongoing research.