The Gould Syndrome Foundation

The Gould Syndrome Foundation The Gould Syndrome Foundation provides this information for the benefit of the community. If you identify as younger than 13, your post will be removed.

The Gould Syndrome Foundation is dedicated to empowering and improving the lives of individuals and their families affected by COL4A1/A2 gene mutations through awareness, advocacy, education, and supporting research. The Gould Syndrome Foundation is dedicated to empowering and improving the lives of affected individuals and their families through awareness, advocacy, education, and supporting rese

arch. The Gould Syndrome Foundation is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder. The Gould Syndrome Foundation is a 501 (c)(3) non-profit recognized by the IRS. The Gould Syndrome Foundation encourages users to participate on this page, however advises users do not share private health information, including but not limited to one's full name(s), address, phone number, email address, or private health information. This is a public Facebook group page and all posts are visible to the general public. Facebook requires that users must be 13 years of age or older to participate on this page. All posts that contain offensive remarks, profanity, spam or illegal content are not allowed and will be removed. We reserve the right to remove any post that is deemed unintelligible or unnecessary. We also reserve the right to remove or block a user's access to post on our page.

Boston, we will not forget you. The 3rd International COL4A1/A2 Conference was everything we hoped it would be and more....
06/04/2026

Boston, we will not forget you. The 3rd International COL4A1/A2 Conference was everything we hoped it would be and more. The recap is live including photo galleries, video streaming, and more. Link in bio.

Give a warm welcome to this week's community member spotlight - Naum and Sava!If you'd like to share your child or yours...
05/27/2026

Give a warm welcome to this week's community member spotlight - Naum and Sava!

If you'd like to share your child or yourself to be featured, please visit our "Warriors" page under the Community tab on our website. When we share our stories, we raise awareness, inspire others, and build the understanding our community needs.

Say hello to Azriella, this week's community member spotlight!If you'd like to share your child or yourself to be featur...
05/19/2026

Say hello to Azriella, this week's community member spotlight!

If you'd like to share your child or yourself to be featured, please visit our "Warriors" page under the Community tab on our website. When we share our stories, we raise awareness, inspire others, and build the understanding our community needs.

Today is the day, Boston.Doors open at 8:30am for breakfast and registration at the Wyndham Boston Beacon Hill. Opening ...
05/15/2026

Today is the day, Boston.

Doors open at 8:30am for breakfast and registration at the Wyndham Boston Beacon Hill. Opening remarks from Lacey Korstvedt and Brittney Davison kick off at 9:00am, followed by an introduction to Gould Syndrome from Dr. Doug Gould of UCSF, and our first session of the day with Blyth Lord of Courageous Parents Network on mental health for caregivers.

If you are joining us in person, we cannot wait to welcome you. If you are following along from home, stay tuned here for updates throughout the day.

We have waited a long time for this weekend. Let's go.

This conference does not happen without this community.The researchers who said yes. The families who registered, some t...
05/14/2026

This conference does not happen without this community.

The researchers who said yes. The families who registered, some traveling across the country and across the world to be in that room. The donors who made it possible. The volunteers who have given their time, energy, and heart to make sure every detail is right.

The 3rd International COL4A1-A2 Conference is just two days away, and we are feeling the weight of that in the best possible way.

Thank you for being part of this. We will see you in Boston!

More details and virtual attendance registration can be found on our website: www.gouldsyndromefoundation.org

There's still time to support this event with a donation by visiting the link in our bio or simply text 'GIVE4GS' to 50155!

05/12/2026

If you are joining us in person this week, we have something for you! 🦢

Our amazing volunteers have put together an exclusive Boston Guest Guide for conference attendees. Inside you will find our favorite spots in Beacon Hill and beyond, from coffee and breakfast before sessions to dinner recommendations for the evenings. Consider it our love letter to the city hosting this community. All recommendations have ADA accessibility notes so you can plan your visit and enjoy Boston to the fullest.

The guide is available exclusively through the registrant resource hub. If you have not accessed it yet, find the link in our bio and use your attendee password to get in.
Boston is almost here. We cannot wait to welcome you!

More details and virtual attendance registration can be found through our website, link in bio.

There’s still time to support this event with a donation by visiting the link in our bio or simply text ‘GIVE4GS’ to 50155!

The conference is almost here.If you haven't registered yet, there's still time to join us virtually for the 3rd Interna...
05/11/2026

The conference is almost here.

If you haven't registered yet, there's still time to join us virtually for the 3rd International COL4A1/A2 Conference, May 15 and 16. Families, clinicians, and researchers from around the world will be coming together to share the latest in Gould Syndrome research, clinical care, and community.

Registration is free and open to all. Link in bio.

05/09/2026

Research Presentation Day will cover disease models, genetic tools, and clinical outcomes, with presentations from some of the most dedicated minds working in COL4A1/COL4A2 research today. Every study in that room represents a step toward better answers for families living with this disease.

We are proud to host this conversation. We hope you will follow along.

More details and virtual attendance registration can be found on our website: www.gouldsyndromefoundation.org

You can help support this event with a donation by visiting the link in our bio or simply text ‘GIVE4GS’ to 50155!

Caregiving is one of the hardest things a person can do. It asks everything of you, often quietly and without much ackno...
05/08/2026

Caregiving is one of the hardest things a person can do. It asks everything of you, often quietly and without much acknowledgment.

On May 15, Blyth Lord of will lead a session on mental health for caregivers as part of Family Connect Day in Boston. It is one of the sessions we are most looking forward to, because this community deserves space to talk about what caregiving actually feels like.

If you are attending, we hope you will be in the room for this one. More details and virtual attendance registration can be found on our website: www.gouldsyndromefoundation.org

You can help support this event with a donation by visiting the link in our bio or simply text ‘GIVE4GS’ to 50155!

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Boston, MA

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