No results can be found
As Rare Disease Day approaches on February 28th, we take a moment to reflect on the incredible progress made in Gould syndrome research over the past year. Connecting with families and advocates in the community has been invaluable, reminding us why this work is so critical and inspiring continued efforts to push forward in search of new treatments and solutions.
Building Momentum: International Collaboration
Last February marked a significant milestone with the first annual European COL4A1-A2 Conference in Rome, organized by the Associazione Famiglie COL4A1-A2. Physicians from France, Italy, and the U.S. gathered to share clinical findings and best practices for patient care. A consensus white paper—a key document to guide clinical teams—is currently under review and will be published soon.
At the conference, Dr. Douglas Gould presented his research, highlighting key discoveries and future directions. For those interested, a short trailer [is available here], with the full 27-minute talk [found here]. The second annual meeting just concluded, and it was even more productive, building on the relationships and momentum from the first. It is expected that this year’s presentations will also be posted online soon.
Advancing Care: The Gould Syndrome Clinic at UCSF
Another major highlight from this past year was the launch of the Gould Syndrome Clinic at UCSF, a dedicated resource for patients and families. The clinic plays a critical role in collecting medical records for a natural history study, a crucial step toward launching future clinical trials. More information can be found on the clinic’s website, and a recent news segment [here] highlights this exciting development.
Strengthening the Community: The Gould Syndrome Foundation
The Gould Syndrome Foundation has undergone a transformation to better serve and advocate for those affected. The foundation continues to grow and take on a larger role in raising awareness and supporting research. If you’re looking for ways to get involved, whether through volunteering or sharing your expertise, they would love to hear from you. Keep an eye on their website for upcoming initiatives.
Philanthropy: A Driving Force Behind Research
As research moves forward, philanthropy remains a critical factor in accelerating progress. The support of organizations like Take Part, which has made significant contributions to Dr. Gould’s lab over the past three months, has been invaluable. A special thanks also goes to the Woods family, whose Lap for Landon fundraisers in honor of their son, Landon, have raised an astounding $50,000 for Gould syndrome research—an incredible achievement!
Join Us in Funding the Future of Gould Syndrome Research
With ongoing federal funding challenges, grassroots support has never been more important. The National Institutes of Health (NIH)—the primary funding source for this research—continues to face freezes and delays, making private contributions vital to sustaining and expanding the work.
To help drive the next phase of discovery, Dr. Gould and his team have launched a $100,000 fundraising campaign between Rare Disease Day (February 28th) and Gould Syndrome Awareness Day (April 12th). These funds will allow the research team to expand and pursue new directions, including exploring gene therapy options.
If you’d like to support this effort, please donate here and select “Gould Syndrome Research” under “Designation.” The All May See Foundation, a 501(c)(3) nonprofit affiliated with the UCSF Department of Ophthalmology, ensures that 100% of your donation goes directly to Dr. Gould’s lab and is fully tax-deductible.
For international supporters, if you encounter any donation issues, please reach out—we’re happy to assist.
Thank You for Your Support
This work would not be possible without the encouragement, engagement, and generosity of families, advocates, and donors. Thank you for standing with Dr. Gould and his team as they continue the fight to understand and treat Gould syndrome. Together, we are making real progress—and with your help, we can do even more.