Give the Gift of Hope
The Gould Syndrome Foundation has been invited to help fund the next step in Gould Syndrome research: a clinical research coordinator (CRC).
Once funded, the CRC will spend two years helping advance natural history research, which looks at how Gould Syndrome affects people and changes over time.
The natural history studies so many families have joined are already teaching us a lot. As more families enroll and researchers around the world work on potential treatments, it's become clear what it will take to keep this research moving: dedicated support.
125+
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What the CRC will do
Gather and analyze more medical records
Collect and study biosamples, such as blood
Collect, organize and analyze data to the standards regulators require, guided by experienced researchers and clinicians
Help produce at least one published study (expected)
Why it matters
For care today. When families ask what to expect with Gould Syndrome, the honest answer is often "we don't know yet." Each new finding from natural history research helps clinicians understand the many ways Gould Syndrome can affect people, so they can better care for each patient.
For treatments tomorrow. When families ask about treatments, the answer is "not yet." Before any potential treatment can be approved, it has to be tested in clinical trials, and the data behind those trials must meet standards set by the FDA and other regulators. Without this data, Gould Syndrome is at real risk of being left out of promising research.
The CRC will help make sure that when a treatment is ready to be tested, our community will be ready too. Funding a CRC is a strategic investment for every family living with Gould Syndrome.
How you can help
All that's needed now is funding. The researchers and clinicians are in place, and the CRC is trained and ready to begin. Once the work is underway, you'll see updates on what your gift makes possible.
Help us reach $60,000 by December 31. Hope starts with you.
More ways to help
Double your gift. Many employers match their employees' gifts. Ask your HR team, or look up your employer: [matching gift link]
Join a natural history study. You can join both studies. They're free and can be done remotely.
Organize a walk-a-thon. Turn your steps into support for research.
Share the page. Send this page to 5 people who care about your family.
Start a family fundraising page. Add your story and a photo, and invite friends and family to give. [fundraising page link]
Give in honor of someone. A meaningful holiday gift for a teacher, therapist, grandparent or friend.
Questions
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It's research that looks at how Gould Syndrome affects people and how it changes over time. It helps clinicians care for patients today, and it's the foundation future clinical trials will be built on.
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A CRC supports the day-to-day work of research: gathering and organizing medical records, collecting and studying biosamples, and making sure data meets the standards regulators require.
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No. This research is building knowledge and trial-ready data for everyone living with Gould Syndrome.
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Yes. Once the work is underway, we'll share updates with our community.
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[Add your standard tax-deductibility line and EIN.]
thank you
To everyone who has enrolled in a natural history study or supported our community: thank you. If you haven't enrolled yet, it's not too late.