Matching gifts up to $50,000 from November 28th to December 31st
November 28th, is Giving Tuesday. Giving Tuesday is a day to harness generosity and transform lives. This year, will you join our relentless quest to find a cure for Okur-Chung Neurodevelopmental Syndrome (OCNDS)?
OCNDS is a rare genetic syndrome marked by life-altering symptoms. For affected families, every day is a challenge. Together, we can change the course of this rare syndrome and pave the way for a brighter future. We are raising $50,000 to accelerate our research program to improve the lives of those affected by OCNDS.
In 2023, our foundation has undergone a remarkable transformation compared to our beginnings in 2018, and it's all thanks to your unwavering support. With your support, we have achieved incredible milestones:
1. Global Connection: We've connected with over 210 OCNDS families worldwide, creating a diverse community spanning 32 countries and speaking 19 languages.
2. Research Hub: We established a dedicated OCNDS research program at the Translational Genomics Research Institute (TGEN) in Arizona.
3. Global Collaboration: More than 10 labs globally are actively working on OCNDS relevant projects, with over 25 researchers participating in our quarterly research roundtable to foster collaboration and accelerate discoveries.
4. Financial Commitment: We've committed over $850,000 to OCNDS research, reinforcing our dedication to finding a cure.
5. Scientific Publications: The number of OCNDS publications has risen from only 1 in 2016 to an impressive 27 in 2023.
6. Research Toolbox: We built a research toolbox, including essential tools such as animal models and induced pluripotent stem cells, to enhance our understanding of disease mechanisms and inform therapeutic approaches.
7. Therapeutics Partnership: We formed an innovative partnership with Unravel Biosciences, a therapeutics company that has identified several already approved FDA drugs from pharmacy shelves that may treat some of the symptoms associated with OCNDS.
8. Global Community Building: Our monthly OCNDS Family Zoom calls provide community and knowledge sharing, empowering families worldwide. Our partner, Wordly AI, provides live-caption translation for our Zoom calls, allowing families from across the globe to participate in their native language, ensuring global inclusivity.
9. Community-Driven OCNDS Research Participation: A crucial step forward, 109 individuals with OCNDS have enrolled in the Simons Searchlight OCNDS Natural History Study. In collaboration with Simons Searchlight, this study is pivotal for understanding OCNDS progression and informing treatment strategies through comprehensive insights.
10. Dynamic Leadership: We hired Dr. Gabrielle Rushing as our inaugural Science Program Director, enhancing our research program's capabilities and bolstering our commitment to those affected by OCNDS.
These achievements underscore the power of collective action. On this Giving Tuesday, we humbly request your support. Your generosity serves as a promise of hope, a pledge to unity, and a shining beacon for OCNDS families.
Joan and Charlie Davis, compassionate champions of our cause, are generously matching gifts up to $50,000 from November 28th to December 31st. Seize this opportunity to double your impact! By moving "Forward Together," we can achieve the extraordinary.