Press
OUR VISION
We see a world without NGLY1 Deficiency. The innovations we develop along the way will be used to treat and cure other diseases.
OUR VISION
- 2/16/24 Update to As of February 2024, ~130 patients have been confirmed to have NGLY1 Deficiency.
- The Grace Science Foundation has funded over 20 teams in academia and industry to research NGLY1.
- These 20 teams are spread between the United States of America, Canada, Germany, Italy, and Japan.
For more facts and information, please download our press kit.
QUOTES
“We’re not just innovating for innovation’s sake. Our only measure of success is the positive impact we make in patients’ lives.”
-Kristen Wilsey, Co-founder, Grace Science Foundation; mother to child with NGLY1 Deficiency
“Curing NGLY1 Deficiency is only the beginning. The work being done by the Grace Science Foundation is going to help billions.”
-Dr. Shinya Yamanaka, Scientific Advisory Board & Research Team, Grace Science Foundation; Nobel Prize Laureate
“If we had all the time in the world, we’d probably do things differently. But we’re not making the rules or setting the timeline. NGLY1 Deficiency is doing that.”
-Dr. Kevin Lee, Chief Scientific Officer, Grace Science Foundation
RESEARCH FOCUS AREAS
- Animal Models
- Cell & Systems Biology
- Chemistry
- Clinical Studies & Genomics
- Stem Cells
- Therapy Design & Development
For more information on our research and findings, please see our blog.
INDIRECT COSTS
The foundation has a strict policy that it does not cover overhead or infrastructure fees. The Principal Investigator or the Sponsoring Institution must find alternatives to cover these expenses or it must waive them. We are stewards of other people’s money and our war chest is limited. Given the ultra rare characteristics of NGLY1, we need every penny going to research.
CONTACT OUR PRESS TEAMDownload our press kit.
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