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The Glut1 Deficiency Foundation Awarded $450,000 Grant from the Chan Zuckerberg Initiative's Rare As One Network
One of 30 Patient-Led Rare Disease Organizations Chosen
OWINGSVILLE, KY. (Feb. 3, 2020) — The Glut1 Deficiency Foundation has been selected to participate in the Chan Zuckerberg Initiative’s Rare As One Project, which will provide $450,000 in funding and multiple avenues of support to help the Foundation establish a collaborative research network. This support will help the global Glut1 Deficiency community of patients, families, clinicians, and researchers work together to advance progress towards better understanding and better treatments.
The Glut1 Deficiency Foundation is one of 30 patient-led rare disease organizations selected for funding by the Chan Zuckerberg Initiative (CZI), which is providing a total of $13.5 million through its Rare As One Project to support and lift up the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases. The Glut1 Deficiency Foundation’s participation in the Rare As One Network will lead to better engagement of patients, clinicians, and researchers, and will help provide the insights, tools, and knowledge needed to identify gaps, set meaningful and impactful goals, and prioritize resources to help achieve a cure. Collaboration among all stakeholders will be the driving force to make progress happen.
“We are tremendously grateful for this opportunity, which we believe will bring help and hope to our patients in boundless ways,” said Glenna Steele, Co-Founder and Executive Director of the Glut1 Deficiency Foundation. “We look forward to learning, sharing, and growing alongside other rare disease organizations as each of us works to put the pieces in place to accelerate progress in our disease communities.”
Rare disease is anything but rare: as many as 7,000 rare diseases affect 400 million people worldwide. The vast majority of these diseases are not well known or understood, and fewer than five percent have any FDA-approved therapy. The knowledge and learnings of patients suffering from these diseases are key to driving breakthroughs in research and treatment, but a lack of funding and infrastructure to support such patient-led research is holding that progress back.
“No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders,” said Priscilla Chan, Co-Founder & Co-CEO of CZI. “We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians.”
CZI is providing these patient organizations with funding, training, community mentorship, and capacity-building services to assist them in establishing a network of researchers and clinicians, convening their community, and developing a research agenda. The hope is that these organizations will share feedback with and learn from one another, and identify how to best address the most pressing needs across a spectrum of rare diseases.
“We’re excited to welcome this group of grantees — led by patients and caregivers with diverse backgrounds, perspectives, and expertise — to work together and learn together,” said Tania Simoncelli, CZI Science Policy Director and Rare As One Project lead. “We hope the support, training, and mentorship provided through CZI’s program will be transformative for these organizations and serve as a model that can be catalytic for other groups battling rare diseases.”
About the Glut1 Deficiency Foundation
The Glut1 Deficiency Foundation is a parent-led patient advocacy organization for Glucose Transporter Type 1 Deficiency Syndrome, or Glut1 Deficiency - a rare disease that impairs brain metabolism and causes a wide range of neurological symptoms. The G1DF, a nonprofit founded in 2011 and based in Owingsville, Kentucky, serves as a global leader in working to improve the lives of those in the Glut1 Deficiency community through our mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research. Please visit www.G1DFoundation.org for more information.
About the Chan Zuckerberg Initiative
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.
The Glut1 Deficiency Foundation is one of 30 patient-led rare disease organizations selected for funding by the Chan Zuckerberg Initiative (CZI), which is providing a total of $13.5 million through its Rare As One Project to support and lift up the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases. The Glut1 Deficiency Foundation’s participation in the Rare As One Network will lead to better engagement of patients, clinicians, and researchers, and will help provide the insights, tools, and knowledge needed to identify gaps, set meaningful and impactful goals, and prioritize resources to help achieve a cure. Collaboration among all stakeholders will be the driving force to make progress happen.
“We are tremendously grateful for this opportunity, which we believe will bring help and hope to our patients in boundless ways,” said Glenna Steele, Co-Founder and Executive Director of the Glut1 Deficiency Foundation. “We look forward to learning, sharing, and growing alongside other rare disease organizations as each of us works to put the pieces in place to accelerate progress in our disease communities.”
Rare disease is anything but rare: as many as 7,000 rare diseases affect 400 million people worldwide. The vast majority of these diseases are not well known or understood, and fewer than five percent have any FDA-approved therapy. The knowledge and learnings of patients suffering from these diseases are key to driving breakthroughs in research and treatment, but a lack of funding and infrastructure to support such patient-led research is holding that progress back.
“No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders,” said Priscilla Chan, Co-Founder & Co-CEO of CZI. “We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians.”
CZI is providing these patient organizations with funding, training, community mentorship, and capacity-building services to assist them in establishing a network of researchers and clinicians, convening their community, and developing a research agenda. The hope is that these organizations will share feedback with and learn from one another, and identify how to best address the most pressing needs across a spectrum of rare diseases.
“We’re excited to welcome this group of grantees — led by patients and caregivers with diverse backgrounds, perspectives, and expertise — to work together and learn together,” said Tania Simoncelli, CZI Science Policy Director and Rare As One Project lead. “We hope the support, training, and mentorship provided through CZI’s program will be transformative for these organizations and serve as a model that can be catalytic for other groups battling rare diseases.”
About the Glut1 Deficiency Foundation
The Glut1 Deficiency Foundation is a parent-led patient advocacy organization for Glucose Transporter Type 1 Deficiency Syndrome, or Glut1 Deficiency - a rare disease that impairs brain metabolism and causes a wide range of neurological symptoms. The G1DF, a nonprofit founded in 2011 and based in Owingsville, Kentucky, serves as a global leader in working to improve the lives of those in the Glut1 Deficiency community through our mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research. Please visit www.G1DFoundation.org for more information.
About the Chan Zuckerberg Initiative
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.
Help us build our collaborative research network - join the G1DF Professional or Family Network
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