Dear friends,

Thank you for your past support of the Bow Foundation. The Foundation was established in 2017 with the mission of supporting GNAO1 families, funding research and raising awareness. Since inception, the Foundation has raised more than $250,000 in private funds from donors like you. This letter is intended to summarize how we are investing the Foundation’s resources and highlight upcoming opportunities. Please don’t hesitate to reach out if you have additional questions.

University of Virginia iPSC Project
The Foundation funded an initial research project in the Fall of 2017 with a $100,000 grant to the University of Virginia. Led by Dr. Michael McConnell, the Induced Pluripotent Stem Cell (iPSCs) project converts skin cells into neurons so that doctors can better understand how GNAO1 cells respond to different treatment options. The $100,000 grant has been fully funded and research is well underway.

Michigan State University Mouse Model Project
The Bow Foundation approved its second major research grant this past summer when it agreed to fund two additional mouse models in Dr. Richard Neubig’s lab at Michigan State University. The Foundation awarded Dr. Neubig a $48,000 grant to fund one movement disorder mutation model, and one epilepsy mutation model. Through the study, researchers will gather more information about GNAO1, test existing drugs, and identify possible new treatment options. The Bow Foundation funded the initial portion of Dr. Neubig’s grant this Fall and will fully fund this project in 2019.

American Epilepsy Society Partnership
The Bow Foundation has partnered with the American Epilepsy Society (AES) to support early career funding for a grant specifically targeting GNAO1 related projects. These grant opportunities range from $30,000-$50,000 with the Bow Foundation funding 10-15 percent of the grant’s value. The Bow Foundation has earmarked funds for this future grant.

Patient Registry
In addition to the research grants, the Bow Foundation also reached a major milestone in 2018 by establishing the GNAO1 International Registry. The Registry allows doctors to collect data to continue to learn and study GNAO1-related neurodevelopmental gene mutations. Over 50 families have currently signed up for the registry and almost 40 have completed the initial survey questions. We will continue our recruitment efforts so this number will continue to grow in 2019.

GNAO1 Patient & Family Conference
As we turn to 2019, we are focused on holding the first-ever GNAO1 research clinic and the second GNAO1 medical conference. This joint event will be hosted at Washington University in St. Louis in March. Led by Dr. Amy Viehover, the two-day clinic will allow families to bring their children to be evaluated by a research team and specialist at no cost to the families. On Saturday during the conference, presentations will be made by Dr. McConnell, Dr. Neubig, and other lead researchers and clinicians focusing on GNAO1- related neurodevelopmental gene mutations. The conference will provide an opportunity for GNA01 families from across the globe to participate in research, learn from leading experts and connect with others who have a loved one with GNAO1.

2019 Outlook
We are overwhelmed by the support of all the donors and families since we started the Bow Foundation in 2017. We are proud of the accomplishments we have made over the last 18 months as we work to build a better tomorrow for patients with a GNAO1-related disorder.

We are optimistic that the Foundation will receive additional grant requests for research projects to study GNAO1. However, the continued funding of Dr. Neubig’s grant, coupled with the AES partnership and the March GNAO1 conference will exhaust most of the Foundation’s funds.

The only way we can continue making a difference in the lives of GNAO1 families is through the support of donors like you. Please consider an additional donation to the Bow Foundation in 2019 as we continue our work as a leading advocate for GNAO1 research and awareness. No amount is too small, and every donation helps us make a difference. You can donate by visiting our donate page, or by mailing a check to the Bow Foundation at P.O Box 5612, Charlottesville, VA 22905.

Thank you again for your past support of our mission. We’re looking forward to a big year in 2019, and know that none of this would be possible without support from people like you.

Thank you for believing in our mission!


The Bow Foundation Team

Governing Board
Emily Bell
Alice Fox

Duke Fox

Stephen Bell