Happy holidays to the Alexander Disease Community!

As we celebrate the holidays, we are grateful for the blessings of community. 2023 has been a tough year for so many, but we remain grateful and hopeful. Hopeful for a treatment, hopeful for a cure, grateful for the clinical trial, and for all the Drs. and researchers who have dedicated their lives to find answers to Alexander Disease.

Our mission, “to be a catalyst for research and development of a treatment, and eventual cure, of Alexander Disease, and to help those with this disease get the care they need,” motivates us every day. That is why End AxD is excited to share some of the things we are doing to support Alexander disease research and the needs of our families.

Last year, End AxD provided a gift to the laboratory of Dr. Mel Feany, M.D., Ph.D., at Harvard Medical School and Brigham and Women’s Hospital. Dr. Feany’s work focused on identifying novel approaches to treating AxD and expanding the pipeline of the next generation of motivated and qualified scientists searching for a cure for Alexander disease. Dr. Feany just shared that the investment that End AxD made helped her lab obtain a small grant from the National Institutes of Health to support the ongoing work on Alexander disease! We are grateful for the work Dr. Feany, and her team are doing!

End AxD is also partnering with the UMass Chan Medical School and its Horae Gene Therapy Center to design a gene therapy construct to target AxD. Leading this project are Guangping Gao, PhD, and Jun Xie, PhD. Dr. Gao is the director of the Horae Gene Therapy Center and is one of the world’s leading experts in the field of AAV gene therapy. The goal is to develop a gene therapy that can be used in human clinical trials. Year 2 of this research continues at UMass thanks to the generous support of an AxD family.

A third investment has been made to the Lautenberg Center for Immunology and Cancer Research at The Hebrew University - Hadassah Medical School. Dr. David Naor is working to test a small peptide to decrease GFAP aggregation and show its therapeutic effect in Alexander Disease (AxD) experiments.

We believe in an “all of the above” strategy for finding answers! But we need your help now more than ever to make these promising investments, as well as to continue to care for AxD patients and families with needed support, birthday wishes, celebrations of important milestones, and encouragement through difficult times.

There are several ways to contribute including sending a check made out to End AxD to PO Box 827, Ooltewah, TN. 37363, Venmo @EndAxD, or through the donate tab in the menu at the top of your screen.

 We are so thankful for your faithful and generous support in the past and we humbly ask that you consider End AxD in your year-end giving.

Best,

Leigh McClure

Executive Director at End Alexander Disease