LATEST NEWS
AxD RESEARCHEnd AxD funds gene therapy research for Alexander disease
April 2, 2023
The foundation End AxD, a nonprofit dedicated to research, treatment and a cure for Alexander disease, has donated $74,000 to UMass Chan Medical School to explore a gene therapy treatment for the fatal neurological disease.
End AxD is excited to announce two new partnerships with leading universities.
February 23, 2023
A major gift was presented to the lab of Dr. Mel Feany M.D, Ph.D., a professor of Pathology at Harvard Medical School and Brigham and Women's Hospital. Funds from the gift will catalyze efforts to identify new approaches to treating Alexander Disease.End AxD has also chosen to partner with the UMass Chan Medical School and its Horae Gene Therapy Center to design a ...
Governor Lee got to meet some really special kids!
October 9, 2022
Governor Lee got to meet some really special kids as he signed legislation making April 7th End Alexander Disease Day in Tennessee!! Grayson Ledbetter, Cameron Copeland, Chayse Andrews and Meris White were rock stars!!! Thank you to our sponsors Rep. Esther Helton, and Senator Bo Watson! Let’s get other states to do the same. Let us know if you can help! ...
Promising treatment for Alexander Disease moves from rat model to human clinical trial.
September 17, 2022
https://www.waisman.wisc.edu/2021/11/17/promising-treatment-for-alexander-disease-moves-from-rat-model-to-human-clinical-trials/
New Community Statement on the Alexander disease program from Ionis
October 19, 2021
Please see the latest community statement on the Alexander disease program from Ionis. End Alexander Disease is here to ensure that the voices of Alexander disease patients and families are heard. Caring for your child is your number one priority, so please feel free to let me be your advocate if you have questions or concerns. Leigh@endaxd.orgDownload Alexander ...
Clinical Trials for Alexander Disease have Begun!
August 3, 2021
We are thrilled that Ionis has initiated a clinical trial in Alexander disease! The first site has posted on clinicaltrials.gov and Ionis has released a community statement. Patients and families have waited a long time for this day! While this is an incredibly exciting time, we want to encourage our community members to be cognizant of international travel ...
Welcome to End AxD
September 1, 2020
We're excited to launch End AxD as a place for us to merge our individual efforts into one group project to End Alexander Disease. End AxD was founded by Patient Advocates in partnership with Doctors and Researchers to provide you with the most up to date, accurate information, and push forward research so that we can get effective treatments and an eventual cure for ...
Waisman Center: Alexander Disease
August 19, 2020
Alexander disease, a leukodystrophy, is a progressive and usually fatal neurological disorder in which the destruction of white matter in the brain is accompanied by the formation of abnormal deposits known as Rosenthal fibers. Rosenthal fibers are aggregations of protein that occur in astrocytes, which are cells that support the brain. These protein collections are ...