Through our mask donation campaign, we came in touch with Alex and his mother Carol, and learned of Alex’s 10 plus year struggle for diagnosis of a rare and debilitating disease called NEDAMSS (Neurodevelopmental Disorder with Regression, Abnormal Movements, Loss of Speech, and Seizures) or IRF2BPL related disorder. The disease is merciless, slowing robbing Alex of his physical and verbal abilities. Alex needs to be attended to daily by nurses and they require daily supplies of medical and respirator masks in the face of the additional risks posed by COVID.
We were inspired by bravery of Alex in continuing to fight this disease, as well as the unwavering love and dedication of Alex’s family.
The least we could do was to supply the nurses with ViralOff masks to complement their medical grade PPE.
This is an extremely rare disease but deserves more recognition so research can be conducted to discover potential treatment and cures.
Please visit Alex’s website to learn more about Alex’s journey and for information on how to support.
Alex’s family has created 2 non-profits, aiming to raise $30,000 for re-analysis of 140 cold cases of other potential sufferers of this disease and $500,000 for research to improve the lives of IRF2BPL patients and their families.
We wanted to thank Carol for permission to use Alex’s photo for this post.
If you would also like to help but are unable to contribute financially, please share Alex’s story and website with friends, family and your community network.