Today is #GlobalAccessibilityAwarenessDay. May your videos have captions, your images have alt text and your forms have labels and instructions. Check the contrast of your colour pairings and for the love of all that is holy, make it work with a keyboard. #GAAD
It is estimated that PMD affects 1 in 200,000 to 1 in 500,000 live births. There is no cure. Clinicians & researchers have dedicated their careers to working on research in order to facilitate understanding the disease pathogenesis of specific treatments. https://t.co/5DhujEiXAO
We are very excited to learn of @DicernaPharma's new technology to deliver medicines to cell types in the brain including oligodendrocytes. Since PMD affects oligodendrocytes in the brain, we're eager to follow Dicerna's continued research in this area. https://t.co/mJ4aiaFKyX
I've been sharing this amazing picture on Zoom class visits — kids remote learning during a polio outbreak in the 1940s. Schools shut and teachers read lessons on the RADIO. We're facing such challenges today, but as I tell kids, we've faced them in the past and gotten through.
Thank you, @TheAmandaGorman, for “being proud, and being loud, in front of a crowd”! I’m so glad you didn’t get to be Nola in Broadway... So glad you see the light and you are the light!
@Cure4Ellie Hey, Ellie: I LOVE your banner! Do you mind if I use it? Our daughter Ana has a Leukodystrophy with a tough name too (Pelizaeus-Merzbacher-Like Disease or PMLD) and we are trying to help creating awareness. Keep being awesome!
Leukodystrophies are rare genetic disorders that affect the growth or maintenance of myelin, the insulation of nerve cells. These disorders are progressive, meaning that they tend to worsen throughout the life of the patient.
September is Leukodystrophy Awareness Month.
Our Ana is affected by a Leukodystrophy (Pelizaeus-Merzbacher-Like Disease) and we witness daily her heroic efforts to overcome difficulties.