I am digging the Guthy-Jackson Charitable Foundation! When their teenage daughter was diagnosed with neuromyelitis optica (NMO), which is a rare, demyelinating, autoimmune disease that can be life-threatening, parents Victoria Jackson and Bill Guthy were beside themselves with fear and worry.
They didn’t know anything about NMO, but began a lifelong quest to educate themselves in order to help their daughter—and help others. At the time, NMO hadn’t really broken onto the rare disease scene as far as the general public was concerned. Heck, not even doctors knew much about it—they still don’t EVEN TODAY!
So Guthy and Jackson created their foundation to not only help build awareness, but to help promote funding and research in the clinical field. And that’s not all, they began an groundbreaking effort to bring together experts in demyelinating disease which included scientists and doctors and also pharmaceutical and biotechnology developers. Their goal? To help make medical and scientific advances in this disease in hopes that an effective treatment would result. And with some luck, I think they will be successful. I know I’m going to do my part to help spread awareness about this sinister disease that is often mistaken for multiple sclerosis.
The thing is that NMO can be fatal because it can affect the heart and lungs to fail. It’s common for people to suffer cardiac arrest—even at a young age. Typically before there’s cardiac involvement, people experience vision problems, some people lose vision in one or both eyes as NMO affects the optic nerve. But the disease can also attack the limbs causing numbness, and tingling. Some people permanently lose the ability to walk or even take care of their own personal hygiene. Like MS, attacks can come on suddenly, or they can be gradual. But unlike MS, with each relapse, there is no remitting, no going back to baseline, or if it doesn’t it’s unusual.
One of the cool things that the Guthy-Jackson Foundation is doing is offering a variety of free Apps to help people try to manage their health. There are nutritional apps, exercise, and even a braille app. It’s amazing—and it’s free. So go to the site and check it out!