Once in awhile, an issue comes along of such gravity, that it demands our utmost attention and immediate call to arms, and for me this one hits close to home. MarkdownMom asks that you read the following post and act as quickly as possible:
30,000 people die from influenza in the U.S. and they call it a pandemic. 30,000 people die from ALS and they call it an orphan disease.
Feeling good about the ALS Bucket Challenge? Well, you should—-and you shouldn’t. That historic amount raised for ALS is greatly needed money for research, but it doesn’t go into treatment. Patients must fight everyday to live, struggling each day to hang on, waiting, hoping… For some eating, speaking, even breathing on your own becomes a luxury. Quality medical care, necessary to remain alive while the cure or any significant treatment goes through the scientific hoops of clinical trials, becomes impossible to find, to coordinate, and in the case of Cheryl Sweeney, downright dangerous (see previous post).
The disease progresses very fast at times and patients soon find that they are in a medical subclass, too advanced to participate in potential life-saving clinical trials—-for them, it is denied. Cheryl Sweeney, like other ALS patients, finds herself in such a situation. The struggle plays upon her mind, the cost of finding qualified care, the problems of scheduling care 24 hours around-the-clock, the stress and toll on family members, feelings of dependency, and the limitations of her body—all creating a sense of despair that can be seen in her eyes and in the limited conveyance of words by her on a computer.
She is one of many in the U.S. and around the world in this position. Some are doing better, like Stephen Hawking whose celebrity makes available resources that most with this disease do not have access to; some are doing worse in countries where medical resources and equipment are more limited than in the U.S.
But what good are advanced and sophisticated medical equipment, breakthroughs in medical research, and the most talented physicians and researchers if you don’t have access to them?
However, Cheryl does have something as powerful—a loving family and loyal friends who won’t give up on her and other ALS patients facing this predicament . And now there is real hope, there is the means for inclusion and extension of a breakthrough medical treatment for her and other ALS late stage patients from stem cell treatment with NurOwn(tm) by Brainstorm Cell Therapeutics. However, because she and others are late stage ALS patients, this is not an option. So close and, yet so far.
But, through the social media, you can help them to gain expanded access to this life-saving treatment. You can support her and others like her by signing the petition to include them in this new treatment at change.org. When could you with just a click, taking only a second, possibly save so many lives?