Press Release

This is a press release I created to help us get our story of struggle out to the media. Please cut and paste the text below and put your own contact information in the Contact: line then send to your local media with a cover letter explaining your own struggle and advocacy activities. With enough synchronous distributed local coverage we can generate national interest. If you can't cut and paste then email me and I will send you a copy. YOU are the story. But together we can create the change we demand. --------(cut and paste below)------------ People with ALS Changing Their Own World Contact: Much like the people in the Middle East, people here at home who are subject to another kind of tyranny are using social media such as Facebook, Twitter and Youtube to organize and spread the word about their condition. These people are known as PALS, or Person(s) with ALS. ALS, commonly known as Lou Gehrig's Disease after the famous baseball player who died from it, is a progressive and incurable deterioration of the nerves controlling voluntary muscle movement. This leaves the person totally paralyzed and eventually unable to even breathe. Because the expected lifespan from diagnosis rarely exceeds five years, the population of living PALS is low and those living aren't able to make themselves into public figures. Until now. With the advent of social media, as well as the technology of mobile computers with eye-tracking input systems and text-to-speech synthesis, PALS are able to compete on an even footing in cyberspace with more physically capable people. Many of these PALS are in serious medical conditions such as near total paralysis and some on mechanical ventilation via tracheotomy. As the astrophysicist and PALS Stephen Hawking said, "My body may be crippled but my mind is free." Unsatisfied with the level of advocacy and awareness generated by organizations with that as their claimed mission, PALS are doing it themselves and placing pressure on those representative organizations to change old operating procedures. Other organizations representing other medical conditions are very vocal and aggressive in public awareness (the foundation of funding and national priority for research) and this new group of PALS demand commensurate action from the organizations representing them. Examples of the new paradigm are: • an emergency Facebook movement to transfer one PALS from an abusive institutional care facility to an entirely new fully automated care facility (which was designed by another PALS who was also the first resident) http://www.govostes.com/blog/?page_id=172 http://www.youtube.com/results?search_query=saling+als+residence+&aq=f • the "Often Awesome" serial documentary of a PALS' life with ALS from diagnosis to current time http://www.youtube.com/results?search_query=often+awesome+&aq=f • various Facebook groups including a direct petition to the ALS Association http://www.facebook.com/pages/Petition-Against-ALSA-National/139603146055424?ref=ts • a movement to draft a Hollywood star as a spokesman https://www.facebook.com/alsspokesman • use of the popular video creation site xtranormal.com to craft and distribute their own Public Service Announcement http://www.youtube.com/watch?v=NgNVvHbIIiI Facebook as a corporation is aware of this group of PALS and recently invited a few to its Palo Alto, CA, headquarters to take part in a documentary being aired in March, 2011, on MTV. The documentary will be about how various groups have used Facebook to effect change.