This entry, written by Shannon Moore, was originally posted on the NASATweetup Alumni Facebook forum, and is reprinted here to reach a broader audience of geeks who may be able to assist in this cause:
We generally have a policy of keeping this forum dedicated to space and STEM topics, but in this particular instance I think it’s worthy of an exception. For two members of our SpaceTweep family, every day with their son and his extremely rare disease is a “giant leap” and requires launching themselves into the great unknown. They are Jonathan L Lyons and Barbara Forbes-Lyons, and their son has the incredibly rare disease, Kleine Levin Syndrome, that the medical community believes affects 1 in 1 million people in their lifetime. Jonathan created a video to help explain the disease.
Jonathan, Barbara, and other families in the Kleine Levin Syndrome (KLS) support group are trying to understand and fight this incredibly complex and confounding disease, and they are reaching out to the geek community (that’s us!) in the hopes that web developers with PHP skills, can leverage their talents for a good cause. What is desperately needed by these parents, patients, and their physicians is a symptom tracker to gather and analyze user input, more or less in real-time. Jonathan and Barbara work in web development and work with solid open source tools. They hope that building a plug-in for an existing application, like CiviCRM, which already gathers and reports data can save time but any solution is welcome. This disease is so rare that members of the KLS support group can’t answer some of the simplest questions about the disease and hope that quantifying their own experiences can provide some insight. I’m hoping NASATweetup and NASA Social alumni can do what they do best and lead the way, offering up their time and skills to help these folks.
Please contact Jonathan Lyons at email@example.com if you can be of any assistance.
– Shannon Moore
One of the mods here in the NASATweetup Alumni forum