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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 firstname.lastname@example.org if you can be of any assistance.
– Shannon Moore
One of the mods here in the NASATweetup Alumni forum
There are currently 6 humans living and working aboard the International Space Station (ISS). Astronauts and cosmonauts typically serve aboard ISS for four to six months, although two crew members (NASA astronaut Scott Kelly and Russian cosmonaut Mikhail Kornienko) spent 340 days on the orbital laboratory beginning in March 2015. From 1986 to 2000, several Russian cosmonauts spent at least 365 days in space aboard the Russian space station, Mir.
Astronauts Need Good Teeth
Four months is sufficient time for a minor dental problem to turn into a medical emergency, so the most important part of astronauts’ oral hygiene is the same as it is here on Earth–prevention. [Read more…]
According to the Centers for Disease Control and Prevention (CDC), 42% of children ages 2 to 11 have had cavities in their baby teeth and 21% of children ages 6 to 11 have had cavities in permanent teeth.
Would you like more help establishing good oral hygiene habits in your children, grandchildren, nieces or nephews? Purchase a copy of the entertaining and delightfully-illustrated new children’s book by Karen Schleeweis, “Pim, Pam, Pom and Mucho Mouse.” The book, published by Syncretic Press, is based on recommendations from the American Dental Association (ADA) and presented in a fun, easy-to-read manner that is sure to help 2- to 8-year-old children improve their oral hygiene habits. [Read more…]