After discussing the ice bucket challenge with Forrest Baba the other day, he and I decided that it might be more effectively used to raise awareness if the videos were used to discuss the disease itself, so that is what we decided to do. Thank you, Forrest, for nominating me for the ice bucket challenge in an effort to raise funding and awareness about this disease. I nominate Moy Lin, Ashlyn Evans, and Dylan Wagenseller. You guys have 24 hours to respond, and I challenge you all to also take an extra step in helping to educate your friends about the disease. Ive posted a list of facts below, feel free to repost it and include some facts in your video to help inform your peers about this disease and the importance of funding research #ALS #icebucketchallenge #ALSicebucketchallenge Read about David Atkinson, who contracted ALS in 1991: baar/atkinson.htm 1. It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually. 2. Approximately 5,600 people in the U.S. are diagnosed with ALS each year. 3. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time. 4. More than half of all patients live more than three years after diagnosis. 5. About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. 6. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed. 7. ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries. 8. The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows. alsa.org/about-als/facts-you-should-know.html 9. There can be significant costs for medical care, equipment and home health caregiving later in the disease. alsa.org/about-als/facts-you-should-know.html 10. It is important to be knowledgeable about your health plan coverage and other programs for which your may be eligible, including SSA, Medicare, Medical and Veteran Affairs benefits.(all facts above come from alsa.org/about-als/facts-you-should-know.html) 11. Most people who develop ALS are between the ages of 40 and 75, with the majority after age 60, although it can occur at a younger age. alscenter.org/living_with_als/facts_statistics.html 12. Most surveys hold that ALS is more common in men than women, though that gap may be closing. alscenter.org/living_with_als/facts_statistics.html 13. The incidence of ALS is five times higher than Huntington’s disease and about half that of multiple sclerosis. alscenter.org/living_with_als/facts_statistics.html 14. While there’s no cure, riluzole therapy improves ALS survival for typical patients by a short period of time, around four to six months. alscenter.org/living_with_als/facts_statistics.html 15. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons. ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm 16. The onset of ALS may be so subtle that the symptoms are overlooked. ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm 17. The earliest symptoms may include fasciculations, cramps, tight and stiff muscles (spasticity), muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing. ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm 18. Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm 19. No one test can provide a definitive diagnosis of ALS, although the presence of upper and lower motor neuron signs is strongly suggestive. ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm 20. Instead, the diagnosis of ALS is primarily based on the symptoms and signs the physician observes in the patient and a series of tests to rule out other diseases. ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm 21. The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others. ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm 22. Future research may show that many factors, including a genetic predisposition, are involved in the development of ALS. (WHICH IS WHY FUNDING RESEARCH IS SO IMPORTANT!) Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals have increasing problems with moving, swallowing, and speaking or forming words. Eventually people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms.this means it is always a fatal prognosis brainfacts.org/diseases-disorders/diseases-a-to-z-from-ninds/als-amyotrophic-lateral-sclerosis/ 24. Only about 10 percent of those individuals with ALS survive for 10 or more years brainfacts.org/diseases-disorders/diseases-a-to-z-from-ninds/als-amyotrophic-lateral-sclerosis/ 25. Familial causes comprise only about 5% of ALS cases and the cause of the remaining sporadic cases is unknown. brainfacts.org/diseases-disorders/diseases-a-to-z-from-ninds/als-amyotrophic-lateral-sclerosis/ 26. 20% of familial ALS cases are tied to a specific genetic defect https://floridahospital/lou-gehrigs-disease-als/statistics 27. Children of ALS patients have a 50% chance of developing the disease https://floridahospital/lou-gehrigs-disease-als/statistics 28. At this time, medical science can offer no means for preventing Lou Gehrig’s disease (ALS) because the causes are unknown. https://floridahospital/lou-gehrigs-disease-als/statistics 29. Doctors hope that research into molecular and biochemical factors may lead to earlier diagnosis and prevention of ALS. https://floridahospital/lou-gehrigs-disease-als/statistics 30. A common misconception is that only familial ALS is genetic. Actually, both familial and sporadic ALS can stem from genetic causes. mda.org/disease/amyotrophic-lateral-sclerosis/overview#ALS_research 31. Some people who have a diagnosis of sporadic ALS may carry ALS-causing genetic mutations that can be passed on to offspring. mda.org/disease/amyotrophic-lateral-sclerosis/overview#ALS_research 32. About 50 percent of people with ALS develop some degree of cognitive (thinking) or behavioral abnormality. mda.org/disease/amyotrophic-lateral-sclerosis/overview#ALS_research 33. Usually, cognitive and behavioral symptoms in ALS range from mild (such that only close family members may notice a difference) to moderate.mda.org/disease/amyotrophic-lateral-sclerosis/overview#ALS_research
Posted on: Tue, 19 Aug 2014 02:49:41 +0000