1. ALS is a nuerological disease that is no respecter of persons. The cause is not known and it attacks people from late teens to the elderly. ALS attacks the voluntary muscles of the body,ie
the throat, tongue, jaw, arms, hands, legs, feet, trunk and diaphram. The nerves to the muscles die and no longer send signals for the muscles to move.
All organs, the brain, heart, etc. are left unaffected, hence the patient is trapped in a body will full senses intact. They can see, hear, feel, taste and think but they cannot move.
2. 30000 people in the United States have als and 5000 new cases are diagnosed each year.
3. One person dies every 90 minutes from complications caused by ALS. The most common cause of death is slowly smothering due to the disease crippling the diaphram muscles.
4. The cost to care for one als patient can run as high as 200,000 dollars a year. That figure would include 24/7 care by qualified people. Many ALS patients choose to die to keep from burdening their loved ones with the enormous cost.
5. A wheelchair for an ALS patient can easily cost $20,000+. I personally have not found any that cheap. ALS patients need custom fitted "top end" wheelchairs as they spend many hours a day in the chair. The typical wheelchair will last five years.
6. ALS patients typically live less than five years after diagnosis. Some have lived much longer by choosing to use a ventilator to breath for them, but most choose not to use a vent for personal or monetary reasons.
2. Donate to the ALS Association. If you live in Kentucky, Donate to the ALSA of Kentucky.
Your money will help people of this state more if you do. All donations are tax deductable
and the ALSA is registered with the states and federal government as a "not for profit"
charity.
(Please be aware that there are people who claim to be raising money for all different kinds of charities and they have no affiliation with the charity.. Do not, ever, give cash to any charity. A check or money order made out to the specific charity is fine but do not make it out to an individual.)
3. If you give to the United Way through payroll deduction, there is an option where you can
choose the charity your money goes to. The ALS Association is the only "not for profit"
charity that deals exclusivly with helping als patients and funding als research. It's administration costs are under 8% compared to some charity with much higher administration costs. .A very small percentage goes to fund raising. The rest goes to programs to help als patients. The ALS Association supports special ALS clinics staffed by
professionals who know what we need. They also keep the loaner closet for people to borrow
medical equipment. The goal for the ALSA now is to focus on raising enough money to help
with respite care, something that is badly needed in the United State.
4. Volunteer with your area's ALS Association. If you can't find the one in your area, email
me at bryan_osburn@yahoo.com and I will help you.
5. Get involved in your community. ALS is not the only disease that people get. If you know
someone who is seriously ill, knock on their door and see if you can help. My neighbors are
such a blessing and help me at every opportunity.
6. Contact your State Representatives in Washington DC and tell them you would like to see
more funding for research into ALS.