New figure...9.7 million dollars donated to the ALS Association!!! David Muirs story on the news was overwhelming. Every ice bucket challenge Paul sees he thinks they are doing for his daddy and he giggles like a hyena watching it. Earlier in the week I told my mom that it didnt matter to me how much money was raised. It is the fact that when Paul tells someone that his dad died from ALS that there is recognition instead of the blank, confused look that I have received for years when talking about ALS. It is a household word now. Dugan once described ALS as the Jan Brady of diseases. When Dugan was first diagnosed with the disease money was a HUGE problem for us...missed work...medical needs...travel would have put us into bankruptcy. BUT the ALS Association provided us with grants. A plane ticket for Dugan to see his family in Oklahoma, gas money, money for us to move out of our second floor apartment into a larger, handicap accessible first floor apartment so that I no longer had to stand on the opposite side of a closed door every morning at 5:25am and mentally count all 16 metal steps as I listened to Dugans combat boots hit each step. Praying that his left foot wouldnt drop and catch his toe sending him headlong to the ground floor. Times became so tough for the ALS Association due to the economy and an increase in ALS patients that monthly grants became quarterly. I remember Dugan would ask me to send money to them after our finances stabilized to help give gas money to new patients. He would have me give away extra supplies to other ALS patients that did not have the same insurances that he had to provide supplies. We spent the day BEGGING politicians at the capital in Raleigh not to cut 100,000 dollars from the budget that normally goes to help fund the ALS Association. Before this challenge there was a tight knit group of patients, caregivers, and friends that took care of each other...not because nobody cared...because you cant care if you dont know. What people probably dont realize is that when you give to ALSA that it is not only going to research...a large percentage is going for patients quality of life. So they can see their family one more time...so the can repair their car and put gas into it so that they can make it to another appointment...so they can live in a house and be safe. So they can just be...themselves.
Posted on: Fri, 15 Aug 2014 23:26:17 +0000
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