No Ice Buckets Needed: Just Give & Help Fund Research for MANY Illnesses!!

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While I’m all into the spirit of giving, I think that ALS has gotten so much face time, LOTS of donations, and SO MANY new pledgers… that I’m ready to see a new charity be funded!! Now, you’re already probably freaking out, thinking that I’m saying this because I’m tired of seeing these ice bucket challenges. Not true. I love these things, and watching the hundreds of friends who have done it soak themselves with one bucket of ice cold water! Some even omitted the ice, or did it in a pool of warm water!! I’ve seen more people share this challenge, than take part in their own family members or friends current life situations. *Insert head shake*

The point of doing the ice bucket challenge is to give you an idea of what it feels like for an ALS sufferer when their muscles seize and freeze. The trouble I have is that ALS is NOT the only unfunded, not donated to, understudied illness or disease that causes this! ALS is NOT the only death sentence disease! That said, I don’t feel that one bucket of ice water really does it, either, especially for those who aren’t even doing it for that reason! Sure, it’s all in good fun, and is helping to raise LOTS of money (over $57 million, at last check) for research. But what about all of the other diseases and illnesses that take the lives of humans every day? Scleroderma. Lupus. Rheumatoid diseases. Those are three, but there are more than three hundred other little known ailments that need funding, too!!

ALS stole the life of my Grandma a few years back. Joan wasn’t legally my Grandma, but for all intents and purposes filled the role beautifully. At first, ALS stole her speech, which for this lady, was more than difficult. She was the woman who could always make you laugh, have a snide joke and a wink to send you on your way. She kept the warm smile plastered on my Grandpa’s face for so long, that watching him take care of her in the last years seemed only natural. Hard, but the progression of life. In her last years, she couldn’t do anything for herself. Not use the bathroom, eat, sit up— nothing. ALS stole her body, and the quick wit of her mind…but she was still in there. Trapped. Unable to be herself, and unable to control the feelings that having a disease completely take over your body has. We all watched, helpless, and began our donations to ALS research then. For us, it’s not about ice buckets. It’s not a fad, or the latest internet challenge. It’s the missing member of our family stolen by this horrid disease.

Scleroderma (and many of its close relatives) does the same thing, but in longer more drawn out stages. The scar tissue and hardening tissue builds inside our bodies, completely hardening organ systems and rendering them useless. For me, it’s my respiratory and pulmonary system. For my friends, it’s their muscles disappearing, and in some, the hardening and malfunction of their reproductive organs. But, we all have Scleroderma. It’s unfunded. Unsupported. Unknown, for the most part. Procedures for this are still not even covered by insurance….not even in the “marketplace.” Doctors don’t have the knowledge to fix it, only make the symptoms less severe. Our muscles are hardening, and growing unusable, too. Just the other day I ruptured a blood vessel in my thumb from simply bending it too fast… I can’t tell you what it feels like to know that the only thing that will eventually keep you alive is a lung transplant. Progressive diseases are scary, hard to talk about, and in most cases…all have the same end. Death.

The question then becomes, will my illness get the funds it needs to be studied enough to even create a drug that will help ease the side effects? A drug that will help “turn off” the disease progression? A medicine that will not cause 8424867 other things to happen? Will we get enough face-time to spread the word about this disease? To ignite an interest? To make ANY progress for hope?

I’m thrilled for those ALS sufferers, and their family members that so much has been donated, and now so much more research can be done. I’m so hopeful that with this money, a wonder-drug will come out of somewhere, and give the relief, and help add time to the lives of those it’s stealing from. At the same time I’m hopeful for ALS, I’m also holding out for all these other unknown diseases, and those that affect me, and my friends. Don’t let an ice bucket challenge be the reason you’re charitable—because it’s goofy fun. Just be charitable. Give. Help. Support. Be present. All the time.

I will NOT be participating in the ice bucket challenge because doing so will set off an internal flare, and my own illnesses. Yes, intense cold throws me into flares….and believe me, I deal with it enough without extra ice or cold water. I can’t regulate my body temperate normally, so heat and cold are also a huge issue for me. My donations to place like ALS, and to the Scleroderma Foundation will never stop. In fact, certain proceeds from the sales of my upcoming cook book will be going to the Scleroderma Foundation, and to Riley Children’s Hospital. No tricks, no ice buckets, no “making” or “forcing” or “roping” friends into it.

Just Give. Try it.