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What is Amazon Smile?

Amazon Smile is a program from Amazon that allows for a percentage of your qualifying purchases to be donated to a charity of your choice. The percentage donated may be small, but can add up quickly if you are a heavy Amazon user. This is an easy way for you to contribute to your favorite charity without really thinking about it.

Setup for picking a charity is done through the top banner and very simple. The list of available charities is quite large and most likely contains a charity you know and already donate to. In addition to large national and global charities there are also quite a large number of small local charities who can be chosen from.

What Charity do I Support?

I have my Amazon Smile account set up to donate to the EB Research Partnership. The EB Research Partnership is one of the largest charities working to find treatments and a cure for Epidermolysis Bullosa(EB) which is a terrible genetic skin disease. It only effects a very small percentage of the population, but has a large impact on that group. The symptoms of EB can range from mild in the EB Simplex variety all the way to lethal at a young age in one of the Junctional EB varieties.

Why do I Support the EB Research Partnership?

The simple answer is my son is the reason.

My son Lucas was born with JEB, which is the more severe version of the three major types. Born March 5th 2019 he was quickly rushed to the NICU with some sections of skin missing. Both my wife and I were concerned as we had no reason to believe his birth would be anything but normal. As luck would have it we had a NICU nurse at our local hospital who had seen a case of EB before and had some idea of how to take care of him. After a day at the local hospital he was moved to Children’s at Scottish Rite. Over a very stressful couple of weeks we learned that he did have JEB and were able to see how easily he would blister.

Despite all that was going on, the pricks, the blisters, the other noises around him, he wasn’t bothered. Someone forgot to tell him that he had a disease that would mean almost constant pain and likely a shortened life. Once we got him home we had to quickly learn how to handle him, being gentle with a baby that just wanted to wiggle.

We had good days where he just wanted to play with toys or crinkle paper. We had bad days where he would have multiple doctor visits. He ended up needing a G-Tube to help with weight gain. Of course that just meant another thing for him to try to play with.

Unfortunately his variant of EB proved fatal and he passed away on December 26th 2019. To say it’s been hard on my wife and I would be an understatement. Despite all the pain we have tried to also spread awareness about EB and try to help encourage people to donate for a cure. At his funeral my wife gave a powerful speech on how EB did not win, and she is right.

EB only wins when it takes a life if we let it. If we don’t try to further the search for a cure. If we forget those it has impacted. As long as we continue to help Lucas will always be remembered.

Other Charity Recommendations

If you decide not to choose the EB Research Partnership as your charity of choice I have a few more recommendations of charities that I also donate to and are listed in Amazon Smile.

AmazoncharityEB
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