Ok, so the title of this post is a little harsh. But it’s meant to be. Amyloidosis? It can kiss my ass. It takes the lives of many, but in this case, I’m talking about someone I never met.
Amy is one of my co-workers here at Wiley. A nicer, harder working person would be harder to find. When I heard that her husband Paul was ill, I wanted to do whatever I could, however small that was. I had my daughter’s class write get well cards and pictures for him to decorate his hospital walls while he waited for what they hoped would be a life-saving transplant.
Alas, that was not to be, and Amy and her two sons suffered an unimaginable loss in the days before Christmas in 2008. Christmas. Seriously? Could you be any crueller, Amyloidosis? It all seemed unreal, but for those who loved this man, it was very real.
Amy wanted to channel her grief into a way to help others, so she decided to put together a team of people to participate in the NYC Triathalon, with all participants raising money to support the Amyloidosis Foundation. I wanted to help, but let’s be honest – I don’t have the time required to get into tri-shape. Pear shape, maybe. But not tri-shape.
I was joking around with a coworker about the tri. He said that he could run, I could bike, and all I needed was to find someone to do the swimming. I laughed, heartily, at the thought. Heck, we both laughed. Hard.
Another co-worker overheard and said we could indeed form a team for the tri and that her husband could do the swimming leg. We looked at each other and realized, yes, we could and should do this.
Unfortunately, work commitments have taken me out of the tri. Damn shame, as I was really looking forward to biking those miles uphill on the Henry Hudson and West Side. However, I found a replacement and our team lives on.
I hope you will consider contributing to our team. But first, some info about this important cause that you’ve never heard of.
Amyloidosis is a rare blood disorder that took Paul’s life in 2008 when he was only 41 years old. Despite an array of symptoms and multiple in-depth work ups by various doctors, Paul went undiagnosed for a year. An otherwise healthy guy with two young kids was getting sicker and sicker and no doctors seemed to know the reason. When his diagnosis finally came, the most aggressive treatment was not enough. This is an all too common tale for people who have Amyloidosis, a disease with a funny name that is anything but funny and has no known cause or cure.
The Amyloidosis Foundation exists to ensure that there are fewer and fewer stories like Paul’s. It focuses on a number of important initiatives including:
–raising awareness of the disease among doctors and others in the medical community to ensure earlier diagnosis
–funding research that will lead to a broader range of treatment options
–supporting Amyloidosis patients and their families with timely and accurate information about this allusive condition
I’m calling on people to help my team reach their fundraising goal. Here’s how to do it:
1. Go to this link and click on the link to begin the donation process.
2. select “This donation is made in dedication to an individual.”
3. Check “In Honor Of”
4. in the “Dedication Name” field, enter “Mayhew-Brassuer-Snider/Paul’s Posse”
Your donation is tax deductible, of course. If you have questions about the form or the foundation’s donation process, you can contact me or Mary O’Donnell, president of the foundation, directly at email@example.com.
Let’s give Amyloidosis the kick in the teeth that it deserves.
You can read more about Paul and Amy at her blog. Amy’s an amazing woman and one of my heroes. I dare you to not be touched by her story and be motivated to wipe out this killer disease.