The Susan Mast ALS Foundation is everything I wish my family had when we were struggling to understand what was to come. They give ALS patients and their families much needed support, guidance and resources that they so desperately need in one of the darkest times in their lives. There is currently no cure for ALS, but there is help! The Susan Mast ALS Foundation is there for patients and families when they need it most. They provide Support Groups, Respite, Meals, Caregiver Training and so much more.
I won't bore you with the growing mountain of statistics that come along with the subject of ALS. I'll leave the numbers to the numbers people. I'd rather tell you a story of my favorite person in the world, my big brother Joe.
I am the youngest in a family of seven boys. Yes you read that right, try as they might, my parents didn't have any girls. People would say to my mother “two more and you could have a baseball team”. Families like ours were fairly common in our little town during the 1960's and 70's but almost unheard of these days. As you might imagine, it was a madhouse of scraped knees, black eyes and screams of “Mom! He hit me!” closely followed by retorts of “He started it!”. You get the idea.
Fast forward to 1995 when Joe was married with kids, and I was in my mid twenties, working all day and partying all night. My dad called a family meeting. This never happened so we all knew it wasn't going to be good news. My dad told us he had something called ALS. He was surrounded with blank stares because we had any idea what it was. And when he said it was terminal, you could hear a pin drop in the room.
Fast forward to the Fall of 2011. I had a family of my own now. I lived in Grand Rapids and Joe was living in Detroit at the time. He called to say he wanted to meet because he had something to tell me that couldn't be said over the phone. When we did meet up, he told me his symptoms. He lost 20 lbs over the prior few months. He showed me how his right arm was half the size of his left, and said he believed he had ALS. After going through it with my father, I wanted nothing to do with that idea! It took a few months, but in January 2102 he got the diagnosis. He was gone by the end of that summer. I was devastated.
Lightning has struck twice in the same place. My relationship with my father was strained, so when he died I felt robbed because it took his illness to get us to workout our differences. I felt robbed again when I lost my brother in his mid 40s.
Now, please take a moment and picture in your mind, the person you love the most in this world. Now imagine you are by their side and have just been given a diagnosis of a rare and terminal disease of which you know nothing about. Then imagine that the doctor you're talking with knows little more than you do. And it shows on their face. They can't offer you even the slightest hope of a treatment or a cure. The only thing worse than hearing this earth-shattering news and the helpless feelings that come along with it, is not having anyone to help you take the next step. The steps to understanding and coping. The steps of acceptance and holding on to your sanity. What do you do? Where do you turn? Who do you talk to?
That is what it was like for me and my family when when my father was diagnosed with ALS and again when my brother Joe was diagnosed with ALS. I can't describe in words the feelings of loss my family had. We had no one to turn to who could help us make sense of anything. And that is why I am excited about the Susan Mast ALS Foundation.
I am asking you to reach deep in your pockets and give until it hurts. I will also tell you, the perceived pain of giving more than you think you can afford to give will fade fast and the rewards of giving far out-way the pain. Whether you give $10 or $10,000, your financial support of the Susan Mast ALS Foundation is truly priceless. The value they provide to our community in West Michigan is immeasurable. I hope you will get to know the people who make up the foundation and support their important work, not only now but throughout the year. Sadly the need is not getting any smaller, it only grows. By giving your financial support to the Susan Mast ALS Foundation you can be the hope for families and patients that feel hopeless.
Joe and I shared countless hours together and countless cups of coffee. He even had his own coffee shop for a while. I started Joe's Brother Coffee to honor my brother's memory and make it my life's mission to make an impact in the ALS community. Our mission at Joe's Brother Coffee is to promote awareness of ALS and raise funds for research of the disease. We donate a portion of every sale in support of our mission. I was excited to discover the Susan Mast ALS Foundation. And once I saw the immediate positive impact they were having on our local community and had to jump on board! So recently, Joe's Brother Coffee and the Susan Mast ALS Foundation have partnered up to create a custom coffee blend called Respite Roast. It's a delicious blend of Central and South American coffees and 100% of the profits from every bag sold directly support the Susan Mast ALS Foundation. Buying Respite Roast is a great way for you to show your support throughout the year.