ALS, music, and hope

This is a very personal post for me. My sister-in-law has been sick for the past couple years, and she and my brother have been visiting doctors non-stop trying to get a diagnosis. She was finally definitively diagnosed a couple months ago with ALS (amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease), which is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. It is progressive and always fatal.

My brother and his wife have been together since the early 80s. Married in 1989. Neither of them have really had any other boyfriend or girlfriend. Only each other. We used to joke that if they came to dinner, you only needed one chair, because they couldn’t keep their hands off each other. Obviously, over the years, that has mellowed, but they are still very much in love. I worry for my brother.

They have two beautiful daughters – one is a junior in college who just got back from a semester abroad in London. The other is a high school senior, who has her heart set on going to BU. Now that SIL is no longer working, I hope that they can work something out so that she can still go. And yet, I hate that if she goes, she won’t be able to spend the last bits of true quality time that she can with her mother. My heart breaks for all of them, and for our entire family. We have no way of knowing how fast the disease will progress for SIL, but there is no doubt that it will. She is already in a wheelchair, because she doesn’t have the strength in her feet and ankles to support her body.

I don’t know what decisions they will make as they move forward. Whatever they decide will be the best they can for their family.

As most of you know, I am a huge supporter of the ACS and cancer research. Each year, I nag beg ask you to support my Relay for Life walk. This year, and moving forward, I am going to branch out and find different ways to support the ALS as well as the ACS. There is a ton of research going on for both diseases, and much of it surrounds stem cell research. Since the ruling that reversed President Obama’s 2009 executive order that widened the opportunities for federal funding, there is even a greater need for donations and funding of research for all diseases, but especially those that are fatal where research could make such a difference literally between life and death. I definitely don’t want to turn this into a discussion of the rights or wrongs of embryonic stem cell research – just making a point that funds are needed in order to conduct research – of any kind. There are several organizations out there conducting research for a cure for ALS; one is the ALS Association, another is Project ALS. Both are doing wonderful work not only on the research front, but in providing support to ALS patients and their families.

This morning on the radio, I heard an ad for a CD from an artist who is donating 100% of the proceeds to Project ALS. This is such a simple and easy way to support ALS research and get something completely enjoyable out of it. The artist is Peter Gusmano, and his website is Guitar for a Cure. From there, you can read his story, or link off and purchase his CD, A Flickering Light, which is really great. The CD is available at Amazon and iTunes, among other places. Music Therapy is such a great thing, and I hope that ALS patients, their families, or really anyone who hears this beautiful CD can derive even more pleasure knowing that every dollar spent on that music is going to work to save the lives of ALS patients.

I promise not to flood you with requests for money, but will definitely be participating in the Walk to Defeat ALS and looking for other similar opportunities so that I can support funding the ALS cure research. I hope that, if you don't have your own personal pet cause, that you'll consider looking into supporting a cure for ALS or cancer.