Friday, January 07, 2011

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.


  1. It always hurts my heart to see posts like this, especially when it concerns people that I hold close to my heart. I will be buying that C by Peter Gusmano, it's not much but I'm glad that 100% of the proceeds will be going toward Project ALS.

    My thoughts and prayers are with you and your family. I hope that they find a way to get your niece to BU or a better solution that suits them all.

    Big hugs sweetie!

  2. There really are no adequate words, but please know that many good wishes and prayers are being sent your way. I will think of you all, looking for ways to support ALS causes. The CD is a good place to start. Let us know about your walk, too.

  3. I am so very sorry to hear about your sister in law. Thank you for sharing your story with us. My thoughts and good wishes are with you and your family.

    Thank you for bringing ALS to our attention and giving us opportunities to help.

  4. Oh Lori, I can't tell you how sorry I am to hear this news about your sister in law and your brother's family. It hurts. My prayers and best wishes for all of them.

    I purchased the CD through iTunes. Thank you for making us aware.

  5. Thanks, you guys. Your support means so much to me and my family.

    For those of you who chose to get the CD, I really hope you enjoy it!

  6. Oh Lori, I'm so sad to hear about your sister in law. My prayers are with your family.

  7. Lori, my heart aches for your sister-in-law, her family, and everyone else in her circle. I hope everyone finds the support they need and deserve. I commend you on being so diligent about keeping on top of the much needed research and funding for ALS and other diseases. You are truly an inspiration.

  8. What terrible news for your family Lori. Best wishes for your fund raising and here's hoping that there'll be a miracle and/or breakthrough in time for your family.

  9. Lori, sorry to hear about your family. I work for a non-profit group, The Young Faces of ALS (YFALS). Our goal is to raise awareness that ALS is not an 'older peoples' disease- young people get it and young people- your nieces- are affected by it. We welcome anyone but your nieces may want to join to look for support during this journey.

    We are planning a Corn Hole event in many US cities on June 18, 2011.we welcome all! Our fund raising efforts support ALS-TDI, a non-profit ALS research lab in Cambridge. Please join our Facebook page and/or contact me at for more information. Thank you and prayers to your family.


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