May 1, 2010

May is ALS Awareness Month

Posted in ALS Awareness at 6:06 pm by jensalsjourney

May is ALS Awareness Month. Probably the only people who are aware of this, though, are people whose lives are already affected by the disease.

ALS is not like other diseases that get lots of publicity (and dollars), because it is relatively rare. Not only that, but most people with ALS don’t live all that long, so it’s hard to maintain a critical mass of support. Everyone has heard of cancer and MS and even Parkinson’s disease. Many people don’t have any idea what ALS is. And yet I can’t think of many other conditions that cause more suffering and anguish.

I try to stay positive. I share my story, not because I want sympathy or pity, but so that others will learn about ALS and support research that will help doctors understand what causes this disease and find a way to help us live longer. I really believe the answer is out there, maybe not too far in the future. It may be too late for people who have ALS today. But the more we raise awareness now, the sooner the breakthrough will come.



  1. Sharon said,

    Bless you for being such an eloquent voice for the cause!

  2. Trish said,

    May your voice be heard loud and clear all around the world.

  3. Steve said,

    Hello there! You are such a great writer and your own best editor, thats a for sure. Thank you for sharing your journey as I attempt to understand what you and Chris are dealing with.

    Love always!

  4. Rev. Matthew said,

    Jen, you are incredible, and by being willing to share your story as you move through this passage you are leaving behind a rallying point for all of us who know and love you. I check into the blog and know I am going to cry and laugh; I can only hope I have the courage you have when I face trials in my life. Here’s to being able to see the joy no matter what! Blessings, Matthew

  5. Karen Buckley (Dunmire) said,

    I got the link to your blog from Elizabeth Mcmillan. We all went to Harborfields together way back when… what incredible strength you have. Your blog brought me to tears when I think about what trivial things we worry about. I love the way you look at things… I wish you and your family nothing but the best and my prayers are with you.

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