Walk to Defeat ALS… because you can (Lori’s Post)

Thank you so much, Lime, for having me here again to talk about a cause near and dear to me. Last night was the StandUp2Cancer benefit, and I find it so touching and heroic how people come out of the woodwork to support such amazing and worthwhile causes. I walked in the ACS Relay for Life for several years to support cancer research. Last year, I changed my focus to ALS, Lou Gehrig’s disease. I’m hoping that you will find it in your hearts to help me out just a little (or a whole freaking lot!). You can donate to my Walk to Defeat ALS here: http://webgw.alsa.org/goto/loris

A lot of people don’t know much, if anything about ALS. It’s a quiet disease, a quiet killer. Back in March, I posted about my sister in law. She was diagnosed with ALS 2 years ago, Lou Gehrig’s disease. It’s a neuromuscular disorder that basically paralyzes your body and eventually is fatal. You slowly lose your ability to walk, talk, swallow, breathe. Yet you remain completely aware of everything going on around you and can still feel pain. It is among the cruelest of diseases. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. Very few people live longer than 7 years after diagnosis. The most famous person with ALS today is the brilliant Stephen Hawking.

Sue’s diagnosis took 18 months, which is sadly not unusual. Since I last posted here about ALS, Sue has lost her voice, because the vocal cords don’t work anymore. She has a tube in her stomach for medications and feeding She can’t take care of her most basic needs alone. The saving grace for my brother and sister-in-law has been our local chapter of the ALS Association. The ALS Association is  there to help families in their local communities with the necessary adjustments – providing affordable equipment such as wheelchairs for patients, contractors to retrofit houses, and social services to give patients and their families the support they need. Our local chapter helped my brother find a handicap-equipped van at an affordable price. They recommended a contractor to them who works with the ALS Association to give a special break in price to ALS patients for retrofitting their home. They support a ton of research as well.

Last time I was here I shared the story of Saints player Steve Gleason, who is battling ALS. Since that time, new research has shown that in addition to other brain related injuries, NFL players are 4 times more likely to die from ALS than the rest of the population.

The average life expectancy of an ALS patient ranges from 2 to 5 years from the time of diagnosis.  We are now at the 2 -year mark. I know that there is quickly going to come a day when we no longer have Sue with us. She’s been my sister for the last 30 years. I hate that this is happening to her and my brother and my nieces. There is no cure for ALS. There is not even any sort of treatment yet. While I hate to say it, it’s not likely that Sue will benefit directly from the ongoing research. Where she doesbenefit immediately is with the support offered to them by the ALS Association and the community of families that reside within it. The ALS community is a tightly-kit one, and it breaks my heart every time my brother tells me that one of their friends has lost their battle.

My greatest hope is that Sue will win her battle, and be here to watch both of her daughters graduate from college, dance at their weddings, and live to see her grandchildren. I pray we find a cure for the millions of people with ALS, but most especially… and selfishly (I admit)… I pray for a cure for Sue, my brother, and my nieces. I am so very proud of Sue and my big brother – they personify grace and dignity and unselfish unconditional love.

Because every donation goes almost exclusively to the local chapters, every gift you make will go directly toward helping my brother and his family. Here is, in part, how donations help:

  • $25 pays for a walking cane that will transform the hope for safety into peace of mind.
  • $60 helps webcast an “Ask the Experts” research summit online for those who are unable to attend in person.
  • $100 enables repairs and maintenance of an augmentative communication device (AAC) from the ALS loan closet.
  • $250 funds one of sixteen monthly support groups that serve people with ALS and their families in my community.
  • $600 supports one day of a multi-disciplinary satellite clinic which serves people with ALS who aren’t able to travel long distances.

Money is so tight for so many of us. I’d really appreciate anything that you could donate to help fight against ALS. Even $5 or $10 helps! With your help, we can make a tangible difference in the lives of families affected by this disease. Last year, your generous donations helped to raise close to $6500 for my team of walkers. My own personal goal is to raise $1500. You have already helped me get partway there.

To donate to my Walk to Defeat ALS: http://webgw.alsa.org/goto/loris

Find out more about ALS and the amazing work being done by the ALS Association here: http://www.alsa.org/

5 thoughts on “Walk to Defeat ALS… because you can (Lori’s Post)

  1. Jess Dee

    Lori, my heart is with you.
    My father died of ALS 14 years ago, and in a nasty joke of nature, my mother died of the same disease last year.
    My family lived with ALS for six years, and we’ll live with the memory of it forever.
    I hope and pray you reach your goal, and urge everyone to donate to this incredibly worthy cause.

    Reply
  2. Lori

    Thank you so much, Jess. I’m so very sorry for your loss. I can’t imagine losing both parents to it. ALS is a terrible, terrible disease that far too few people know about.

    Reply
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