Lori’s Walk to Defeat ALS

Walk to Defeat ALS… because you can

Thank you so much, Lime, for letting me share information about ALS, the Walk to Defeat ALS and to spread awareness of the urgency to find treatments and a cure. I really appreciate all the good that you do for social causes and how generous you and your readers are with your time and money. I’m here to ask you to open your hearts once more for a disease that has struck my family.

ALS (Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s disease) is a neuromuscular disease. There is no cure at this time, or even any treatment. Basically, ALS robs a person of everything except their cognitive abilities. The muscles begin to weaken, as nerves don’t fire correctly. You slowly begin to 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. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. This crippling disease can strike anyone. Presently there is no known cause of the disease, though support is bringing researchers closer to an answer. In the meantime, it costs an average of $200,000 a year to provide the care ALS patients need.

Part of the problem is that there is no test for ALS. It’s a diagnosis that’s only made after ruling everything else out. So it frequently takes up to 2 years to diagnose the correct disease. That’s 2 years of disease progression before you’ve even gotten a diagnosis. You may have seen this video feature of New Orleans Saints player Steve Gleason during the SuperBowl this year:

Here’s my own ALS story:
My sister-in-law Sue was diagnosed in October 2010 with ALS. The diagnosis took 18 months, which is sadly not unusual. In the 1 ½ years since her diagnosis (3 years into the disease), she is now completely dependent. She is in a wheelchair, and requires assistance around the clock. The saving grace for my brother and sister-in-law has been our local chapter of the ALS Association. The ALS Association serves several purposes. First, they are there to educate ALS patients, families, and the public about this disease. But more importantly, they are 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.

The average life expectancy of an ALS patient ranges from 2 to 5 years from the time of diagnosis.  We are now at the 1 ½ -year mark from diagnosis. My brother and sister-in-law and my 2 nieces are coping with the help of family and friends, but I know that there is quickly going to come a day when we no longer have Sue with us. Though she is enrolled in some clinical trials, and we remain hopeful for a treatment to slow progression or a cure. However, it’s not likely that Sue will benefit directly from the ongoing research. Where she does benefit 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 an answer 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. They are fighting so valiantly, and staying hopeful and optimistic.

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.

I know that money is 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 so many government budget cuts, subsidized medical research is often the first thing to go. With your help though, we can make a tangible difference in the lives of people 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.

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/
Donations also are used to fund important research – the ALS Association has the most active research program in the world, and over the past year many new discoveries have been made. One of the current studies is focusing on the increased incidence of ALS in our armed forces. Here are some other important breakthroughs – among which is discovering a gene that is common in familial ALS (when it runs in families).

(9/21/2011) New Genetic Mutation Identified: Most Common Cause of FTD and ALS, Accounting for as Much as One Third of All Familial ALS

(8/23/2011) Northwestern researchers report breakthrough in ALS research

0 thoughts on “Lori’s Walk to Defeat ALS

  1. Pingback: Winners, “Update,” & A Flash Giveaway « Limecello

  2. jeannemiro

    Limecello –

    Sorry I hadn’t had a chance to stop by earlier but I just received your latest post and ALS victims deserve no demand our respect and support. Unfortunately ALS isn’t recognized by the media does not educate the public about ALS as much as other life changing diseases and too many people are aware of the effects it has not only on the person disabled but their entire families as well.

    Kudos to Lori for bringing this to your readers on a personal level and you for supporting her cause!

  3. Pingback: Walk to Defeat ALS… because you can (Lori’s Post) « Limecello

  4. Pingback: Why Lori made me cry (It’s worthwhile reading. I promise.) « International Heat

Join the conversation!

This site uses Akismet to reduce spam. Learn how your comment data is processed.