“The first flash of color always excites me as much as the first frail, courageous bloom of spring. This is, in a sense, my season–sometimes warm and, when the wind blows an alert, sometimes cold. But there is a clarity about September. On clear days, the sun seems brighter, the sky more blue, the white clouds take on marvelous shapes; the moon is a wonderful apparition, rising gold, cooling to silver; and the stars are so big. The September storms–the hurricane warnings far away, the sudden gales, the downpour of rain that we have so badly needed here for so long–are exhilarating, and there’s a promise that what September starts, October will carry on, catching the torch flung into her hand.”
― Faith Baldwin,
Ahhh, yes. The end of September is drawing near. The month’s end brings the release of Summer and the beginnings of Fall. It also brings the annual ALS Association’s: Walk to Defeat ALS® for people “like me”.
I’ve participated in this walk for the last 5 years. The summarized story? My mother was diagnosed with this disease and two years later, passed from this disease. If this seems fast to you, it is not. This disease is a fast killer and is a fact among facts when it comes to being diagnosed.
When Mom was diagnosed, ALS was a mystery to me. I had never heard of it! Her diagnosis spun my life around and I chose to take this very out of control situation into my own hands by immediately delving into learning all I could. Through my Google searches, I stumbled across this walk and soon learned firsthand that this walk and this association – is life changing and unifying.
The walk occurs once a year at the various chapters around the nation. Thousands join together on this day to fight the same goal – a world without ALS. While I may be biased, it is my belief that the Oregon and SW Washington Chapter is by far the greatest of all the national chapters. At the time of Mom’s diagnosis, there was no chapter (or minimal existence of one anyways) in Hawaii and when I found that something concrete existed here in Portland, oh my goodness, it was a God send. The staff at the association reached out to me and met me for coffee. They introduced me to specialized therapists who helped those inflicted cope with the after effects and more importantly, they reached out their hand and pulled me into a group and club I never wanted to be a part of, but am still so grateful to have found. It’s this hands on approach to support and care that I will eternally remember, acknowledge and praise.
From that first walk on, Team Happy Feet was created. The minute I started “walking”, was the minute I started being supported. My team, comprised of my Oregon friends – my true life line here in Oregon – is also comprised of those who support my fundraising efforts financially across the oceans from their respective homes. Each year my team meets – rain or shine – to remember, honor and celebrate life. These beautiful friends of mine joined together and became one. I have an army, and this army I have, I’m telling you, we aren’t going to ever let this disease win.
Team Happy Feet – September 2015
I sent my fundraising letter out a little later than usual this year. Okay, okay, a lot later. While I usually allow myself at least 3 months to fundraise, I was only able to start fundraising within the last week or two. Wedding season had my hands tied up just a little bit! (Understatement of the year). While I haven’t been able to fundraise as I normally do, I have still re-registered my team, gathered my troops and we are set to have around 25-30 happy strolling team members join us this Sunday, September 25th.
Another part of fundraising means reaching out with a fundraising request letter. I struggle each year to find the right words to capture the attention of people. It never fails that as the month of September approaches, I battle the emotional weight of this disease, the trying bittersweet efforts that still bring no cure and the fact that it reminds me of what I lost way too soon. Some years I find my outgoing letter is wrought with tears while the next year it’s hopeful, encouraging and empowering. Such is life and such is death. There’s beauty in tragedy if we search hard enough to find it.
I tried to keep the letter this year simple and covered in facts. I’m sharing a brief part of it with you here and hope to provide some insight into why awareness is not only NEEDED but how YOU are needed to help as well.
- Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.
- Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year. As many as 30,000 Americans may currently be affected by ALS. Annually, ALS is responsible for two deaths per 100,000 people.
- The average life expectancy of a person with ALS is two to five years from time of diagnosis. With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis. About 20 percent live five years or more, and up to ten percent will survive more than ten years.
- ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. ALS can strike anyone. Every single American is threatened by this disease.
That’s that – and yet it’s not. It’s so much more than this is it. NOW is the time to help, and I have the ways you can do this.
If you are in Portland: Find us, Join us, Walk with us! The more the merrier! We would love for you to share in our annual Sunday journey. While the tone can be somber in theory, the day is always filled with hope and joy and celebration of how lucky we are to live this thing called life. Register by clicking here and selecting: Join Kimberly’s Team.
If you aren’t able to walk and would instead like to donate: Also go to the same link and then click: Donate to Kimberly’s Team.
We have a long way to go. But I’m not giving up. And I can promise you I won’t give up until a cure is found.
About The ALS Association
The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.