As I mentioned in yesterday's blog entry, I have often been asked throughout this campaign "How do you know Sarah?' and "Why are you doing this?"
I answered the former question yesterday. Today, I'll tackle the why.
It didn't take long after learning about ALS through Sarah's diagnosis to better understand just how awful this disease is. There are obviously all the physical challenges that people with ALS have to cope with, with one ability after the next "taken" from them.
As I have been following Sarah's blog throughout the years, I have been learning about what it means to go from being able to do everything and anything, to needing to wake up your spouse in the middle of the night to ask for help moving the covers back over your body. Just one small example of the many aspects of day-to-day life and dignity that are slowly compromised by ALS.
But beyond the physical limitations lies all the emotional toll that ALS takes on not just the individual, but the family and extended family as well. Sarah was a 33 year old mother of a two year old when she was diagnosed. Her daughter pretty much only knows her with ALS.
I answered the former question yesterday. Today, I'll tackle the why.
It didn't take long after learning about ALS through Sarah's diagnosis to better understand just how awful this disease is. There are obviously all the physical challenges that people with ALS have to cope with, with one ability after the next "taken" from them.
As I have been following Sarah's blog throughout the years, I have been learning about what it means to go from being able to do everything and anything, to needing to wake up your spouse in the middle of the night to ask for help moving the covers back over your body. Just one small example of the many aspects of day-to-day life and dignity that are slowly compromised by ALS.
But beyond the physical limitations lies all the emotional toll that ALS takes on not just the individual, but the family and extended family as well. Sarah was a 33 year old mother of a two year old when she was diagnosed. Her daughter pretty much only knows her with ALS.
As a husband and father of two girls of my own, Sarah's ALS makes me angry, sad, and heartbroken. At the same time, her courage, leadership, and fight has inspired me - and an army of friends and family - to want to do whatever I/we can to help make a difference in this fight.
So when Sarah's husband Rob first reached out to friends and family in 2013 for the Napa Valley Ride to Defeat ALS, my family and I jumped all over it. Last year, it was the wildly successful ice bucket challenge. And this year, it's the #whatwouldyougive campaign, spearheaded by Sarah herself.
Back in April, Sarah reached out over the phone to run some of her ideas about the campaign by me. When she mentioned the wheelchair challenge, she said, "I know you'll do it, because you're psycho!" (She was kidding - I hope!)
But she was right in knowing that I would want to do the most extreme challenge to bring to light the impact ALS has on people like Sarah. So I will gladly use a wheelchair for a day if it can bring us that much closer to finding better treatments or a cure for ALS.
Many people have been inspired by Sarah's writings, not just for ALS awareness, but for teaching us how one's perspective can make all the difference in life. So it was very serendipitous when the Executive Director of my daughter's preschool shared this poem that was posted to Facebook today.
It is from something called "The Writer's Circle" and the poem was apparently authored by a 14 year old. So in honor of Sarah's great writings, check out this amazingly creative and thought-provoking poem below. But you must follow the directions to get it right. Read it from top to bottom, and then from bottom to top!
So when Sarah's husband Rob first reached out to friends and family in 2013 for the Napa Valley Ride to Defeat ALS, my family and I jumped all over it. Last year, it was the wildly successful ice bucket challenge. And this year, it's the #whatwouldyougive campaign, spearheaded by Sarah herself.
Back in April, Sarah reached out over the phone to run some of her ideas about the campaign by me. When she mentioned the wheelchair challenge, she said, "I know you'll do it, because you're psycho!" (She was kidding - I hope!)
But she was right in knowing that I would want to do the most extreme challenge to bring to light the impact ALS has on people like Sarah. So I will gladly use a wheelchair for a day if it can bring us that much closer to finding better treatments or a cure for ALS.
Many people have been inspired by Sarah's writings, not just for ALS awareness, but for teaching us how one's perspective can make all the difference in life. So it was very serendipitous when the Executive Director of my daughter's preschool shared this poem that was posted to Facebook today.
It is from something called "The Writer's Circle" and the poem was apparently authored by a 14 year old. So in honor of Sarah's great writings, check out this amazingly creative and thought-provoking poem below. But you must follow the directions to get it right. Read it from top to bottom, and then from bottom to top!