People start dying from coronavirus and the world’s governments start pumping money into research to find a cure.
I’m like, “hey, we’ve been dying since before Lou Gehrig and we haven’t seen spectacular sums of money thrown in to save us. Does the fact that ALS isn’t contagious make our lives any less valuable."
And then there is all the talk about the financial impact this is having on individuals and families. Funny, I don’t remember any talk of assistance for families bankrupted by ALS, the sudden loss of one or both incomes, combined with mounting medical bills.
Finally, there are the complaints about quarantine on social media. I’m like, “Oh yeah? You feel cooped up in your house after a few weeks? Try being stuck inside your body…forever.”
On these occasions, I found myself muttering what may be the most pointless phrase in the English language: “It’s just not FAIR!”
Well, no. Life isn’t fair, as every single family affected by ALS knows all too well.
After that visceral moment passes, I get a grip. The rising death toll and economic shutdown of people’s livelihoods are tragedies I don’t wish on anyone.
This COVID-19/quarantine situation has reinforced that WE, the ALS community, are the only ones who can end the disease that caused so much pain in our lives. Many corporate sponsors have to pull back, people who are able to give are focused on other (worthy) causes like healthcare workers and helping those in need. And then there’s the government funding that will never be enough, pharma companies that consider ALS too “rare,” and amazing windfalls like the ice bucket challenge that only catch fire once in a blue moon.
It is up to us in this moment to sustain the ALS research we have all worked so hard to fund.
So many traditional fundraisers that ALS TDI counts on have been canceled this spring. I love the creative virtual fundraisers that have popped up: bingo, trivia, a talent show, Gamers vs. ALS, all the many facets of the My-State Trek. They are fun, raise some money, and – most importantly – bring our community together, actually in new ways.
I have also been inspired by the heartfelt ALS Awareness Month posts that I’ve seen on social media this May. We are reminding the world that yes, we know suffering, we are living through the pain, and yet, we are still standing and fighting for a cure for a horrendous disease that will not have a vaccine in 12-18 months.
Even if you are not in a position to give financially right now, I ask you to participate in these virtual events that are uniting our ALS community. Or take some time to post your thoughts and experiences with ALS as a fundraiser for ALS TDI. It will get a lot of reads while we’re all home!
Stay safe, my friends,
Andrea Lytle Peet
Andrea Lytle Peet was diagnosed with ALS in May 2014 at the age of 33. She lives with her incredible husband and two rambunctious cats in Raleigh, NC where she has dedicated her remaining time to fundraising for ALS research through the Team Drea Foundation and enjoying her life to the fullest.