ALS (amyotrophic lateral sclerosis or Lou Gehrig’s Disease) is one of the worst diseases we know of. In people with ALS, motor neurons deteriorate leading to muscle weakness and paralysis. Every 90 minutes, someone is diagnosed with ALS, and most people live 2-5 years after their first signs of disease. There is currently no treatment or cure. While I have not been personally touched by ALS, I lost my mother to PPMS of which there is no treatment or cure.
As a mom of four, when I read of Sarah’s story, my heart was touched.
Sarah Coglianese was diagnosed with ALS when she was 33; her daughter Scarlett was just two years old. While Scarlett was learning to take her first steps, Sarah was beginning to use a walker—then, a wheelchair.
In an article for CNN about her journey navigating motherhood with ALS, Sarah writes: “At first, I was drowning in all my inability, in all the ways I thought I would fail her as a mom. Then something unexpected started to happen. The things I couldn’t do for her, she started to do for herself. When she was 2, she dressed herself. By age 3, she was opening doors for me and helping with groceries. At 4, she could make a quiche, and these days she folds laundry and cleans her room with only the slightest bit of prodding. Sometimes, she gets a broom and a dustpan and starts sweeping the floor without being asked. If my foot slips off my footrest, she nonchalantly walks over and plops it back in place.”
In 2015, Sarah launched #WhatWouldYouGive, a national campaign that challenges healthy people to give up an ability (e.g. voices, arms, hands, legs), to understand what life with ALS might be like and raise awareness and funding for ALS research. Sarah’s experience with ALS and her journey through motherhood leads her to believe that her disease will ultimately make her daughter stronger, braver, loving and empathetic—something we all hope for our children.
As a mom of four, I can’t help but think about what life would be like if I were touched with ALS. Would I be as graceful as Sarah?
I’m partnering with Linqia and the ALS Therapy Development Institute (ALS TDI)–a non-profit biotech 100% focused on finding a treatment and cure–to build awareness of the disease and raise funds for research. The only way a treatment or cure can be found is through constant research, of which takes a great deal of money. The #WhatWouldYouGive campaign works to raise awareness and fundraising.
Through the #WhatWouldYouGive message, a national awareness and fundraising campaign that challenges healthy people to give up an ability to understand what life with ALS might be like. How difficult would it be for you to give up your voice for even a day? What about the use of your arms? Or the use of your legs?
We often think how difficult something could be on someone, but the truth is, we never really know! Giving up an ability, even for a day doesn’t give us but a small glimpse, but that glimpse can allow us to see just how needed this research is!
Linqia’s goal this year is to raise $50,000 through the collective efforts of the online storytellers. And up to $25,000 will be matched dollar for dollar by an anonymous and very generous donor! Together, we can raise funds to help make ALS a thing of the past! It takes a village to get it done will you join our village?