When Sarah Coglianese was diagnosed with ALS, 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 forCNNabout 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.”
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.
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.
Linqia would give anything to help end ALS. That’s why we have been teaming up with 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. We believe in the research efforts of ALS TDI and specifically in AT-1501, a very promising drug that could feasibly and finally change the trajectory of this disease. AT-1501 is on its way to clinical trial, but needs every last penny to advance. And fast.
We partner with ALS TDI through #WhatWouldYouGive, a national awareness and fundraising campaign that challenges healthy people to give up an ability to understand what life with ALS might be like. Last year alone, our company raised $15,000 through this campaign, 87% of which went immediately into the lab at ALS TDI.
So, where do you come in? This year, you will have the unique opportunity to partner with Linqia pro bono and join us in our national #WhatWouldYouGive effort. This is a chance to tell a story that truly matters, and to use your platform as an Influencer to make a tangible difference in the lives of others.
In your posts, you’ll share a message of hope & education around ALS, empowering your audiences to take action i.e. make a donation online and pass the message forward. If you have a personal story or connection with the disease, share it. Be sure to speak to your role as a parent and how that influences your desire to commit to this cause. If you wish to educate your audience on the efforts and advancements of ALS TDI, craft an authentic story that resonates with your audience members, because it means something to you.
The goal this year is to raise$50,000through our collective efforts. And up to$25,000will 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 and we want you in our village!