Mom What if it All Changed Tomorrow: Life With ALS #WhatWouldYouGive


It could all change tomorrow

I often write and read about the hardships of being a mom.  We (this applies to stay at home and working moms both) are constantly complaining or venting about all the things we have to do.  Bath time, bedtime, nap time, dinnertime, playtime then there are appointments to make and get to and housework and homework but let’s pause for a minute.  Let’s imagine a world where none of that existed.  None of that was expected of you anymore.   I bet you are thinking, “sweet, sign me up.”  Not so fast.   So much of our life as mom we simply take for granted and its gone in a blink of an eye.  What if you woke up tomorrow and you were not physically able to perform these activities anymore?  This happened to Sarah.

Sarah’s ALS Story

“Now she’s 5. ALS has completely changed the person I thought I was going to be, the mom I thought I was going to be. I’m in a wheelchair, my arms and hands are so weak I need help to eat and a machine breathes for me at night. I wasn’t the one to teach my daughter to kick a soccer ball. I can’t bake with her or do art projects. I can’t write letters for her to trace or rub her back while she falls asleep.”  This is part of Sarah’s story.  She was a normal healthy mom of a 2-yr-old who was diagnosed with ALS  in her early 30’s.

ALS (amyotrophic lateral sclerosis or Lou Gehrig’s Disease) is one of the worst diseases of our time. 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 treatments or cures.


living with als

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.

Currently there is no treatment and no cure for ALS but the ALS Therapy Development Institute (ALS TDI)–a non-profit biotech is 100% focused on finding treatments and a cure.  They also actively build awareness of the disease and raise funds for research.  The MAK (Mom Always Knows) Team believes 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 would love if you would donate or share this cause with others!  We need to get the word out about ALS and the ALS TDI!

Sarah’s story is amazing, one I encourage you to read!  So what would you give?  Would you give up an ability for the day or an hour to understand what life is like with ALS?   Will you donate to ALS?  Will you share this cause on your social media channels using #WhatWouldYouGive and #EndALS tags?  Anything you can do would greatly help Sarah and this great cause out!

Find out more info about ALS, ALS TDI, the #WhatWouldYouGive campaign and how you can help here!