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Friday, October 13, 2017

#WhatWouldYouGive to Help #EndALS

When Sarah Coglianese was diagnosed with ALS, she was 33 years old.  Her daughter, Scarlett, was just 2 years old.  While Scarlett was learning to take her first steps, Sarah was beginning to use a walker...and then...a wheelchair.

In a report 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 dust pan and starts sweeping the floor without being asked.  If my foot slips off my foot rest, 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 the 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 (voices, arms, hands, or 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 daughter is stronger, braver, loving and empathetic...something we all hope for our children.

I am teaming up with Linqia and the ALS Therapy Development Institute (ALS/TDI) - a non-profit biotech company that is 100% focused on finding a treatment and cure and 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 on ability to understand what life with ALS might be like.

Last year alone, Linqia raised $15,000 through this campaign.  87% of which went immediately into the lab at ALS/TDI.

I am going to ask each and every one of you to consider make a tangible difference in the lives of others.

Let's all share a message of hope and education around ALS and pass this message forward!!

The goal this year is to raise $50,000 through our collective efforts.  Up to $25,000 will be matched dollar to dollar by an anonymous, but VERY generous donor.

Together we can raise funds to help make ALS a thing of the past.  Remember the Ice Bucket Challenge??


easyweimaraner said...

I hope so much that it soon is completely treatable... it is so sad that more and more young people get this diagnosis...

Pip said...

I agree, it is really such a cruel and horrible disease. I had no idea it was so common. I sure hope they find a cure soon. Bless Scarlett and Sara for sharing their story

♥♥ The OP Pack ♥♥ said...

ALS is a horrible disease. Our Dad's boss from his pre-retirement days has a daughter who contracted ALS as a very young woman. She has battled long and hard and has been in many test programs. Our family has contributed numerous times to the ALS funds and hope that one day there will be a cure.

Woos - Lightning, Misty, and Timber

ann thompson said...

No one should have to have such a horrible disease. Like Pip, I didn't realize it was so common.

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