Flex On ALS
Donation protected
Recently, the Smith family received some of the best and most devastating news they could ever hear: that they were adding another baby girl to their family in April 2021, and a few weeks later, that Scott had been diagnosed with ALS (amyotrophic lateral sclerosis.)
For those of you who are unfamiliar with ALS, it is a progressive neurodegenerative disease that causes the loss of muscle control. Sometimes there is a genetic cause, but most of the time the cause is random and unknown. Patients are told there is no cure and are given an average life expectancy of 2-5 years. While you may hear it is very rare, it's actually not. About 15 Americans are diagnosed with ALS every day. It's a particularly cruel disease, because piece by piece, it takes away a person's life and independence, while keeping their mind intact.
So far, Scott has experienced voice, swallowing, and hand weakness. It has already taken away his ability to sing, exercise in the way he loves, and train clients effectively. Losing these things alone have been devastating for both him and his entire family.
Scott and his incredible wife Jamie are choosing to focus on the positives in life in order to keep moving forward. Their hope is that through this journey they can bring collective awareness to this disease that's been painfully underfunded and overlooked. A quote they are living by states, "While we can accept the diagnosis, we do not have to accept the prognosis."
They are choosing to fight for Scott's life and remain hopeful that a scientific breakthrough will happen in his lifetime. Through this fundraising effort, we are hopeful to be able to provide them with financial assistance to aid in medical care and treatment for Scott. It is important to the family for each of you to know that any funds generated here will be to pay for specific treatment and care, which is incredibly costly, rather than to sustain a lifestyle.
If you know Scott or Jamie, you know that they are some of the best humans on this earth. Their daughters deserve to grow up with an incredible father and know what an amazing man he is. His life is worth fighting for. We hope we can count on all of you to join us in this fight.
(** added December 7, 2020**)
Several of you have asked about providing meals for the family as well. For those of you who may be interested in the meal train, I've included a link here:
https://www.mealtrain.com/trains/klrlnz?fbclid=IwAR30GaE8HqY6yM-UgJM1j-rMS8o-Ommw605NA2-CwxC7HbnNo1paJ-8v4-c
For those of you who are unfamiliar with ALS, it is a progressive neurodegenerative disease that causes the loss of muscle control. Sometimes there is a genetic cause, but most of the time the cause is random and unknown. Patients are told there is no cure and are given an average life expectancy of 2-5 years. While you may hear it is very rare, it's actually not. About 15 Americans are diagnosed with ALS every day. It's a particularly cruel disease, because piece by piece, it takes away a person's life and independence, while keeping their mind intact.
So far, Scott has experienced voice, swallowing, and hand weakness. It has already taken away his ability to sing, exercise in the way he loves, and train clients effectively. Losing these things alone have been devastating for both him and his entire family.
Scott and his incredible wife Jamie are choosing to focus on the positives in life in order to keep moving forward. Their hope is that through this journey they can bring collective awareness to this disease that's been painfully underfunded and overlooked. A quote they are living by states, "While we can accept the diagnosis, we do not have to accept the prognosis."
They are choosing to fight for Scott's life and remain hopeful that a scientific breakthrough will happen in his lifetime. Through this fundraising effort, we are hopeful to be able to provide them with financial assistance to aid in medical care and treatment for Scott. It is important to the family for each of you to know that any funds generated here will be to pay for specific treatment and care, which is incredibly costly, rather than to sustain a lifestyle.
If you know Scott or Jamie, you know that they are some of the best humans on this earth. Their daughters deserve to grow up with an incredible father and know what an amazing man he is. His life is worth fighting for. We hope we can count on all of you to join us in this fight.
(** added December 7, 2020**)
Several of you have asked about providing meals for the family as well. For those of you who may be interested in the meal train, I've included a link here:
https://www.mealtrain.com/trains/klrlnz?fbclid=IwAR30GaE8HqY6yM-UgJM1j-rMS8o-Ommw605NA2-CwxC7HbnNo1paJ-8v4-c
Fundraising team (4)
Katie Keys
Organizer
Overland Park, KS
Jamie Smith
Beneficiary
Jess Criswell
Team member
Christopher Wheatley
Team member
Mike O
Team member
