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Bryan Jones and Family ALS Battle

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In July Bryan and Lindsey Jones celebrated 20 years of marriage. Shortly after, they received earth shattering news. Bryan was diagnosed with ALS (Lou Gehrig's Disease). After several months of Bryan having increasing speech issues, many doctor visits and tons of testing, they had their answer. But it was the one diagnosis everyone was praying it wasn't.


ALS is a degenerative neuromuscular disease for which currently there is no cure. Every person diagnosed with ALS has a different progression. But one thing that is for sure is that this cruel and unforgiving disease requires a lot of changes for families and is financially burdensome. Typical annual care averages at $100,000. 

Bryan's specific diagnosis is Bulbar Onset ALS, meaning his symptoms have started with speech and swallowing difficulties. If you would like to learn more about Bulbar Onset ALS go to https://www.als.org/understanding-als

Bryan's ability to speak is becoming more and more difficult. Each month there are noticeable changes to Bryan's speech and strength in his upper extremities. They are facing this with courage and determination, and leaning on the Lord for strength. Always remembering that even through this storm, GOD IS GOOD!! They are taking one day at a time and embracing every moment. They continue to remain social and do all the things Bryan enjoys, such as time with his family, fishing with his boys, and being with friends.


The Jones' have an amazing support system from their families and also their church family and friends. We have no doubt that those that know and love them will show up big for them! Our goal is to come along side of Bryan, who is only 39, his wife Lindsey and their three children, Taylor-20, Brandon -19 and Owen-10. We want to try to ease the heartbreak this diagnosis has brought, leaving them devastated.  We have a goal of raising $100,000 to help offset the cost of Bryan's care and all the changes that will need to take place. Insurance will help with some of Bryan's care, but what it does not cover is the loss of income, home modifications, mobility aids and equipment needed to help Bryan keep his independence and keep him safe. 

Bryan is the primary breadwinner of their household and carries the families health insurance, but as time goes on that will have to change. With that also comes an increase in his care, making it difficult for Lindsey to secure a full time job with benefits, as she currently is a hair dresser.  

The Jones' have lived in their current home for 15 years, making memories and raising their family there. Their goal is to stay in their home permanently, but home modifications will eventually need to be made for Bryan's safety and care.  With that comes highly expensive cost.

If you know Bryan and Lindsey, you know they are very hardworking and selfless people. This is absolutely the hardest thing for them to accept this kind of help. They are both incredibly hardworking and have been independently doing life together since they were 18 and 19 years old, raising three beautiful children together. They are the very first to step in and ask others how they can help when life throws curves or set backs. They are both the last people to put themselves out there and ask for help. So we are asking for them as we are all realizing the magnitude of cost and loss ALS brings on a family. It's just too much for a family to handle on their own.

Bryan and Lindsey have set up a trust to ensure any money donated to Bryan's care and taking care of his family will be safe and used accordingly. 

We hope to use this page as a way to communicate updates as well! It can be burdensome on them to always be talking about Bryan's condition and we hope this will help alleviate some of that for them as they face each day. They can not even begin to explain their appreciation of all the offered prayers and outpouring of love and thoughtfulness that people have already shown them. It means so much and it is so reassuring to them to know they won't walk this difficult journey alone.
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Donations 

  • Steve Hackman
    • $100 
    • 4 mos
  • Benjamin Weaver
    • $100 
    • 4 mos
  • terry blanton
    • $25 
    • 10 mos
  • Anonymous
    • $100 
    • 10 mos
  • Anonymous
    • $200 
    • 1 yr
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Fundraising team (4)

Cassie Boeckman
Organizer
Raised $5,485 from 46 donations
O’Fallon, MO
April Crahen
Beneficiary
Lindsey Jones
Team member
Raised $2,010 from 17 donations
Jamie Thornton
Team member
Raised $1,400 from 7 donations
Elizabeth Hantack
Team member
Raised $420 from 7 donations
This team raised $18,614 from 184 other donations.

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