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Jason Carr's ALS Journey

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Jason's symptoms started five years ago.  They would come and go and initially seemed to be more of a nuisance than a  precursor to a life altering diagnosis of ALS (Lou Gehrig's Disease).  Unfortunately, ALS is very difficult to diagnose because it is a rare neuro degenerative disease--Jason could not put a name with his symptoms until his diagnosis in April 2015.

We have since completed the renovation of our three level 1910 farmhouse and sold it to prepare for what was and is looming around the corner.  Jason has lost his mobility and is now dependent on his power wheelchair.  We moved to a one level home better suited for his declining condition. 

He can no longer perform his job as a carpenter due to the physical challenges he is facing.  In the two years since his diagnosis and his recent physical challenges, it has become a necessity for him to have full-time support.  It made the most since for me to transition from my job to be with him as his caregiver, provide the additional emotional support to our boys, and keep my head clear to focus on our family.  Hence, a pretty substantial blow to our family's income. 

We have two young boys, Caleb (13) and Hollis (8).  That has been the most difficult part of grasping the unknown hurdles ahead.  There is no cure and we have no way of knowing how much time we have together. 

Promising developments have been made in ALS research and we remain hopeful that we will be able to see some of those results as Jason receives care from the Mayo Clinic.  He was enrolled in a stem cell study out of Israel (Brainstorm) that has shown some very positive results for other patients.  Though he received the placebo, we remain hopeful that his participation will benefit other neurological patients of ALS, Parkinson's, MS, and many others.

For those who know Jason, he is a devoted father, friend, and partner in life.  He's passionate about music, reading, politics, exploring, carpentry, and hiking.  He is a gifted writer and I encourage you to read his blog @

Our family needs your support whether it is a visit,  help around the house, and/or money.


  • Steph Lee
    • $50 
    • 7 yrs


Danielle Hamilton Carr
Hopkins, MN

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