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Warren Osborn

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KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
440
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Though I don’t believe he was a forum member, I had followed the story of Warren Osborn because he had used his substantial wealth to undergo more stem cell transplants and other experimental treatments from around the world than anyone I—and Dr. Bedlack for that matter—had ever heard about.

Unfortunately, they were not successful and he passed the other day, about four years from diagnosis. I suppose it is possible that he slowed his progression to a modest degree, but my gut tells me he would have progressed as he did with or without his efforts. I sure don’t blame him for using his wealth to try to find something that worked.

For me, the message that Laurie and others here espouse—to live your life until you can’t—resonates more strongly with Warren‘s passing, because all the resources in the world and the willingness to try anything and everything to dramatically slow or halt progression can’t change the hand we are dealt. We either progress quickly, moderately, or slowly, and there is presently nothing available to alter that course. Maybe some day, but not for our generation of pALS.

RIP.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,166
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry to hear this as I am for every lost PALS. I hope that he was happy with his choices and is now at peace. Wishing comfort to his family and friends
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,922
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I didn't know him, but am sorry for his passing as it is a huge loss to those who loved him.

I couldn't agree more - acceptance was the key for me. This isn't some 'fight', there is a lot of living to do in whatever time any of us have left.
 

Mon

Active member
Joined
Feb 22, 2020
Messages
82
Reason
Loved one DX
Diagnosis
00/0000
Country
CA
State
ON
City
Toronto
I followed the story if Warren Osborn on instagram. He was very good about giving updates and really showed the coarse of the disease and his quest to slow the disease through his pictures and narrative. What i found interesting was the tremors he documented with video and his comments about them. They were pretty obvious tremors, not a small shake. I wondered if stem cells could have caused adverse effects like strong tremors. He really did a ton of stem cells. I really havent heard alot about tremors from PALS. Ive heard alot about fasiculations but not tremors.
Warren seemed like an exceptional guy. A huge loss for his family & community. They are in my thoughts.
 
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