Edward Blakey's Fundraiser
We Are Fundraising to Help People Born with LBSL!
Join me and help make a difference, please give today.
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Edward Blakey
I donated in support of this campaign.
$100
Brandon Blakey
I donated in support of this campaign.
$100
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Jeremy Brown
I donated in support of this campaign.
$100
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Lloyd Stambaugh
"It is a privilege to support the effort to cure LBSL and support my longtime friend Ed Blakey. "
$1,000
A supporter of Edward Blakey
"Happy to help the cause in your honor. "
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Elizabeth Irwin
I donated in support of this campaign.
$50
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Adam Elsey
"Happy to support my friend Ed and this wonderful cause! Much love brother! "
$100
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Scott Green
"Anything to support my brother Ed!"
$100
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Ray Baker
I donated in support of this campaign.
$100
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Joseph Ciesielczyk
"Let's work for a cure!"
$50
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Calvin Aguillard
"My donation is in honor of my nephew Eddie Blakey who has LBSL and the hope that others can thrive as he does."
$50
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Robert Parson Jr
"Good luck Ed!"
$100
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Nicole Blakey
"You're absolutely amazing! I'm so To have you as my brother "
$50
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joseh reuben
"Thanks for all you do Ed!"
$100
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Nelson Wolff
"Esquire Ed is a man of honor and courage, guided by his faith to serve others. I’m happy to support him and his cause. "
$100
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Rodney Boyd
"Glad to support this important cause and my friend Ed Blakey."
$100
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Edward Blakey
"Ed has given my family so much hope! My duaghter has LBSL and Ed is a mentor and shows us that she can accomplish her goals! Thank you Ed! "
$100
The LBSL community affectionately calls me the OG!
They don’t call me that just because I am one of the oldest people with LBSL that is known in the United States (and maybe the world). They call me that because I try to inspire and encourage people to live their best life everyday!
I lived most of my life not having the correct diagnosis, because LBSL wasn’t even discovered until 2003. After decades of misdiagnosis, I got the presumptive diagnosis of LBSL in 2014, and that was genetically confirmed in 2018.
It was life-changing to learn that LBSL wasn’t just a muscle disorder, but in fact is a mitochondrial leukodystrophy that greatly affects energy production. As an attorney, I always had to push harder in law school and at work to overcome many obstacles. Having the correct diagnosis helped me shift from a mentality of pushing myself to (or over) the limit, to a mindset that prioritizes rest, energy conservation, and mindful well-being.
Despite many obstacles, I have tried to live a fairly normal, full life just like anyone else. I try to focus on being an independent homeowner, and being there for my partner, my friends, and my family whenever I am needed. As a board member and active member of the Cure LBSL community, I also try to use my lived experience to help others.
My goals for this fundraiser are to make sure that Cure LBSL can continue to focus on improving quality of life of people with LBSL. Of course, everyone wants a cure or a major medical breakthrough, but I’m focusing right now on prioritizing the things like rehabilitative services and non-medical ways to improve quality of life.
Living with LBSL is a complicated, multi-layered balancing act between sleep/rest, exercising, independence, and enjoying life. They call me the OG because I am a seasoned leader who reminds everyone of their potential and encourages them to live for today!
Thank you for donating to Cure LBSL! (Don’t forget to ask your employer about matching funds).
Your friend and LBSL O.G. --
Ed