This GoFundMe was started by Erica Lee. I live I Plano, TX. I am a friend of the Woleben family. I met them when I interviewed them for a community magazine to write about Will’s story. These funds will be given directly to a research team at UT Southwestern Medical Center (UTSW) in Dallas, TX to fund research through FDA-approved human trial for a SURF1 Leigh Syndrome treatment or cure. I have added Kasey Woleben, Will’s mother and a Board member of the CureSURF1 foundation, as a beneficiary to this account so she can directly withdrawal the funds to the research fund account.
If you would like a receipt emailed to you which records your donation amount for tax recording purposes, please provide us your contact email in a private
comment with your donation. (Be sure to check the box under your comment that says "Hide my comment from everyone but the organizer and team.") You will receive an emailed receipt from the 501 (c) 3 Cure Surf1 Foundation, which is solely dedicated to raising the research funds and will receive all funds raised by the One Day for Will GoFundMe. We will use your contact info for no other purpose than to email your receipt. See https://www.curesurf1.org/
for more info on the CureSURF1 foundation.***
This Christmas Eve, we intend to set a record for a single day of giving
on GoFundMe. On Dec. 24, we intend to raise $3.5 million.
Some people have told us it can't be done. But with your help, a little boy named Will Woleben
will wake up to the best Christmas present of all this year.
Will was diagnosed with Leigh Syndrome
at age two. Of the 22,000 genes that make up Will's genome, one crucial bit of genetic material--the SURF1 gene
--is broken. Without a working copy of this gene, Will's brain cells cannot generate adequate energy to function and live. Though he appeared healthy at birth, Will's brain has been effectively starving to death on the cellular level since then.
Will turns age seven on Dec. 21. He has lost many of the developmental milestones
he reached as a toddler. He can no longer speak, walk, or swallow. The doctors have told Will's parents, Doug and Kasey, that he likely won't live past age ten.
Worldwide, only 1 in 100,000 children
like Will are born each year. Their median age of survival is 2.5 years. Because Will's disorder is so rare, his parents have become advocates and grass-roots organizers
working desperately to save their son.
After years of being told by doctors and drug companies all over the country that "nothing" can be done, Doug and Kasey now believe their family is at the epicenter of an impending medical miracle.
This past year, UT Southwestern Medical Center (UTSW)
began building a premier gene therapy lab in Dallas, just 30 miles from where the Wolebens live in McKinney, TX. The hospital team is committed to researching an experimental cure for the SURF1 disorder. Eventually they hope to customize that cure
for many other fatal genetic mutations. (Collectively, single-gene and mitochondrial defects affect more people than cancer.)
Dr. Steven Gray (a scientist who joined the UTSW team last December) has pioneered a new technique: using a human-safe AAV9 virus may to transport trillions of effective copies
of the SURF1 gene to a patient's brain. This is done via a single spinal tap. UT Southwestern hopes to lead an FDA-approved human trial for this experimental treatment within two years
, just shy of Will's ninth birthday.
But the research is costly. This is why we need your help to put $3.5 million in the bank now.
With the research funds secured, the UTSW team can work at top speed to meet the only timeline that can help Will. One day there will be a cure for the Surf 1 disorder,
and together this Christmas Eve, we can give Will his one chance to experience that cure.
All funds raised through the One Day for Will campaign will go directly to fund the SURF1 research
at UT Southwestern. When you give to our Go Fund Me on Dec. 24, you'll become part of the great crowd cheering for Will in his race against time. You'll also help every child born with a single-gene mutation
by advancing the science that could save them all.
The one-day urgency of our Dec. 24 GoFundMe campaign is designed to mimic the urgency faced by Will, his family, and his doctors. Will you join us in giving on Christmas Eve? If so, you'll help make a Christmas miracle come true
and you'll be part of breaking a heart-warming fundraising record. You'll also help us prove wrong everyone who says it can't be done!
If you would like a donation amount receipt emailed to you for tax recording purposes, please provide your contact email in a private comment with your donation. Be sure to check the box under your comment that says "Hide my comment from everyone but the organizer and team." You will receive an emailed receipt from the 501 (c) 3 Cure Surf1 Foundation, which is solely dedicated to raising the research funds and will receive all funds raised by the One Day for Will GoFundMe. We will use your contact info for no other purpose than to email your receipt. See https://www.curesurf1.org/
for more info on the CureSURF1 foundation.