Our Goal

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[Donate Now]

This Christmas Eve, we intend to set a record for a single day of giving on the crowdfunding site. 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. Though he can no longer speak, walk, or swallow, cognitively Will is a bright, normal boy. 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 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!

WAYS TO JOIN

  • If you want to help us fundraise $3.5 million in a single day, bookmark our GoFundMe page now and set a personal calendar reminder for Dec. 24. On Christmas Eve, take a brief moment from the holiday bustle to make your contribution to Will’s Christmas miracle.
  • If you wish to donate to SURF1 research without participating in the single-day challenge, please donate here now.
  • If you are intrigued by the one-day challenge but would like some goal-setting ideas, check out our Giving Inspiration page.
  • If you want to help us spread the word, please share our campaign with your family and friends. For easy posting to your networks, you can find the One Day for Will campaign on Facebook, Instagram, and Twitter.

 

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