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House of Hope

$900 of $20,000 goal

Raised by 6 people in 13 months
Created June 30, 2018
Give So They Can Live
on behalf of Give So They Can Live Foundation
Daron, Aubrey and Angie were all diagnosed with pantothenate kinase-associated neurodegeneration (PKAN), a rare and life-threatening genetic disorder that affects vision, muscle movement, speech and intellectual function. Children with the disease usually do not live past 11 years old. “The doctors say to simply make the time count, because they may not have much of it.”

Fortunately, The Spoonbill Foundation  has been searching for a treatment or cure for this disease for over 25 years. While donating their time and money to find the cure, the foundation has also helped with therapies for the children that are affected by PKAN. In January 2018 they had a huge breakthrough! The lab results came back showing the medication they had been developing would help stop, slow and possibly reverse the progression of PKAN.

The only thing standing in the way of this family and hundreds more like them, getting the medication they need, is money. The Spoonbill Foundation must raise $2 million in order to begin administering the medication to affected families.

As of 6/14/18, The Spoonbill foundation along with parents and communities of affected families, have raised a total of $711,964.00. Please join with us to reach the goal of $2 million to ensure that, not only this local family, but all those affected have the opportunity to live.

The House of Hope will be donating all proceeds to the Spoonbill Foundation to give these kids a bright future.

If you would like to be a part of this journey, follow our story on facebook @givesotheycanlive and donate to the cause at gofundme.com/PKANhouseofhope.

For more information on the Spoonbill Foundation and the disease PKAN go to:  spoonbillfoundation.org 
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$900 of $20,000 goal

Raised by 6 people in 13 months
Created June 30, 2018
Give So They Can Live
on behalf of Give So They Can Live Foundation
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