Cure Sanfilippo Foundation Announces New Board Member

Ben Von WongCure Sanfilippo Foundation is thrilled to announce that Benjamin Von Wong has been named as a new Board Member. Benjamin is an artist and creative mind who produces art masterpieces, largely by rallying local volunteers into a united team working toward a shared vision.

Benjamin studied engineering and graduated from McGill University in 2008, with a degree in Mining Engineering. He worked for Golder Associates as an underground mine planning and design engineer. In 2012, he left engineering to turn his passion for photography into a full-time career. Benjamin has since gone on to produce world-renowned epic photography and art that has received critical acclaim and coverage from top media outlets. In recent years, his work has focused on conservation and social change.

Benjamin has been a major part of Cure Sanfilippo Foundation’s mission, starting back in early 2014. As a complete stranger at the time, he answered an email asking for advice on creating a “viral video.” He decided to volunteer his vision and videography skills and
created the 3-minute “Saving Eliza” video and follow-up videos.

These videos went on to raise $2.2 Million in one year, allowing Cure Sanfilippo Foundation to help fund a clinical trial and new cutting-edge research. Benjamin has continued to provide expert marketing advice and support throughout the years for the cause.

In 2018, he co-produced the “Saving Carter” video (www.SavingCarter.com) which raised $1 Million in just 45 days for the Foundation efforts to fund a new clinical trial for children. Benjamin has
had a major hand in the creativity that has helped raise more than half of all funds raised by Cure Sanfilippo Foundation (now totaling over $6 Million).

Benjamin joins eight other Board Members, each with a unique skill set who drive the vision of Cure Sanfilippo Foundation.

Cure Sanfilippo’s President, Glenn O’Neill, commented, “We are very lucky and honored to have Benjamin as an official part of our Foundation. His creative expertise in social media, photography, videography, storytelling, marketing & branding will be a huge asset. In addition, Benjamin’s feedback about various topics on our Foundation throughout the years has been very helpful. Benjamin brings a fresh problemsolving mentality to any challenge and will be a valued addition to our Board.”

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Cure Sanfilippo Foundation is a 501(c)(3) not-for-profit organization dedicated to advocating for and funding research directed towards a cure and treatment options for patients with Sanfilippo Syndrome. Sanfilippo Syndrome, also called MPS III, is an inherited disease of
metabolism that means the body cannot properly break down long chains of sugar molecules called mucopolysaccharides or glycosaminoglycans (i.e., GAGs). A genetic defect passed on
from each parent results in missing or poorly functioning enzymes needed for cells to work normally. Without these enzymes, cells are unable to break down and recycle cellular waste. Over time, this waste builds up causing cells to act abnormally and then to die. Children with
this genetic disease face a progressively debilitating and rapid decline in physical and intellectual abilities, leading to an early death.

For more information on the Cure Sanfilippo Foundation and Sanfilippo Syndrome, please visit www.CureSFF.org. Contact Cure Sanfilippo Foundation at curesff@gmail.com.

Cure Sanfilippo Foundation

501c3 non-profit
(Tax ID: 46-4322131)

curesff@gmail.com

P.O. Box 6901
Columbia, SC 29260

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