Families are the foundation of the Foundation

November 23, 2020

Every inch of progress towards finding a treatment and/or cure for Sanfilippo Syndrome happens because of the individual families of children with this disease. Families fighting to change fate for their child and all the others.

Cure Sanfilippo Foundation is honored to have many families from around the country and world choose to partner with us, supporting our focused mission of accelerating research to find a treatment and/or cure for Sanfilippo Syndrome.

“We’ve always said, ‘Cure Sanfilippo Foundation is the families,” said Glenn O’Neill, President and Co-Founder of the Foundation. “And so much is possible today because of the work families have done for decades.”

Recently, several partner families hosted fundraising events to support the Foundation’s mission. Each one is helping fund research for a treatment or cure.

Friends of My Pal Spencer

Supporters of Spencer Smith didn’t let a global crisis stop them from helping this year.

Spencer Smith - Summer 2020

For the past several years, people in the Lexington, MA, area have formed a Spencer’s Sprinters team to run the Battlegreen Genesis Run. This year, the team of Spencer’s Sprinters individually completed their socially-distant 5K and 10K races and submitted their times. In addition, many of the Sprinters fundraised for the Foundation, generating more than $15,000.

Additionally, the annual My Pal Spencer Golf Outing and Auction hosted in honor of Spencer in Rome, NY, had to be cancelled this year. But Spencer’s family reached out to folks who have attended in past years, asking if they would support the mission, despite there not being an event this year. The response was overwhelming, with love and generosity pouring in, and raised more than $97,000!

“It was amazing to see this great group of supporters of Spencer and his family find a way to continue their annual traditions of helping raise awareness of Sanfilippo Syndrome and donations to ensure research for a cure continues,” said O’Neill.

Purple Lemonade to Honor Blair

Grey Chapin has been a devoted sibling to her older sister Blair since she was a toddler. Blair passed away in April 2017, but Grey continues to fundraise for and spread awareness of Sanfilippo Syndrome.

Purple Lemonade Stand 2020 - Grey Chapin

Determined to not miss the 10th year of the family’s annual Purple Lemonade Stand, Grey figured out how to conduct it in a socially-distant way. Styled as a drive-thru, donors enjoyed lemonade and baked goods to help fund research to cure Sanfilippo Syndrome. Thanks to Grey’s determination and creativity, her parents’ support, and the generosity of friends and community members, the event raised more than $25,000.

“Today was important. After being derailed in April for the 10th anniversary of the Purple Lemonade Stand, Grey did not want to let 2020 go by without honoring her sister and doing her part to help other children with Sanfilippo Syndrome. We are truly humbled by your support in such uncertain times. The baked goods were plentiful, donations generous, and volunteer base strong. Our hearts are full tonight. We cannot wait to present the Cure Sanfilippo Foundation with an amazing donation!” posted Blair and Grey’s mom Susan on Facebook after the event.

Virtual Cycling Challenge

The Swedish family of Saga and Maia, both of whom have Sanfilippo Syndrome Type C, coordinated an event on Nov. 14, 2020. Swedish multiple Paralympic champion Anders Olsson and retired professional hockey player Jons Frögren supported the cause by participating in virtual endurance races, along with other dedicated supporters. Saga and Maia’s dad Andreas joined the virtual event by completing a virtual marathon. Together, they raised more than 72,000 Swedish Krona.

Krama Era Barn (Sweden) held an endurance event fundraiser in November

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