Life looks quite unfamiliar for all of us. But we take heart because one thing hasn’t changed: people are still thinking of others, finding ways to make a difference. Which is why families with Sanfilippo Syndrome are asking for help. Right now.
Like everything else, research to treat or cure Sanfilippo Syndrome has been impacted. Events and projects that fund research have been cancelled or postponed. This has significantly impacted funding for research (down 80% over past two months). Without strong funding, research and clinical trials for a cure will grind to a halt.
Some things can wait for life to return to normal. But children with Sanfilippo Syndrome simply can’t. A cure can’t wait. Time is the one thing these children don’t have. The parents heartbreakingly watch as Sanfilippo Syndrome damages their child’s brain and body every minute of every day, stealing their abilities and taking away their future.
Cure Sanfilippo Foundation joins charitable causes from around the world for #GivingTuesdayNow, a new global day of giving and unity that will take place on May 5, 2020, as an emergency response to the unprecedented need caused by COVID-19.
“Sanfilippo Syndrome doesn’t take a day off, so the Foundation and its partner families respectfully must continue fundraising for research,” said Foundation President Glenn O’Neill. “Every bit of support – donations and sharing the mission – ensures research for a cure continues uninterrupted for Connor and other children. These families can’t afford to wait.”
The Foundation’s week-long GivingTuesdayNow “A Cure Can’t Wait” campaign celebrates the togetherness and positivity that have marked these uncertain times for every person in the world. The support of the “A Cure Can’t Wait” campaign demonstrates how much these human traits continues to abound and people’s continued compassion to support families of children with Sanfilippo Syndrome.