News and information on issues relevant to you as a parent, caregiver, and advocate of a child with Sanfilippo Syndrome.
News From the Foundation
How to keep kids occupied and learning while home | Resource List
Kids are home. Now what to do with them?How to keep them occupied, learning, and physically active is on the minds of parents everywhere as we all practice social distancing. Maybe that’s you or someone you know.We want to help.You’ve done so much for the families of...
Statement on Coronavirus
The world is grinding to a halt because of Coronavirus. Except for one thing that continues at the same pace ... time. And time is the greatest enemy to children with Sanfilippo Syndrome. Coronavirus is impacting the Sanfilippo community on a few crucial and...
Amid Coronavirus (COVID-19) outbreak, O’Neills’ 726 days of isolation sparks interest
One Sanfilippo family's experience relevant to today's Coronavirus concerns about self isolationThe O’Neill family voluntarily quarantined themselves for 726 days (4 days short of 2 years) a few years ago to avoid a common virus that would have made their daughter...
WILLPower team raises $41,000 in 2020 The Woodlands Marathon Charity Challenge
For the third year, the Byers family has lead the WILLPower marathon and fundraising team to great heights at the 2020 The Woodlands Marathon, including a first-place finish the Charity Challenge.The Byers family has running in their blood, each one of them loving to...
Family raises $7,000 for Foundation with annual bowling event
Levi Ormeroid's family hosted Strike For A Cure, its first-ever bowling fundraiser in his honor, this past weekend to benefit Cure Sanfilippo Foundation and the event was a massive success. The sold-out event raised more than $7,000 which will help accelerate research...
I see you, parents of little kids and kids with special needs …
As her family attended Ash Wednesday Mass today, Valerie Byers thought about what it means to welcome families of all kids, including those with young and boisterous children and those with special needs. The power of including them when they often worry of being...
Parent Prioritization of Meaningful Treatment Targets for Sanfilippo Syndrome
At the WORLD Symposium 2020, Cure Sanfilippo Foundation Chief Science Officer Cara O'Neill, MD, FAAP, and Research Projects Coordinator Elise Drake, PhD, gave a poster presentation entitled "Parent Prioritization of Meaningful Treatment Targets for Sanfilippo...
Wells Warriors Wrestling Team, honoring Spencer, headed to state finals
More than 20 years ago, Coach Lewia coached Spencer’s Dad, Nate, in wrestling. Today, Coach Lewia coaches the Wells High School Warriors Wrestling Team. And he was ready to do whatever he could.Coach Lewia told his team of wrestlers about Nate, and that his...
A little sweetness for your Valentine’s Day
Happy Valentine's Day!Here are some favorite family recipes from several of our partner families as a symbol of our gratitude for you. Enjoy one (or more) of these and think of the warm wishes we're sending your way.Byers’ Family Cutout Cookies3 cups flour1/2 tsp...
“Hope is love on a mission,” says Dr. O’Neill in acceptance speech
"There is no such thing as 'false hope'. Hope Is LOVE ON A MISSION!"Cure Sanfilippo Foundation's Chief Scientific Officer Cara O'Neill, MD, FAAP, made powerful remarks before the audience of patient advocates, scientists, and industry partners as she accepted the...
Cure Sanfilippo advocates for open access to tax-funded research
Cure Sanfilippo Foundation joined 72 other patient- and disease-advocacy organizations in voicing support for a strong national Open Access policy that would guarantee immediate, free access to and full reuse of the results of scientific research that our tax dollars...
Thousands raised by local Maine band for Sanfilippo research
Boyz Gone Wild has done it again, raising thousands for research to cure Sanfilippo Syndrome, in honor of a Wells, ME, child. This is the second year Boyz Gone Wild, the self-declared New England's Ultimate 80s tribute band, has hosted this retro fundraiser in honor...
Artists bring to life inner superhero of children with Sanfilippo Syndrome
The children and their families who battle Sanfilippo Syndrome have superhero levels of resilience, strength, and courage.The Superhero Project brings the superhero within children facing serious illness or disability to life through unique art pieces, and has...
Meglio Knives donating 10% of premium knives to benefit Sanfilippo
Meglio Knives in San Diego, CA, is known for making the best culinary, chef, utility, paring, and tactical knives from military-grade materials. These premium knives are used by some of the best chefs in the world, as well as home cooks who want an exceptional...
Foundation sets ambitious plan for next three years: 5 clinical trials, 100 children
Cure Sanfilippo Foundation has an ambitious plan for the next three years:5 clinical trials, treating 100 children, to prove at least 1 effective treatmentAmazing things have happened in the six years since the Foundation was created because of the generosity of tens...
Sanfilippo girl coronated as Princess Rose, fulfilling her wish
Rose Mendoza has always loved princesses, especially the part where you wave regally to your subjects.Rose also has Sanfilippo Syndrome, a terminal children's disease likened to Alzheimer's in children.Volunteer members of the Tournament of Roses volunteer and the...
Foundation-supported Anakinra clinical trial listed as “recruiting”
As a collaborator on this study, Cure Sanfilippo Foundation is thrilled to announce the MPSIII (Sanfilippo) Anakinra clinical trial is now listed as "recruiting" on ClinicalTrials.gov. This is an option for any Type of Sanfilippo (A, B, C, D). Read the full listing at...
Sanfilippo child featured on St. Louis billboards this holiday season
If you are driving around the greater St. Louis area, there's the chance that you might see the face of Carson Burroughs. OutFront Media featured Carson and the fight to cure Sanfilippo Syndrome on multiple billboards this holiday season.According to Carson's mom...
Happy Holidays from our families to yours
Sharing food is a universal symbol of love, gratitude, and caring. All of which we have in abundance for you, our supporters.Here are some treasured recipes from several of Sanfilippo families as a symbol of our profound gratitude for your support. Perhaps one or two...
Holidays are different, but still precious as a Sanfilippo parent
The following was written by Brittany Lagarde, parent of Sawyer (MPS IIIA). Originally posted on Facebook. We appreciate her permission to share her unique perspective on the holidays as a parent of a child with Sanfilippo Syndrome.this time of year...lots of...