News and information on issues relevant to you as a parent, caregiver, and advocate of a child with Sanfilippo Syndrome.
News From the Foundation
Family Friday Blog: The Karlson Family
Get to know the Karlson family – Matt, Deanna, Joseph, Addison, and Seth! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Karlson family's honest and insightful...
Family Friday Blog: The Talbert Family
Get to know the Talbert family – Jeremy, Christina, Carson, Ryan, Lucas, and Parker! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Talbert family's honest and...
April 2021 Research Update: New research in 2021 and promising projects already underway
Children should have the chance to grow up. Parents should never have to watch their children suffer and die. There needs to be a treatment or cure for Sanfilippo Syndrome. That’s why you support the Foundation's mission to help children with Sanfilippo. Critical...
Family Friday Blog: The Haywood Family
Get to know the Haywood family – Jason, Ashley, and Sadie! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Haywood family's honest and insightful perspective. The...
Family Friday Blog: The Wallis Family
Get to know the Wallis family – Jeff, Kelly, Abby, and Emily! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Wallises' honest and insightful perspective. The...
Family Friday Blog: The Lagarde Family
Get to know the Lagarde family – Sam, Brittany, Sawyer, and Zion! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Lagardes' honest and insightful perspective. The...
Newborn screening pilot ScreenPlus that includes Sanfilippo Type A and B
When children with a rare disease are diagnosed at birth, they have the greatest opportunity to receive timely, approved treatments or participate in clinical trials that can provide them better quality of life and less pain and suffering. Early diagnosis and...
Family Friday Blog: The Sarkar Family
Get to know the Sarkar family – Samir, Jen, Sophia, and Carter! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Sarkars' honest and insightful perspective. The...
Family Friday Blog: The Hyder Family
Get to know the Hyder family – Jonathon, Nicole, Brayden, Gage, and Rylan! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Hyder's honest and insightful...
Family Friday Blog: The Byers Family
Get to know the Byers family – Tim, Valerie, Will, and Samantha! Find out what the past year has been like in their lives with this week’s Family Friday. Every week, a partner-family shares what’s been happening in their lives over the past year. You’ll get a glimpse...
Free online CME course available on Sanfilippo syndrome
A free, online, continuing medical education (CME) course is available for any healthcare provider interested in learning about Sanfilippo syndrome. The 30-minute course is targeted to healthcare providers who are unfamiliar with Sanfilippo, also known as...
Family Friday Blog: The Esposito Family
Get to know the Esposito family – Dave, Elise, Kiera, and Keaton! Find out what the past year has been like in their lives with this week’s Family Friday. Every week, a partner-family shares what’s been happening in their lives over the past year. You’ll get a glimpse...
New study: Economic burden of rare diseases estimated at $966B in 2019
In the most-comprehensive assessment of the total cost of rare diseases in the U.S. to date, the EveryLife Foundation for Rare Diseases' estimates in its "The National Economic Burden of Rare Disease Study" that the estimated economic cost of 379 rare diseases in the...
Family Friday Blog: Meet the Moon Family
Have you met the Moon family – Bill, Christine, Ella, Jacob, and Matthew? Hear what the past year has been like with this week’s Family Friday. Every week, a partner-family will share an update on their lives. You’ll get a glimpse into what it’s like living with...
Lysogene shares report on LYS-SAF302 biomarker data
Lysogene shared the following press release regarding its LYS-SAF302 Biomarker Data. The results were first shared at WORLDSymposium 2021 in February.PRESS RELEASE Lysogene Reports LYS-SAF302 Biomarker Data Presented at the WORLDSymposium™ 2021 Evidence of positive...
Thankful for you; Looking back at 2020 and ahead into 2021
Our goal at the beginning of the year was to raise $2 million in 2020, to help further research and clinical trials for children with Sanfilippo Syndrome. But when the world shut down in March, it seemed so far away ... and honestly nearly impossible. But time and...
Peer-reviewed publication of first-ever Caregiver Preference Study on Sanfilippo
The first peer-reviewed publication of the Sanfilippo Caregiver Preference Study was released in December 2020 in Neurology and Therapy. This is the first-ever Caregiver Preference Study regarding Sanfilippo Syndrome, which explores what parents consider “meaningful...
Exploring anti-fungal immunity and the airway microbiome in Sanfilippo syndrome (MPS III)
Cure Sanfilippo Foundation is funding a two-year project by Neta Shlezinger, PhD, at the Koret School of Veterinary Medicine in Israel, in collaboration with Dr. Annick Raas-Rothschild, Associate Professor and Director of Rare Diseases Institute at Sheba...
A parent’s thoughts on a powerful day, World Sanfilippo Awareness Day
Today is a day that includes you You are more than just a donor to us. You are a cherished part of the Sanfilippo community, and today the community is celebrating World Sanfilippo Awareness Day! Today is dedicated to the power of spreading awareness and sparking...
Save on your holiday cards and help cure Sanfilippo Syndrome
Now that it's November, people's thoughts are turning to the holidays. Early on people's holiday to-do list: ordering holiday cards! There's a way for you can save 20% and help cure Sanfilippo Syndrome at the same time. Use the promo code FUNDRAISESANFILIPPO on...