Muskego parents were given a life-changing diagnosis. Their 3-year-old girl has a rare genetic disorder with no cure, but the family is not giving up hope. MORE: https://bit.ly/3Bcmma1 | FOX6 News Milwaukee
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Muskego parents were given a life-changing diagnosis. Their 3-year-old girl has a rare genetic disorder with no cure, but the family is not giving up hope. MORE: https://bit.ly/3Bcmma1 | FOX6 News Milwaukee
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She is so inspiring 💖 | Metro
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She is so inspiring 💖 | Metro
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What Causes Sanfilippo Syndrome | Cure Sanfilippo Foundation
What Causes Sanfilippo Syndrome | Cure Sanfilippo Foundation
Aug 8, 2023
curesanfilippofoundation.org
Cure Clark 5K event raises awareness and critical funds for Sanfilippo syndrome
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Cure Clark 5K event raises awareness and critical funds for Sanfilippo syndrome
8 months ago
MSNFox 47 News WSYM Lansing,MI
Sanfilippo Syndrome can't steal the sunshine in her heart. | Haidyn’s Hope - A Cure for Sanfilippo Syndrome
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Sanfilippo Syndrome can't steal the sunshine in her heart. | Haidyn’s Hope - A Cure for Sanfilippo Syndrome
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A peek inside life with Sanfilippo. @Abby's Alliance - Battling Sanfilippo Syndrome | Cure Sanfilippo Foundation
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A peek inside life with Sanfilippo. @Abby's Alliance - Battling Sanfilippo Syndrome | Cure Sanfilippo Foundation
46.7K viewsSep 8, 2023
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Sanfilippo syndrome causes unique physical traits. This is why many of our kids look like siblings. #sanfilipposyndrome #rarebeauty | Saving Sadie Rae: Cure Sanfilippo
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Sanfilippo syndrome causes unique physical traits. This is why many of our kids look like siblings. #sanfilipposyndrome #rarebeauty | Saving Sadie Rae: Cure Sanfilippo
88.7K viewsAug 21, 2023
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Around 80-90% of kids with Sanfilippo Syndrome have sleep issues. Children have difficulty falling and/or staying asleep, with many frequently pulling all-nighters. Luckily, Sadie still sleeps really well. We’re hopeful she’s in the minority and continues to sleep well as the disease progresses. #sleep #sanfilipposyndrome | Saving Sadie Rae: Cure Sanfilippo
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We hope that Sanfilippo syndrome will soon have approved treatments and can be added to newborn screening. Until then, we will keep advocating for doctors and parents to screen early because the earlier the diagnosis, the better the outcome. #sanfilipposyndrome #newbornscreening #diagnosis | Saving Sadie Rae: Cure Sanfilippo
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Sanfillipo foundation raising $100,000 in 10 days for a cure
Nov 17, 2017
Mail Online
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Sanfilippo Syndrome is so much more than just the facial characteristics and features. If you are concerned, I always suggest that you reach out to your PCP and discuss genetic screening. Also, I suggest that you go for full genetic screening if possible - for example, a whole exome test. Which will test for most, if not all, genetic conditions known. Just because you may think it could be Sanfilippo syndrome, does not mean it is. It also does not mean that your child couldn’t have another genet
24.7K viewsJun 25, 2024
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Because Sadie has Sanfilippo Syndrome, a neurodegenerative disease, she can’t control impulses and can be aggressive. But we will accept love from her in any form because she won’t always be able to express it. We don’t discipline her, but we will redirect her, which is the standard guidance for people with dementia. #sanfilipposyndrome #grandpa #savingsadierae #grandkids | Saving Sadie Rae: Cure Sanfilippo
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Sanfilippo syndrome is so much more than just facial features. We put this together because we often get messages from people asking if their child might have Sanfilippo based on pictures. You cannot diagnose this disease based on pictures alone. Here are other symptoms provided by Cure Sanfilippo Foundation : Early Symptoms of Sanfilippo:-Transient Tachypnea Of Newborn*(fast breathing after birth)-Coarse Facial Features*(frontal bossing/prominent forehead, full lips and nose)-Prominent, thick e
139.6K views11 months ago
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If you are concerned about your child possibly having Sanfilippo Syndrome you can reach out to the Cure Sanfilippo Foundation for guidance and testing. You can also request testing through a geneticist. The most accurate diagnostic tool is a blood test. Specifically, a metabolic panel or lysosomal storage panel looking into the family of MPS diseases. Testing can also be done by urine screening and skin cultures. Also, we know that there are other options when in comes to having children like ad
119.5K viewsDec 22, 2023
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What a family says about hippotherapy Sanfilippo Syndrome | Cure Sanfilippo Foundation
968 views10 months ago
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This kid is impossible to buy for because of Sanfilippo syndrome. Our go-to gifts are chewies, adaptive clothes, and iPad cases (because she frequently drops them). We used to like giving her experiences, but those increasingly seem to overwhelm her these days. Caregivers of kids with Sanfilippo or similar conditions, what gifts do you give? #sanfilipposyndrome #specialneeds #giftideas #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
339K viewsFeb 15, 2025
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Jase has an attenuated form of Sanfilippo Syndrome. | Cure Sanfilippo Foundation
1K viewsAug 17, 2024
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This is Trenton's story. Our journey with Sanfilippo syndrome | Cure Sanfilippo Foundation
35K viewsSep 1, 2023
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Today we’re going to a funeral for a little girl who also had Sanfilippo Syndrome and was only six months older than Sadie. Please consider giving to Cure Sanfilippo Foundation for #givingtuesday so one day soon we’ll have a treatment and we can stop burying our babies. #givingtuesday2023 #CureSanfilippo #sanfilipposyndrome | Saving Sadie Rae: Cure Sanfilippo
201.9K viewsNov 28, 2023
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What is Sanfilippo Syndrome? Meet a wonderful family and beautiful girl How does Cure Sanfilippo help? | Cure Sanfilippo Foundation
138.6K viewsMay 5, 2020
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Life with Sanfilippo Syndrome presents unique challenges to every aspect of life. Families of children with Sanfilippo Syndrome are generously allowing us to share with you how they tackle different aspects of their life to ensure their child has the best care and quality of life. And it couldn’t be more poignant than to launch this series on #RareDiseaseDay. Meet Julie, mom of 21-year-old Alex who has Sanfilippo Syndrome Type B. She is sharing their nighttime routine with Alex, some of the chal
5.9K viewsFeb 28, 2025
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Tips for having a successful Make-A-Wish trip with Sanfilippo Syndrome - with Brave Mr. B On a normal day, a lot of planning, gear, and accommodations are needed to keep a child with Sanfilippo Syndrome safe and thriving. These children also thrive on routine and struggle with disruption to it. And then there are the tremendous activity levels, sensory needs, and frequent sleep disturbances, caused by Sanfilippo, to manage. Now imagine taking that on the road. It’s a challenge for families of ch
2.9K viewsMar 21, 2025
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What is the Prognosis of Sanfilippo Syndrome? | Cure Sanfilippo Foundation
May 21, 2020
curesanfilippofoundation.org
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This is how we do it … Creating Alex’s nighttime routine (Life with Sanfilippo Syndrome) | Cure Sanfilippo Foundation
1.9K viewsFeb 28, 2025
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Sadie used to talk nonstop. She knew hundreds of words. Now, Sanfilippo syndrome has taken most of her speech. It took several takes to get this video. Sanfilippo is a rapidly progressive, fatal neurodegenerative disease. Put simply, it’s childhood dementia and it’s devastating. Every day without treatment matters. That’s why we work with Cure Sanfilippo Foundation. They drive research and advocacy to speed up treatments. Your donation goes directly to Sanfilippo work that gives kids like Sadie
381.4K views5 months ago
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This video captures just over one month in the lives of families fighting Sanfilippo syndrome type B — a rare, terminal childhood disease. In less than 36 days, families and communities across the country raised $4.2 million by Thanksgiving, and met our $5.5 million goal by December 1, to pursue potential early access to a treatment many parents were never told existed. That milestone matters. But it is not the finish line. The process still in front of us — access decisions, timelines, regulato
33.7K views4 months ago
TikTokcurepoppyandoliver
‘She’ll start to lose her ability to talk’: Louisiana family raising funds, awareness for 2-year-old daughter with rare genetic disease
Nov 22, 2024
ksla.com
#whatwouldyoudo #ifyourchild #raredisease #rare #fyp #sanfilippo What Is Sanfilippo Syndrome? Imagine Alzheimer’s and dementia, but in children. In a nutshell, that’s what every family of children with Sanfilippo Syndrome faces. Sanfilippo Syndrome — also known as Mucopolysaccharidosis type III or MPS III — is a terminal, neurodegenerative rare disease. It causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, o
11.8K viewsFeb 19, 2025
TikToktaci.lynn
Saving Liv – Cure Sanfilippo Foundation
Dec 2, 2022
curesanfilippofoundation.org
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Facing the Heartbreaking Reality of Sanfilippo Syndrome
7 months ago
TikTokhaidynshope
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