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Sanfilippo Project
United States
เข้าร่วมเมื่อ 12 มิ.ย. 2013
Welcome to a support and self-empowerment community focused on the families of children with Sanfilippo Syndrome - a rare, neurodegenerative and life-shortening genetic condition that is likened to a childhood form of Alzheimer's. Whether you are seeking information, support or a connection, we can all learn from each other’s experiences. Individually we are isolated families fighting a terrible and rare disease, but together we are a force of nature.
#SanfilippoProject #Learn #Share #PayItForward
#SanfilippoProject #Learn #Share #PayItForward
RDRT HOT TAKE - Jeremy was told his son will get 'eaten alive' at the local public middle school
RDRT3 - Jeremy shares his story
มุมมอง: 13
วีดีโอ
#RareDads Roundtable #2 -- Randy on why getting his daughter to smile each day makes him so happy
มุมมอง 1314 วันที่ผ่านมา
RDRT2 - Randy
#RareDads Roundtable - Lew Montgomery talks finding the proper platform to advocate and fundraise
มุมมอง 1421 วันที่ผ่านมา
Lew Montgomery is a former Iowa star running back whose son Lucas passed away from Sanfilippo Syndrome. Lew and his family continue to advocate today for the cause. Here's how he got started with fundraising.
RDRT3 QUICK CLIP #1 - Shaun
มุมมอง 2121 วันที่ผ่านมา
Sanfilippo dad Shaun O'Neal is grateful to be able to use the Katie Beckett Law to afford to get his son the services he needs
#RareDads Roundtable #1 -- Navy Lt. Billy finds ways to compartmentalize his thoughts while at sea
มุมมอง 1221 วันที่ผ่านมา
RDRT1 - Billy Pacl
#RAREDADS ROUNDTABLE (RDRT) HOT TAKES COMPILATION - SEPTEMBER 2024
มุมมอง 2021 วันที่ผ่านมา
Compilation of highlights from recent #RareDads Roundtable conversations
#RareDads Roundtable #2 -- Shawn talks about why the Roundtables can be helpful for dads to unwind
มุมมอง 1621 วันที่ผ่านมา
RDRT2 - Shawn Walsh
RDRT1 QUICK CLIP #2 - Cory
มุมมอง 1921 วันที่ผ่านมา
Sanfilippo dad Cory Hooks sprung into panic mode when his son Trent had his first seizure
RDRT1 QUICK CLIP #3 - Mike
มุมมอง 1321 วันที่ผ่านมา
Sanfilippo dad Mike Dobbyn wasn't able to take his kids kayaking this year
Full interview: "Does my child have Sanfilippo Syndrome?" Facebook group aims to help find answers
มุมมอง 63หลายเดือนก่อน
Erica McKenzie and Christin Ulrich - two Sanfilippo moms, from GA and FL, respectively - are the admins (and co-founders) of the private (but publicly searchable) Facebook chat group called "Does my child have Sanfilippo syndrome?". Along with Josephine Shamaly (who originally came up with the idea), the two women started the page earlier this year as a resource intended for anyone who has con...
Meet the moms behind the Facebook private group called "Does My Child Have Sanfilippo Syndrome?"
มุมมอง 22หลายเดือนก่อน
Erica McKenzie and Christin Ulrich - two Sanfilippo moms - are the admins (and co-founders) of the private (but publicly searchable) Facebook chat group called "Does my child have Sanfilippo syndrome?". Along with Josephine Shamaly (who originally came up with the idea), the two women started the page earlier this year as a resource intended for anyone who has concerns that their child might h...
3 Sanfilippo moms started up the 'Does My Child Have Sanfilippo Syndrome?' page. Here's the story.
มุมมอง 15หลายเดือนก่อน
Sanfilippo mom Erica McKenzie (from Georgia) explains how the page came to be.
Trying to recognize Sanfilippo Syndrome in an undiagnosed child from facial features alone (Don't!)
มุมมอง 32หลายเดือนก่อน
"It's not just about the facial features, it's about the symptoms too" - Sanfilippo mom Christin Ulrich explains that one of her roles in the 'Does My Child Have Sanfilippo Syndrome' group is to remind concerned parents that there's more to Sanfilippo than just the unique facial features.
Sanfilippo moms who started 'Does My Child Have Sanfilippo Syndrome?' group all work in healthcare
มุมมอง 23หลายเดือนก่อน
Erica McKenzie and Christin Ulrich talk about their professional/medical backgrounds and why that experience has brought additional value and credibility to the group.
Meet Tara Shuman - cancer survivor, writer, advocate and educator
มุมมอง 32หลายเดือนก่อน
Tara Shuman's cancer-survivor journey began with a devastating triple-negative diagnosis 12 years ago. And despite a mere 2% survival rate (at that moment in time) for her specific breast cancer diagnosis, she survived. She continues to fight and advocate for the breast cancer community every day. Now she's on a mission to teach and mentor others to find the courage and fortitude - and a let's-...
Building anti-fragility and bouncing back stronger - Tara Shuman shares her thoughts and experiences
มุมมอง 16หลายเดือนก่อน
Building anti-fragility and bouncing back stronger - Tara Shuman shares her thoughts and experiences
A conversation with Sanfilippo mom and advocate Brittany Lagarde, discussing eye-gaze communication
มุมมอง 363 หลายเดือนก่อน
A conversation with Sanfilippo mom and advocate Brittany Lagarde, discussing eye-gaze communication
Wisconsin girl with Sanfilippo Syndrome regains voice through eye-gaze communication technology
มุมมอง 223 หลายเดือนก่อน
Wisconsin girl with Sanfilippo Syndrome regains voice through eye-gaze communication technology
"What do children with Sanfilippo Syndrome actually die from?"
มุมมอง 1383 หลายเดือนก่อน
"What do children with Sanfilippo Syndrome actually die from?"
Jessica Haywood is not only a super-involved Sanfilippo aunt, but she's also on the board of CureSFF
มุมมอง 1383 หลายเดือนก่อน
Jessica Haywood is not only a super-involved Sanfilippo aunt, but she's also on the board of CureSFF
Jessica Haywood, aunt of Sadie, talks about the early years of her friendship with Ashley Haywood
มุมมอง 2443 หลายเดือนก่อน
Jessica Haywood, aunt of Sadie, talks about the early years of her friendship with Ashley Haywood
Ashley Haywood had an easy pregnancy, and then Sadie Rae was born. She had no idea what awaited her.
มุมมอง 2293 หลายเดือนก่อน
Ashley Haywood had an easy pregnancy, and then Sadie Rae was born. She had no idea what awaited her.
"Purpose is a powerful thing" - Sanfilippo aunt (to Sadie Rae), Jessica Haywood
มุมมอง 1073 หลายเดือนก่อน
"Purpose is a powerful thing" - Sanfilippo aunt (to Sadie Rae), Jessica Haywood
Ashley Haywood and family flew to SC to meet the Cure Sanfilippo Foundation after Sadie's diagnosis
มุมมอง 1623 หลายเดือนก่อน
Ashley Haywood and family flew to SC to meet the Cure Sanfilippo Foundation after Sadie's diagnosis
Shortly after Sadie was diagnosed with Sanfilippo Syndrome, her mom and aunt took to social media
มุมมอง 3493 หลายเดือนก่อน
Shortly after Sadie was diagnosed with Sanfilippo Syndrome, her mom and aunt took to social media
Sanfilippo mom Ashley Haywood on her daughter's clinical trial, and the toll it took on her marriage
มุมมอง 3313 หลายเดือนก่อน
Sanfilippo mom Ashley Haywood on her daughter's clinical trial, and the toll it took on her marriage
Haywood girls talk about challenges of growing the Saving Sadie Rae page as the disease progresses
มุมมอง 1233 หลายเดือนก่อน
Haywood girls talk about challenges of growing the Saving Sadie Rae page as the disease progresses
Leaning on the Sanfilippo community during times of harrowing medical situations
มุมมอง 193 หลายเดือนก่อน
Leaning on the Sanfilippo community during times of harrowing medical situations
SFP founder Mike Dobbyn talks to Mike Schmanske of Prognosis Innovation about upcoming project
มุมมอง 154 หลายเดือนก่อน
SFP founder Mike Dobbyn talks to Mike Schmanske of Prognosis Innovation about upcoming project
PA Sanfilippo dad Mike Dobbyn meeting Brooklyn (NY) Sanfilippo mom Jill Wood, in June 2019.
มุมมอง 994 หลายเดือนก่อน
PA Sanfilippo dad Mike Dobbyn meeting Brooklyn (NY) Sanfilippo mom Jill Wood, in June 2019.