"does my child have sanfilippo syndrome?" a new facebook group started by 3 sanfilippo moms helps other parents find those answers

​Erica McKenzie and Kristen Ulrich - two Sanfilippo moms - are the admins (and co-founders) of the private (but publicly searchable) Facebook support/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 out there who has concerns that their child might have Sanfilippo Syndrome - a disease which has in recent years garnered greater attention and awareness due to the power of social media (and brave parents). Here they tell us the story of how the page came to be - and why they're determined to help other parents out there find answers and perhaps even a new support system along their own journeys.    

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First, let's meet the two moms. They introduce themselves here (1 minute clip):

Next, check out this clip of Erica, explaining how the group came to be and how it's managed and administered on a daily basis:

We were getting requests constantly (in our Sanfilippo parents group) from concerned parents out there who thought their child might have Sanfilippo Syndrome. It was becoming overwhelming, and one day Josephine (Shamaly) came to me and asked, 'what do you think about starting a new group?'.  And I said, 'let's give it a shot'."   - Erica McKenzie (from GA), Sanfilippo mom to daughter Reagan

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Now let's hear from Christin, who explains that there's much more to Sanfilippo Syndrome than just the bushy eye brows...

It's not just about the unique facial features, but the symptoms too"  - Christin Ulrich (from Florida), Sanfilippo mom to daughter Veda

None of these moms are medical doctors - and they make that loud and clear on the site - but they do all work in the healthcare space.  Hear them talk about that experience and why it's helpful in their role as admins for the 'Does My Child Have Sanfilippo?' page...

The three of us all have professional backgrounds in the healthcare sector and have worked directly with doctors in those roles as well"  - Erica McKenzie

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To watch the full interview, click below: