One Drop Can Make an Impact: The Importance of Spreading Awareness

Emily Wallis avatar

by Emily Wallis |

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reality of Sanfilippo syndrome | Main graphic for column titled

My favorite animals are sharks. They’ve always fascinated me. An interesting fact I’ve learned is that sharks can smell blood in very small concentrations in water — as low as one part per million!

As I contemplated this column, this shark fact, a Sanfilippo event I attended last month, and the weird way they connect stuck out in my mind. 

One weekend in June, a couple friends and I attended an event in The Woodlands, Texas. It was held by another Sanfilippo family that is very close to my family. People walking around the outdoor mall could stop to get a lemonade from their stand and learn about Sanfilippo syndrome.

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After we got our drinks, we stood around and watched as people drank their lemonade and asked questions about the disease.

The merchandise at the event caught my eye and made me think of our own. My family and I created Abby’s Alliance after my sister’s diagnosis, and many of our family members and friends wear our bracelets and T-shirts, which we also sell at our events.

On the surface, the shirts and bracelets are fantastic for showing support. It gives me chills to think about the sea of purple that floods the park at our Abby’s Alliance walks every year. But at this event, I watched as people took bracelets and continued their conversations as they moved past the lemonade stand.

On my drive home, I thought more about this. One person will wear that bracelet to work or the doctor’s office, and someone else will ask about it. They will go home and tell their family. Someone may wear their Abby’s Alliance shirt to the grocery store and the person standing behind them at the checkout might use their downtime to look up Sanfilippo syndrome on their phone.

It may be one drop, but like a shark smelling blood in the water, it’s enough to make an impact.

Every column, website, Facebook page, and TikTok account is crucial to spreading awareness of this disease. T-shirts and bracelets are just two ways that one person can reach one million people.

It’s easy to feel helpless, as if you are fighting a losing battle, when faced with a disease like Sanfilippo. But every bit of awareness reminds other Sanfilippo families that they are not alone, just like I experienced at this event.

Share a video. Attend an event. Read an article. Through bracelets and lemonade, our voices can reach people everywhere.


Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


Theresa Sampu avatar

Theresa Sampu

I have a daughter Kelcey who is 28 and has sanfilippo type b this was just what I needed this morning thank you


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