Rallying Support to Raise Awareness and Find a Cure for Sanfilippo Syndrome

My daughter Abby has Sanfilippo syndrome, a rare and terminal disease with no cure. Every year my husband, Jeff, my other daughter Emily, and I host a 5K walk/run in our hometown of Houston, Texas. We want to do what we can to increase awareness of Sanfilippo and raise money for treatments and a cure.

We created a group called Abby’s Alliance composed of our family and friends. Abby’s Alliance has been tremendously supportive. It has grown because loving people have spread the word, and some don’t even know Abby personally. They all want to help in some tangible way. They show up at the walk, wear the T-shirts, and spread the word about Abby.

The event always renews my faith in humanity. Our current social climate can be so negative and self-serving. We all get so busy and caught up with our own personal situations that it can be hard to step away from our daily lives and focus on someone or something else. Every year, that is exactly what 100-150 people do for us at our event.

People are good. That is the simplest way to say how I feel when talking about Abby’s Alliance. You ask others for what you need, and they provide it. It’s not always money — it may be listening or talking or prayers from near or far.

The group brings people out of their comfort zones, too. Many people do not like talking to someone whose child is dying. It is truly a parent’s worst fear. Most don’t know what to say, as I have written about previously. But as I mentioned, being ignored is the opposite of a helpful response. Just showing up is almost all that is needed.

Sanfilippo syndrome is a cruel disease that takes too many lives. We must do what we can to spread awareness of it and hopefully find treatment options and ultimately a cure. Forming Abby’s Alliance and hosting our annual 5K walk/run is our way of trying to make this happen. We are so thankful to everyone who has ever donated, attended, or even talked to us about Abby. Every little conversation matters because Abby matters. Thank you to everyone for showing us that she matters to you, too.

If you are in the Houston area and would like to join us on Saturday, March 14 from 8 a.m.-12 p.m. at Memorial Park, you can register to attend the walk at abbysalliance.com. You can also donate to the event via the same link.

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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 Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.