 Stacey Montgomery is the mother of Lucas (Sanfilippo Syndrome, type B), who passed away in 2018 just prior to his 21st birthday. She lives in Cedar Rapids, Iowa, and is a board member with the National MPS Society. Stacey and her family continue to share Lucas's story with others in the hopes of raising further awareness about the disease, as well as passing along her knowledge and experiences to other parents who now walk along a similar journey. Stacey is an inspiration and source of light to many in the Sanfilippo- and rare disease communities.  His story, and all of our stories… There’s a reason" To view the full conversation (April 2022), click here:
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"It's a family that nobody CHOOSES to be part of, BUT IT'S ONE YOU'RE GLAD TO HAVE IN YOUR CORNER"11/13/2023 Delaware dad Carl's two oldest sons were born with Sanfilippo Syndrome, aka Childhood Alzheimer's. In this clip, Carl reflects upon his own journey as a Sanfilippo father and the importance of connecting with other families in similar shoes. "It's a family that nobody chooses to be part of, but once you meet other folks going through exactly what you're going through, it's a family that you're glad to have in your corner", he says.  It's a family that nobody chooses to be part of, but once you meet other folks going through exactly what you're going through, it's a family that you're glad to have in your corner" |
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Mike Dobbyn, Archives
August 2024
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