“Lincoln has a rare genetic disorder called MPS1”…There are treatment options, but there is no cure. This is a progressive disease, and it will have an effect on every major system within their bodies. Though this disease is labeled as “rare”, far too many parents have had to endure that phone call. Far too many families have had to face the reality of “no cure”. Our goal is to change that. We exist to provide HOPE (help one person everyday) to families facing MPS1. We believe with awareness com
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“Lincoln has a rare genetic disorder called MPS1”…There are treatmen…
333.1K views8 months ago
FacebookThe Kennedy Ladd Foundation, Inc.
Understanding MPS1 Syndrome and Hurler Syndrome
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85 reactions · 7 comments | MPS1 is a rare genetic disorder with no...
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85 reactions · 7 comments | MPS1 is a rare genetic disorder with no...
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FacebookThe Kennedy Ladd Foundation, Inc.
MPS1 is often hidden in the scars. So many MPS1 families have said one of the largest misconceptions is that because they received treatment they are now fine. While treatment does increase life expectancy and quality of life, it does not cure the disease. It does not stop the progression completely. This is why a kind word, patience, and showing you care is so important to MPS1 families.🤎 Follow us for more! | The Kennedy Ladd Foundation, Inc.
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MPS1 is often hidden in the scars. So many MPS1 families have said …
282.7K views9 months ago
FacebookThe Kennedy Ladd Foundation, Inc.
When you are faced with an MPS1 diagnosis, it can be hard to know what to do next.... Our advice? Get educated! In our YouTube video "Don't Google It" we aim to provide hope to MPS1 families. You can find this video on the Kennedy Ladd Foundation Youtube! Or at this link https://youtu.be/_BbICEZ9y9k?si=f_qpq6thdRUqHYMJ | The Kennedy Ladd Foundation, Inc.
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FacebookThe Kennedy Ladd Foundation, Inc.
Family's Journey with Rare Disease, MPS1 Hurler Syndrome Explained
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