Madeline’s Mission
Fighting for a cure with hope for our PKAN warrior
💫 Spreading love, strength, & awareness
At just six months old, our daughter Madeline was diagnosed with PKAN, an extremely rare and devastating neurodegenerative disorder that gradually takes away motor function, speech, and independence. There is no cure. What began as subtle stiffness quickly led to a diagnosis we never imagined facing as first-time parents.
Because PKAN affects fewer than one in a million children, research is limited and funding is scarce. That’s why we are launching Madeline’s Mission—to raise awareness and support the Loving Loic Foundation, a leading organization driving research, advocacy, and hope for families like ours. All donations will help fund critical medical research and bring us closer to clinical trials—and, we pray, a future cure.
❊ News Articles
Spreading the word
❊ FAQs
Frequently Asked Questions
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Pantothenate Kinase-Associated Neurodegeneration (PKAN) is a rare, inherited neurological disorder that causes the progressive loss of movement control. PKAN affects a part of the brain responsible for coordination and motor function, leading to muscle stiffness, difficulty walking, and challenges with speaking and swallowing. Over time, the condition becomes more severe. PKAN is extremely rare, affecting fewer than one in a million children, and currently has no cure.
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Every bit helps! Visit out Donate page for more information.
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Please email us at: madelinesmission24@gmail.com
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