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Knockout ALD: Run for ALD, Cure the Boys (5K/1 mile)

Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for the ALD Research Fund at the University of Minnesota. This year’s event will be in person and virtual, on November 20, 2021. Email Julie at with questions. Website:

ALSP Community Support Group Meeting


Sister's hope Foundation presents - ALSP Community Support Group Meeting (Guest Speaker: Cynthia Beers, – Owner at Red Head Yoga, Author of Mindful Yoga for Teen Anxiety & Mindful Yoga for Adult Anxiety)

Rare Disease Day

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

14th Congress of the European Paediatric Neurology Society (EPNS)

The EPNS Congress provides an opportunity to learn about the latest developments in the rapidly evolving field of child neurology, including basic science, diagnostic methods, and novel treatments. You can network with colleagues and industry partners all focused on delivering the best possible care for children with neurological disorders.

Leukodystrophy Awareness Month

September is Leukodystrophy Awareness Month!  A leukodystrophy is a type of disease that causes degeneration of the myelin, or "white matter" of the brain.  Every individual requires healthy production of myelin for speed and accuracy of nerve impulses within the brain.  Without a healthy myelin sheath, your nerves can’t send and receive signals properly.

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