Run, Walk & Roll for Malan Syndrome
About this race
Join us for our 6th annual Virtual 5K benefiting the Malan Syndrome Foundation. Help us reach our fundraising goal of $100,000USD!
*All pricing is in USD*
Every dollar donated will go directly to research that will improve the understanding of Malan syndrome and accelerate treatments for our children.
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What is Malan syndrome?
Malan syndrome is a rare, genetic neurodevelopmental disorder caused by a mutation in the NFIX gene on chromosome 19. The NFIX gene is a protein-coding gene that plays an essential role in brain and musculoskeletal development. Currently, there are only ~400 people in the world diagnosed with Malan syndrome. However, it is estimated that thousands of people with the disorder remain undiagnosed.
The clinical features of Malan syndrome vary but may include:
-Tall and thin stature
-Macrocephaly (large head size)
-Distinct craniofacial features
-Intellectual disability
-Hypotonia
-Speech delay
-Vision and/or hearing impairment
-Seizures
-Skeletal anomalies, including scoliosis
-Chiari malformation
-Connective tissue disorder
-Joint hypermobility
-Sleep disturbances
-Behavioral challenges
Would you like to sponsor this event and have your logo on our website? Please send an email to info@malansyndrome.org
Join fellow runners on August 19, 2021 for the Run, Walk & Roll for Malan Syndrome. It's a fantastic 5K, Basic Registration-- $20 USD featuring a flat and fast course in Anywhere.
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Running
T-shirt Registration (Shipping to US only)-- $35
This Registration includes: -An event T-shirt -A printable runners bib
Basic Registration-- $20 USD
This registration includes: -a printable runners bib **This registration DOES NOT include a T-shirt **
About Anywhere
Run, Walk & Roll for Malan Syndrome takes place in Anywhere, United States.
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Race information has been sourced from the event's official website and other publicly available resources. For the most up-to-date details, please refer to the official website directly. If you notice any incorrect or missing information, don't hesitate to reach out to us by email.