Run, Walk & Roll for Malan Syndrome 2026
- Date Wed 19th August 2026 - Wed 30th September 2026
- Location Anywhere, New Jersey
- Price $32.80
- Races 1 race
- Distances 5km
Event summary
Get ready to lace up your sneakers for the 6th annual Run, Walk & Roll for Malan Syndrome, taking place from August 19 to September 30, 2026, in beautiful Miami, Pinal. This exciting virtual 5K event invites participants from around the globe to join in a fun and meaningful way to raise awareness and funds for the Malan Syndrome Foundation. Our goal is to raise $100,000 to support vital research that enhances the understanding of Malan Syndrome and accelerates treatments for affected children.
Malan Syndrome is a rare genetic neurodevelopmental disorder that impacts approximately 400 individuals worldwide, with many more likely undiagnosed. By participating in this event, you help shine a light on this condition and contribute to groundbreaking research. Every dollar donated goes directly to this important cause, so whether you choose to run, walk, or roll, your efforts will make a significant difference. Join us in this uplifting journey to promote awareness and support those impacted by Malan Syndrome!
Malan Syndrome is a rare genetic neurodevelopmental disorder that impacts approximately 400 individuals worldwide, with many more likely undiagnosed. By participating in this event, you help shine a light on this condition and contribute to groundbreaking research. Every dollar donated goes directly to this important cause, so whether you choose to run, walk, or roll, your efforts will make a significant difference. Join us in this uplifting journey to promote awareness and support those impacted by Malan Syndrome!
Organiser's Description
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
*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.
---------------------------------------------------------------------------------------------------------------------------------------------------------------
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
Races
-
Run, Walk & Roll Virtual Registration $30 USD
Incl. $2.80 Fee
$32.80
CLOSED$30USD registration fee. *All pricing is in USD*
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Anywhere in the world!, Anywhere, 00000, NJ, United States
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Run, Walk & Roll for Malan Syndrome 2026
