Run, Walk & Roll for Malan Syndrome 2025
- Date Tue 19th August 2025 - Sun 7th September 2025
- Location Virtual Event
- Price $32.80
- Races 1 race
- Distances 5km
Event summary
Get ready to lace up your shoes for the 5th annual Run, Walk & Roll for Malan Syndrome, taking place from August 19 to September 7, 2025, in beautiful Miami, Pinal! This exciting virtual 5K event is not just about staying active; it's a meaningful opportunity to support the Malan Syndrome Foundation in their mission to raise $100,000 for critical research. Every dollar donated will directly contribute to enhancing the understanding of Malan Syndrome and accelerating treatments for affected children.
Malan Syndrome is a rare genetic neurodevelopmental disorder, impacting only around 200 individuals worldwide, with many more likely undiagnosed. By participating in this event, you’ll be part of a community dedicated to making a difference. Join us in this uplifting journey, whether you choose to run, walk, or roll, and help spread awareness for this important cause. Together, we can create a brighter future for those affected by Malan Syndrome!
Malan Syndrome is a rare genetic neurodevelopmental disorder, impacting only around 200 individuals worldwide, with many more likely undiagnosed. By participating in this event, you’ll be part of a community dedicated to making a difference. Join us in this uplifting journey, whether you choose to run, walk, or roll, and help spread awareness for this important cause. Together, we can create a brighter future for those affected by Malan Syndrome!
Organiser's Description
Join us for our 5th 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 around 200 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 [email protected]
*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 around 200 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 [email protected]
Races
-
Run, Walk & Roll Virtual Registration $30 USD
Incl. $2.80 Fee
$32.80
$30USD registration fee. *All pricing is in USD*
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