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
Last chance to enter
Race day is fast approaching
Event summary
Get ready to lace up your shoes and join us for the 5th annual Run, Walk & Roll for Malan Syndrome, taking place from August 19 to September 7, 2025, in vibrant Miami, Pinal! This exciting virtual 5K event aims to raise awareness and crucial funds for the Malan Syndrome Foundation, with a goal of reaching $100,000 to support vital research for this rare genetic disorder. Every dollar you contribute will directly impact the lives of those affected by Malan Syndrome, helping to accelerate treatments and improve understanding of this condition.
Participants of all ages are invited to take part in this uplifting event, whether you choose to run, walk, or roll your way to the finish line. Together, we can make a difference in the lives of approximately 400 individuals diagnosed with Malan syndrome worldwide. Your involvement not only promotes fitness and community spirit but also supports a noble cause. Join us in making strides toward a brighter future for children and families affected by Malan Syndrome!
Participants of all ages are invited to take part in this uplifting event, whether you choose to run, walk, or roll your way to the finish line. Together, we can make a difference in the lives of approximately 400 individuals diagnosed with Malan syndrome worldwide. Your involvement not only promotes fitness and community spirit but also supports a noble cause. Join us in making strides toward a brighter future for children and families 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 ~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 [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 ~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 [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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