Run, Walk & Roll for Malan Syndrome 2026
- Date Wed 19th August 2026 - Sat 12th September 2026
- Location Virtual Event
- Price $32.80
- Races 1 race
- Distances 5km
Just added
Secure your place early
Event summary
Get ready to lace up your shoes and make a difference at the 6th Annual Run, Walk & Roll for Malan Syndrome! This inspiring virtual event takes place from August 19 to September 12, 2026, in beautiful Miami, Pinal. Participants can take part in a 5K, engaging in a fun and meaningful way to support the Malan Syndrome Foundation. Our goal is to raise $100,000, with every dollar going directly to vital research that enhances the understanding of Malan syndrome and accelerates treatments for affected children.
Malan syndrome is a rare genetic disorder impacting brain and musculoskeletal development, and currently, only about 400 individuals worldwide are diagnosed. By joining us, you can help shine a light on this under-recognized condition and support families in need. Whether you're running, walking, or rolling, your participation will have a lasting impact. Don't miss your chance to contribute to a brighter future for those affected by Malan syndrome!
Malan syndrome is a rare genetic disorder impacting brain and musculoskeletal development, and currently, only about 400 individuals worldwide are diagnosed. By joining us, you can help shine a light on this under-recognized condition and support families in need. Whether you're running, walking, or rolling, your participation will have a lasting impact. Don't miss your chance to contribute to a brighter future for those affected 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.
---------------------------------------------------------------------------------------------------------------------------------------------------------------
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
$30USD registration fee. *All pricing is in USD*
Reviews
Done this event?
First-hand event reviews from people who have been there, done that and got the breathable T-shirt, really help everyone choose their next event.
Add a reviewWho's In
See who else is doing this event
Be the first
No-one has marked this event as 'Doing' or 'Maybe' yet. Will you be the first?
Run, Walk & Roll for Malan Syndrome 2026
