Run, Walk & Roll for Malan Syndrome 2025
- Date Tue 19th August 2025 - Tue 30th September 2025
- Location Virtual Event
- Price $32.80
- Races 1 race
- Distances 5km
Event summary
Get ready to lace up your running shoes for the 5th annual Run, Walk & Roll for Malan Syndrome, taking place from August 19 to September 30, 2025, in beautiful Miami, Pinal! This exciting virtual 5K event invites participants from all over to join in and help raise awareness and funds for the Malan Syndrome Foundation, with a goal of reaching $100,000 USD. Every dollar raised will support critical research aimed at improving the understanding and treatment of Malan Syndrome, a rare genetic neurodevelopmental disorder that affects only about 400 diagnosed individuals worldwide.
Whether you’re a seasoned runner, a casual walker, or someone who prefers rolling along, everyone is encouraged to participate in this heartwarming event. By taking part, you’ll not only contribute to a worthy cause but also connect with a community dedicated to making a difference for children affected by Malan Syndrome. Mark your calendars and join us in this uplifting journey to support vital research and enhance the lives of those impacted by this condition!
Whether you’re a seasoned runner, a casual walker, or someone who prefers rolling along, everyone is encouraged to participate in this heartwarming event. By taking part, you’ll not only contribute to a worthy cause but also connect with a community dedicated to making a difference for children affected by Malan Syndrome. Mark your calendars and join us in this uplifting journey to support vital research and enhance the lives of those impacted by this condition!
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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