Skip to main content

Run, Walk & Roll for Malan Syndrome 2024

Mon August 19 - Sun September 8, 2024 Anywhere, NJ 00000 US
S
Team Fundraiser

Sugar Land Swifties
Move for Malan

Fundraiser Login
Donate Today Join

$3,571

Raised of $5,000

$0
$5,000

Run, Walk, Bike, Dance or Roll for Malan Foundation

Hi!  In honor of my sweet sister, Aashni, I would like to invite you to join me on a Run, Walk, Bike, Dance or Roll event on Sunday, September 1st at 8:30AM at the Sugar Land Memorial Park Pavilion (Lakeside) benefiting the Malan Syndrome Foundation.  

After so many medical tests, Aashni was finally diagnosed Malan Syndrome last summer.  With your support at the event, our hope is to raise awareness about this rare genetic disorder so that Aashni and other Malan Sunflowers like her can grow in a world where they feel accepted and loved and reach their full potential.  The funds raised through this event will directly support research investigating the underlying causes of Malan syndrome and finding a treatment.   

I’m always inspired by her hard work towards her goals and her own Swifty ways of loving life and spreading happiness despite of the challenges she faces. 

Donate to Team SLSwifties: https://runsignup.com/SLSwifitiesMSF

Even if you are unable join us and Move for Malan with the Sugar Land Swifties, I hope you will still consider donating.

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

a team and help us grow hope for Malan syndrome. 

Top Donors

$3,571 Raised By 47 Donors

$500 from Anonymous
$250 on behalf of ATX Swifties
$200 on behalf of Super fans Elise and Owen Scott
$150 on behalf of Lynn Rossetto
$101 on behalf of Jatin and Neha Shah
$101 on behalf of Jayendra Parikh
$101 from Anonymous
$101 on behalf of Sameer Sheth
$100 on behalf of Avni Shah
$100 on behalf of Jamuna & BN Murali
$100 on behalf of Keep reading!
$100 on behalf of Lauren & Jake
$100 on behalf of PARUL MEHTA
$100 on behalf of Sheth family
$100 from Anonymous
$100 on behalf of Trusheet Kothari
$75 on behalf of Jennifer & Lulu
$51 on behalf of Jigisha Doshi
$51 on behalf of Shobha & Krish Ravishankar
$50 on behalf of Ashley McMenamy
$50 on behalf of Binal Kancherla
$50 on behalf of Erin Chang
$50 on behalf of Georgia Bowser
$50 on behalf of Lesley Chong
$50 on behalf of Minal Thakkar
$50 on behalf of Moses & Sophia Kaithakottil
$50 on behalf of Nidhy Varghese
$50 on behalf of Nithya Giridhar
$50 on behalf of Rajan Popat
$50 on behalf of Ruchira Damani
$50 on behalf of Sandeep Shah
$50 on behalf of Sema & Shalin Patel
$50 on behalf of Supriya Nair
$50 on behalf of Tushar Dharia
$40 on behalf of Mehta Family
$35 on behalf of Narahari Vittal Rao
$30 on behalf of Apurva , Mona and Rohan Parikh
$30 on behalf of Matthew Herrold
$30 on behalf of Samantha Lam
$25 on behalf of Atul Desai
$25 on behalf of Girish Kothari
$25 on behalf of Mona Desai
$25 on behalf of Naomi Guertin
$25 on behalf of Pretty Purbhoo
$25 on behalf of Urvi Shah
$20 on behalf of Ariyana Patel
$5 from Anonymous

Sugar Land Swifties Team Members

If you continue to use this site, you consent to use all cookies. We use cookies to offer you a better browsing experience. Read how we use cookies and how you can control them by visiting our Privacy Policy.

If you continue to use this site, you consent to use all cookies.