CureCLCN4Alessia

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Team fundraiser1 membersCure CLCN4
US$2,642
raised of US$5,000 target
Event: 60x60 challenge, from 15 September 2021 to 15 November 2021
Join us on our journey to find a cure for CLCN4 by donating or fundraising today! Our goal is to raise £50,000 to create a CLCN4 disease model, which is essential for kickstarting scientific research into CLCN4. Together, we can make a difference!

Story

Hello,

My name is Rocco, I am a high school physical education teacher in Brooklyn, NY, and I would like to share a story about my 6-year old daughter Alessia. In 2018, Alessia was diagnosed with a rare genetic condition called CLCN4. CLCN4 primarily causes intellectual disability, epilepsy, speech delay, and certain types of behavioral and movement disorders mostly in younger children. When our family first learned about this diagnosis, we were told by medical professionals that CLCN4 was so rare, it only affected 15 other children worldwide. Today, that number has risen to a little over 100. Currently, there is no cure for CLCN4, however, a new charitable organization called 'CureCLCN4' has begun, and its mission is to provide support for families, raise awareness, increase funding for medical research, develop effective treatments, and ultimately, find a cure for CLCN4. Hence, our family would like to ask for your help and support and become a part of our team by spreading the word, kindly donating, and also participate in a 60-day fundraising activity called 'CureCLCN4Alessia.'

The goal of this endeavor is to raise $1000+ and also participate in a voluntary 60-day fitness challenge. The challenge is to complete 60-miles of walking or running within 60-days. CureCLCN4Alessia will officially began on Wednesday, September 15, 2021 and conclude on Monday, November 15, 2021.

Please note that CureCLCN4 is a UK registered charitable organization. You can find more information by visiting its official website at cureclcn4.org. With your help and support, we can begin to take significant steps towards achieving that ultimate goal of finding a cure for Alessia and children like her.

Your contribution will undoubtedly make a significant, life-changing impact for all children in need and I would like to personally express my sincere gratitude and appreciation for your efforts.

Thank you again, and I wish you all a lifetime of health and happiness.

God bless.

Sincerely,

Rocco Rotondi

Team members (1)

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About the campaign

Join us on our journey to find a cure for CLCN4 by donating or fundraising today! Our goal is to raise £50,000 to create a CLCN4 disease model, which is essential for kickstarting scientific research into CLCN4. Together, we can make a difference!

About the charity

Cure CLCN4

Verified by JustGiving

RCN 1190344
We are a registered charity aimed at providing support, raising awareness and funding medical research for effective treatments for CLCN4, a rare genetic condition that causes intellectual disability and other problems such as epilepsy, behavioural disorders, movement disorders, and microcephaly.

Donation summary

Total raised
US$2,641.52
+ US$20.76 Gift Aid
Online donations
US$2,641.52
Offline donations
US$0.00

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