Laura Frassi's Fundraiser
Help Cure LBSL for Carolina and other kids around the world!
Join me and help make a difference, please give today!
Maria Felice
"Per Carolina"
$700
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Daniele Masi
"Vi vogliamo bene"
$100
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Daniela D’Agostino
I donated in support of this campaign.
$50
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Guido Ravasio
I donated in support of this campaign.
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Michela Barbetti
I donated in support of this campaign.
A supporter of Laura Frassi
I donated in support of this campaign.
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Alice Clarini
I donated in support of this campaign.
$50
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Marco Mauriello
"Hope for the best"
A supporter of Laura Frassi
I donated in support of this campaign.
Nearly five years ago, our daughter, Carolina, who was 1 year old at the time, was diagnosed with LBSL — a rare neurodegenerative disease that affects the brain and spinal cord and slowly robs children of their ability to walk. And yet: Carolina continues to dazzle doctors, therapists, family and friends with her progress. She continues to walk and we are blessed beyond all measure.
But #timeismyelin and being LBSL a neurodegenerative disease we need to help the amazing researchers at the Kennedy Krieger Institute in Baltimore who are currently navigating different routes to find a cure (genetic therapy and drug reposition).
Cure LBSL has connected us with families, resources and hope, and is funding research into two promising gene therapies to stop this disease in its tracks.
Whether you've been with us on our rare disease journey from the beginning or you're just learning about it — whether you've donated in the past or are just thinking about it now — thank you for being here with us!
September 20 is LBSL Awareness Day:
- Less than 300 people in the world have LBSL
- Most doctors have never even heard of LBSL
- LBSL kids and adults sometimes need special care and accomodations at school and work to keep them safe
- LBSL knows no geographical boundaries
Thanks to Cure LBSL no patient has to navigate this alone. If you can help towards the difficult route leading to a cure, we and the LBSL families around the world will be forever grateful.
Laura, Filippo, Carolina & Annalucia