18/04/2025
⭐ 𝐍𝐞𝐰 𝐡𝐨𝐩𝐞 𝐟𝐨𝐫 𝐜𝐡𝐢𝐥𝐝𝐫𝐞𝐧 𝐰𝐢𝐭𝐡 𝐌𝐕𝐈𝐃 (𝐌𝐢𝐜𝐫𝐨𝐯𝐢𝐥𝐥𝐮𝐬 𝐈𝐧𝐜𝐥𝐮𝐬𝐢𝐨𝐧 𝐃𝐢𝐬𝐞𝐚𝐬𝐞) ⭐
MVID is a severe and ultra-rare genetic disorder of the digestive system, where the intestine is unable to absorb nutrients.
To survive, children with MVID depend on parenteral nutrition — receiving vital nutrients through a central venous catheter directly into their bloodstream.
But while essential, this life-sustaining treatment can lead to serious complications: infections, liver failure, and sadly, sometimes death.
⚠️ There is still no cure.
That’s why Cure MVID Association, in partnership with LHF Espoir is proud to support a concrete and promising research project: we have committed €130,000 to fund the development of an oral mRNA therapy aiming to restore Myo5B, the key protein that is defective in most MVID patients.
This cutting-edge project is led by Virginie Escriou and PhD student Ganesh Mamodaly at the UTCBS CNRS-Inserm-Université Paris Cité lab in Paris.
🧬 Their work could pave the way for the first therapy to treat the root cause of MVID, by restoring normal function in intestinal cells.
💙 From the bottom of our hearts, we want to thank all our generous donors, as well as Shemine Asmina and the entire LHF Espoir community, whose commitment and support made this collaboration possible.
Without your support, we simply could not fund such ambitious and concrete research aimed at curing MVID.
We also want to thank UTCBS CNRS-Inserm lab and particularly Virginie Escriou and Pascal Bigey to believe in this project.
Together, we are giving hope — and building a future — for children living with this devastating disease.
If you want to learn more about the disease, the project and the association please visit our website at https://curemvid.com/
