the Association
A MIRACLE FOR NOAH
A MIRACLE FOR NOAH is a non-profit French association, law 1901, intended to fight against Adams Oliver syndrome.
Birth of the Association
On November 7, 2012 at 12:30 a.m., Laetitia, Noah's mother, posted a cry of distress on Facebook:
“Help me, no one wants to operate on my son, I don’t know what to do.”
Quickly, a surge of solidarity formed around Noah and his family. The Facebook group “For little Noah” is created.
Noah, 18 months old, appears in good health despite a bandage on his head.
In reality, he suffers from the rare Oliver Adams Syndrome, with only 150 cases worldwide, Noah being the only one in France. He has a 5x7 cm hole in his skull and several vital abnormalities.
Despite the pessimism of specialists, Noah is developing normally. However, its brain is only protected by a thin skin, making a €1,600 helmet essential, to be renewed every 3 months. Donations poured in after a call to the group.
In March 2013, faced with medical inaction in France, Laetitia launched a second cry of warning. An article appeared in Le Parisien, attracting the attention of American surgeons. On the advice of another parent, Laetitia and Rudy created the association “A miracle for NOAH” on March 20, 2013.
Our Missions
The association's mission is to:
Raise awareness of Oliver Adams syndrome, from which Noah suffers.
Come out of isolation.
Finance:
Medical examinations and operations not covered.
Care abroad.
Transport and accommodation when traveling.
A national and international research protocol.
Meet the specific needs linked to their disability and illness, in particular:
The layout of living spaces (safety equipment, etc.).
The purchase of educational and teaching materials.
The purchase of non-reimbursed medical, pharmaceutical or hypoallergenic equipment.
Advise and guide children with Adams-Oliver syndrome and their parents in their efforts.
The Association finances the first genetic research in France on Adams Oliver Syndrome
with the IMAGINE INSTITUTE - PARIS NECKER
Help us
Would you like to support A Miracle for Noah in his fight against Adams Oliver Syndrome?
Here's how :
Make a donation
The association does not receive any subsidies and depends entirely on your donations for its awareness-raising actions and financial support for research projects. Thank you for your generosity.
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BECOME A VOLUNTEER
Join our team of volunteers and contribute your time, experience and skills. Whether you are available occasionally or regularly, every contribution counts. We adapt to your availability and provide the necessary support for the success of your activities.
To become partner
Businesses can play a crucial role in helping us raise awareness about Adams Oliver Syndrome. Share your communication spaces, inform your employees, and support us financially or with services (printers, transporters, computer equipment, etc.). Together we can make a difference.
Contact us for more information and to share your collaboration ideas.
The Gala Dinner
in favor of the association
"Un Miracle pour Noah"
December 14, 2016 at 8 p.m. at the JR Royal Palace Salon in Joinville-Le-Pont
In partnership with the events agency “Sensation”, the association
“A MIRACLE FOR NOAH” organized its 1st Charity Gala, to benefit Medical Research into Adams-Oliver Syndrome.
Many artists such as Eric from the Prestige Group, MisterDan, Myriam Abel , JP Savelli , Sofiane, HMCEE DA DUKE and many others came together to host this evening around a dinner concocted by the caterer "Prestige de Longchamp".
Dr Genevieve Baujat from the Molecular Genetics Laboratory intervened to present to you the challenges of this medical research.
All profits from this evening were used to finance research into Adams Oliver Syndrome in partnership with the Imagine Institute at Necker Hospital.
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