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Impatient
by Ronak Ahmadloo
200€ raised
Goal 500 €
I am impatient. While I may not be able to right all the wrongs in the world, I can take every step available in that direction.
There is also one step you can take. In this period of the year where we are all pushed to over-consumption, try something different: don't buy, instead donate for a cause you believe in.
If you don't have a particular cause in mind, here is one for you: Fondation 101 Génomes, supporting research against rare diseases. Because once they happen to you or someone you know, those diseases are not so rare anymore.
The foundation was established by the parents of one of our son's classmate. A little boy we often hear about, not because of his disease, but because of all the fun our son has with him. The disease could have touched our son - or yours.
We are all, we are one. I am impatient for the world to realise and start to act.
— Ronak
The Fondation 101 Génomes (F101G) is a patient-led initiative that aims to boost groundbreaking research in the field of rare diseases. F101G is hosted by the Fondation Roi Baudoin.
Our goal is to advance the understanding of the human genome to better treat rare diseases affecting children. We want to accelerate discoveries into new diagnostics tools and more efficient treatments.
To this aim, F101G is set to create a unique bioinformatic database that will unleash the full potential of genomics and artificial intelligence.
Our crowdfunding campaign “Impatient” wants to accelerate funding for research. We are “Impatient” because, when it comes to saving lives and improving the quality of life of people with a rare disease, there is no time to waste.
Gifts worth over 40 EUR are fiscally deductible.
Your money will help to support F101G’s pilot project, focused on Marfan Syndrome. Marfan Syndrome is a rare genetic connective tissue disorder affecting 1 in 5000 people. It’s a serious condition, which can be potentially life-threatening without an early diagnosis and medical treatment.
The pilot project aims to create a bioinformatic database crossing genotypic (Whole Genome Sequencing) data and detailed phenotypic (clinical) data from a cohort of patients holding the exact same mutation in FBN-1 gene. The ultimate aim is to understand the extreme variability in the symptoms of Marfan patients.
World-class medical scientists will have open access to this database. They will be able to launch algorithms designed to understand why some people display severe symptoms while others are only mildly affected by the mutation causing Marfan Syndrome. This discovery will allow scientists to develop accurate diagnostic tools and personalised treatments and cures for Marfan patients.
The project has galvinized support from the international scientific community. F101G’s scientific committee is formed by scientists from Antwerp University, UZ Gent, Erasme Hospital, Nijmegen, and Bichat Hospital.
Donations (2)
2 magic donors are supporting "Impatient"
100 €
Luc
— 4 years ago
100 €
Anonymous
— 4 years ago
Thank you for this fantastic text and your support!
The beneficiary of your donation is 101 Génomes, who will establish your tax return document. The transaction is managed by Stripe - payment solutions, implemented by Raise & Shine SCRL — developer and host of the website you are visiting right now.
That's fantastic ! Your donation makes a difference !
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