555
That’s the number of patients who joined CLI, with the new members Kim, Tigui-Jamilah, Clare, Ali et Yassin, Isla, Marie-Astrid and her brother, Soumaya, Jonas et Goundoba.
Welcome to all of you. We are happy you found and joined us.
Our Big Cutis Laxa Family is here to help you, support you and answer your questions.
It is with deep sorrow that we learned that Chiara, in Italy, and Dave, in UK, passed away.
For both of them, lung issues due to Cutis Laxa got the better of their energy and will to fight. Chiara was supposed to attend the Days in Ghent and Dave had attended the Days in Annecy. We send their families our thoughts and condolences, as well as lots of courage to face this hard time.
Mc Kenna Rose, Magali, Ezra, Hudson, Amelia, Maui Rose, Julie, Lennox, Aaxel, Eric and Harlyn joined us since the biginning of the year. A new country was added : Dominican Republic
There are now 533 patients gathered together and allowed to share their distress, their questions, but also their challeneges and successes living with Cutis Laxa. We are here to help them.
I am so very sad to announce that Eric MOLINIE left this world on 21st December 2022.
Eric was former chair of AFM-Téléthon in France. He was himself diagnosed with Duchenne Myopathy.
He is the one who made it possible for Cutis Laxa to be known and research be done.
We had explained to Eric that without enough known patients research would never be done on such a rare disorder. He had promised that if we knew at least 10 patients, AFM-Généthon would start a research.
In december 2001, Cécile took part in the French Téléthon for the second time. At that time, we knew of 9 patients in France and abroad. Cutis Laxa International was just 1 month old, being set up on 11th November 2001.
We were on stage, live, explaining that 10 patients were needed, at least, to start a research, when Eric quickly rolled his wheelchair to join us, saying that a 10th patient had called the AFM and that, keeping his promise, Genethon will start a research project.
And on February 2002, it started.
We were all crying on stage. And still today, 20 years later, this memory brings me tears and shivers.
Thank you Eric, Without you the 520 patients we know of today would not have research going on giving them hope for the future.
Thank you Eric, for staying faithfully at our side during all these years.
Rest In Peace dear Friend
Cutis Laxa Internationale now gathers 517 patients coming from all parts of the world:
Stacy, Amber, Ayse, Celia, Deacon, Emmy, Scott, Anna, Em, Amelie, Patricia, Yousef, Nora Grace, Warisha and Nicole joined us since our last newsletter.
Our Big Cutis Laxa Family is glad to welcome them and give them all the help and support they need.
Very sadly I need to let you know that two of our members passed away : Anaaya, 3 ½ , in India and Dominique, 51, in France. Again, we send our deepest condolences to their families. May they Rest in Peace.
Cécile was diagnosed in 1992.
8 years later, she appeared for the first time on TV screens.
On 11th November 2001 we set up Cutis Laxa Internationale. But there was no research programm. We knew of 9 patients.
One month later, we appealled on TV screens during the Telethon (Fudraising event). We needed a 10th patient for a research programm to be launched.
Annie Moissin, who was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happened next.
Thanks to you Annie,
Thanks to Solhand of which you are now the Chair.,
One can do nothing alone, Together we are stronger, we go further.
Marie-Claude Boiteux
Chair of Cutis Laxa Internationale, Cécile’s mother
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the University Hospital of Ghent( Belgium)
on 14th, 15th and 16th September 2022
