They left this world ……
We have just heard, with great grief, about Abdulaziz’s passing.
Born in Yemen, he was able to emigrate to Canada with all his family.
He was 11.
May he Rest in Peace.
New Patients, News from Families
Aaxel, Javiel, Lylio, Yamani, Ovinga, Mina, Gisely, Thomaz and Alice have recently joined us.
We are now in contact with 540 patients and families. Their isolation and loneliness facing Cutis Laxa has disappeared.
Welcome to all of you.
We are glad you joined the Big Cutis Laxa Family.
NEW MEMBERS
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.
THEY LEFT THIS WORLD
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.
NEW MEMBERS
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.
New Patients
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.
GOOD-BYE
Time to go home….. It is so hard to leave each other.
Longing to meet again ……. Roll on the 7th Days …
20 YEARS AGO ……
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
6th CUTIS LAXA DAYS
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