Good-Bye ERIC

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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

Welcome

New Patients

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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

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Time to go home….. It is so hard to leave each other.

Longing to meet again ……. Roll on the 7th Days …

Welcome

NEW CONTACTS, NEW FAMILIES

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Cutis Laxa Internationale now gathers 501 patients coming from all parts of the world:

Kim, Amina, Nura Bay, Linda, Dawson, Riley, Cecelia, Rai, Sutton, Bodhi, Katia, Heather, Inter, Melany and her daughter Lilian, Husseini, Xenia as well as Samardashi, Arthur, Stacy, Amber and Ole joined us lately.

Our Big Cutis Laxa Family is glad to welcome them and give them all the help and support they need.

Welcome

Our « Big Cutis Laxa Family » grows day after day.

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Its new members : Joanna, Ayse and her two brothers, Delphine, Elizabeth, Adar, Aakshay, Fabricio, Solange, Andrea, Zahid, Dilsa, Jannae & Julia, Fatiha and her sister, MaryAnn come from Poland, Turkey, Canada, Saoudy Arabia , USA, Israel, Brazil, Italy, Colombia, France.

All around the world, 479 patients are now part of our Cutis Laxa patients’ community.

 

On 27th May I heard with deep sorrow about Maddie’s passing. She was  19 months old. I had talked a lot with her mother during her long stay in hospital. Rest in peace sweet angel, your pain has disappeared.

Welcome

New Members, News from the Families

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Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne, Richelle and 4 members of her family, James and Charles, Ehran, Lisa, Emam are new members of the big Cutis Laxa family.

 

We are now 466 patients and their families, coming from all parts of the world. We are united and we get our voices heard. We support each other. And as the Rare Disease Day motto declares: « We are RARE, we are STRONG, we are PROUD

20 YEARS AGO ……

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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

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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

 

Welcome

NEW MEMBERS, NEW FAMILIES

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Caetano, Tamapa, Defne, Tami,Yusuf, Tracey, William, Atay Robin, Sunusi, Hanna, Umar, Jo, Sarah, Talita, Randi, Carol, Eli, Gina, Sonia, Maria, James, Ayyaz, Mariya and Oluhle have joined us since the beginning of 2020.

 

Koweit, Dubai, Sierra Leone, Nigeria and South Africa are the additional colors on our map of world..

 

We now gather together 440 patients worldwide. Of them, 18,6 % have a Dominant type (ADCL) , 17,1 % a Recessive type (ARCL), 22 % an Acquired one and 40% do not know, or not yet, their exact type. The other types (MACS, OHS, GO,…) represent 2,3% of the total.