The MSS newsletters contain a lot of useful and practical information about (research on) Marshall-Smith syndrome. Several families also share their life stories. Read the most recent versions here.

MSS newsletter april 2022

MSS News Report november 2022

 From 17 to 20 June 2022 the 7th MSS Family Event was held in 'De Kindervallei' in Valkenburg. And what a wonderful weekend we had! With a varied program, where meeting each other and with researchers was central. A unique opportunity to speak with other families, to share personal stories and experiences with each other and to hear more about the MSS research program. 

We are already looking forward to meeting the MSS families from all over the world again in June 2025!                                     

Rare, but not unknown anymore

Our slogan: “Rare, but strong together!” is part of our mission. Marshall-Smith Syndrome is an ultra-rare disease, only 50 children worldwide have this syndrome. And what about "strong together": parents, doctors, carers and volunteers worldwide are doing all they can to contribute to a better life for children with MSS and their families. Have a look at our mini documentary to get some closer to families with MSS.

Rare, but strong TOGETHER!

On Sunday, 24th of June 2018 we had our second “Maya`s Benefiz day” . It was some kind of a street party in the lovely village of Oberelsbach in the north of Bavaria (Germany). Mayas parents Pamela and Andre organized a public party on their court and the street in front of their house.

Many people came, young and old, healthy and disabled, friends and family. It was a big inclusion-event. We had all kind of things on our programm: in the morning three comedians and artists from the area: Cosmas Fischer, Fredi Breunig and Franky Schmitt with his Band Spilk. It was very funny and the audience had much to laugh about the good jokes and funny songs.

In the afternoon there was a lecture of the humangenetic Prof. Dr. Martin Zenker from the University of Magdeburg, who told about history of MSS and problems that childs actually have. There was also a dancing group from the Lebenshilfe and a solo guitar artist. Furthermore, a shepherd brought some goats. The children could stroke them and he teached the children how important nature and animals are for human being. Then the Band “For the song” entertained the visitors while a good friend of the family and Beer-sommelier Andy Seufert presented his newest receipts and creations of beer.

At the end of the day, Andre (Mayas dad) made an auction of prominent presents like a football shirt with all signs of the players of AC Milan and Inter Milan and special equipment from the German Car-Racer Dirk Adorf and Christopher Hase.

There was also a tombola for all guest and facepainting, piece of handicrafts and plays for the kids. Maya and her brothers Louis und Malte sold the new MSS-Cookbook.

At the end of the Day the Familiy Hahn received a lot of applause from all visitors. And this day finally brought another great result: more than 10.000 euros for the MSS Research Foundation!

On December 15, 2017 the MSS Research Foundation existed exactly 10 years. We are extremely grateful that the foundation has been able to do so much for children and adults with MSS and their families over the past 10 years. We celebrated this with a wonderful afternoon in CORPUS. Together we made a journey through man's body under the guidance of various experts in the field of MSS. We also looked back at what the foundation has been able to do for families with MSS in the past 10 years.

Would you like to support us with a gift so that we can contribute to making a life with MSS more bearable in the coming years? Then transfer your donation to our bank account number: NL83 RABO 0140 3511 59 in the name of MSS Research Foundation.

You can also become a friend of the MSS foundation by filling in this form. You then give a fixed annual contribution and you are included in the MSS friend file.

With your donation you contribute to research into MSS and good information for families with MSS worldwide.

Thank you for that!

The Standards of Care for the Marshall-Smith Syndrome are ready and we have also translated this document in English! We are very proud of this great document. Creating standards of care for the MSS fits the objectives of the MSS foundation. 

It is a next step in the efforts to strengthen the position of the patient and giving advice and information to families.The Dutch version is a result of efforts by Sonja Bracke and the Dutch umbrella organisation VSOP. The Fund PGO / Dutch Ministry of Health has funded this two-year program. The standards of care are available as an interactive pdf.

In 2017, this document has been translated into English.

We also have a patient edition. This patient information brochure provides a better explanation of medical terms. You can share this book with your family, relatives, friends, and also professionals who work in education and day-care.  They can all use this brochure as a source of information. This patient edition is also available as a book.

Download: Standards of Care (in English)

Download: Standards of Care patient edition (in English)