7 AND 8 NOVEMBER 2011: International Research Consortium Meeting for FSHD research professionals in Watertown, Massachusetts, USA hosted by the FSH Society. A report of two new research findings can be read on the The Muscular Dystrophy Campaign website

28 OCTOBER 2011: Publication in PLoS One by Celine Vanderplanck and her colleagues at the Laboratory of Molecular Biology, University of Mons, Belgium, describing the prevention of FSHD muscle cell atrophying in the laboratory! Researchers at the laboratory, led by Alexandra Belayew, were responsible for the discovery of the DUX4 gene involved in FSHD in 1999. DUX4's central role in causing FSHD was confirmed in August 2010. DUX4 protein behaves like an eccentric orchestra conductor, disrupting the activity of many other genes. Researchers have therefore tried to inhibit this gene in the FSHD cell culture of muscles, using antisense oligonucleotides, which prevent the maturation of messenger RNA DUX4, which is necessary for the production of its protein. By treating the muscle cells with these antisense oligonucleotides the researchers prevented the FSHD cells from atrophying. In addition, two markers of disease pathogens also disappeared. The "anti-DUX4" oligonucleotides used were manufactured by Steve D. Wilton, an Australian researcher internationally known for developing similar tools that have successfully passed clinical testing in children with Duchenne's disease.
Click here for a more in depth explanation of this publication

Expected 2012: We are translating a Dutch book about FSHD (displayed on the right) into English and will publish it as soon as possible. The book is written by Anke Lanser and contains photographs, stories and poems of people with FSHD, in addition to general information about the disease. The English title will be 'You're not alone with FSHD!'. You can order the Dutch version of the book here.

29 AND 30 OCTOBER 2011: Réunion Patients/chercheurs à Agde près de Montpellier (détails : www.FSHD-Group.eu ) - FSHD patient and scientists meeting in Agde (near Montpellier in France). Read a newspaper report (in French)

OCTOBER 2011: Richard Lemmers receives Young Myologist of the Year award
Richard Lemmers, PhD, has received an award for his great contribution in unravelling the disease mechanism of FSHD. This prize was awarded to him at the 16th International Congress of World Muscle Society in October 2011 in Portugal.
Richard Lemmers was honored  to receive the “President's Prize for Young Myologist of the Year” by the World Muscle Society (WMS). "It is very important that with this prize more attention is drawn to FSHD research, to recruit enthusiastic researchers and to raise funds."
The prize was awarded for his long contribution to FSHD research that eventually led to the identification of the genetic mechanism that causes FSHD, published in August 2010 in Science. The research group at the LUMC in Leiden had a lead role in this research.
The WMS multi-day conference, with over 550 participants, is held annually with a focus on many neuromuscular diseases. FSHD usually plays a smaller role, but due to the latest research results, there were four presentations on FSHD this year.

30 SEPT - 1 OCT 2011: Scientific meeting hosted by FSHD Europe in collaboration with the Dutch FSHD Foundation, to determine our funding strategy for the coming 4 years.

JULY/AUG 2011: Two publications in Molecular Therapy by research groups from Milan, Italy, Seattle, US, and Ohio, US, describing the treatment of FSHD mice with antisense molecules, resulting in increases in stamina, muscle mass and strength. We have provided a summary in layman's terms of one of the publications

MAY 2011: Publication of the book 'Defining Moments' by Kees van der Graaf. He presents a method for establishing total dynamic balance, and, finding equilibrium in his own life, uses the book to raise awareness of FSHD. (Order the book)

MAY 21/22 - 2011: Réunion Patients/chercheurs à Romorantin près d'Orléans (détails : www.FSHD-Group.eu ) - FSHD patient and scientists meeting near Orleans (France)

MAY  2011: At Myology congress in Lille, Francoise Helmbacher (Marseille) proposed a new gene (FAT1) involved in FSHD.

APRIL 2011: For three years the Amstel Gold Race has been an important event for the Dutch FSHD Foundation. This time 75 sports enthusiasts managed to raise 30.000 euros by cycling in the tourversion of the race! Money that is sorely needed for scientific research into FSHD. If you would like to join the FSHD team in the next Amstel Gold Race, please contact the FSHD Foundation via This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

JUNE 2010: Workshop "The Best Practice Meeting for the Molecular Diagnosis of FSHD" June 9, 2010 (University Medical Center, Leiden, The Netherlands.)

APRIL 2010:  On Saturday 17th April 2010, the 44th classic Dutch cycling tour for amateurs, the "Amstel Gold Race'. After the success of 2009 where we raised 110.000 € for scientific research into FSHD, we will once again try to cycle with as many people as possible. If you would like to join the FSHD team in the next Amstel Gold Race, please contact the FSHD Foundation via This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

MARCH 2010: Trial in Montpellier (South of France) - first 20 FSHD patients included for 2010

JANUARY 2010: 171st ENMC workshop: Standards of care and the management of FSHD patients (NH Hotel in Naarden, The Netherlands. (see report)

DECEMBER 2009: Italy : TV Program (RAI & TG1) speaks about FSHD
E’  moderna , intraprendente , insegna ai più piccoli a scoprire ipropri talenti naturali: è Trilli, la fatina di Peter Pan, protagonista del film della Walt Disney “Trilli e il Tesoro Perduto” che ha un grande successo tra i bambini di tutto il mondo . E’ una“fatina aggiustatutto” capace di riciclare anche gli oggetti più insignificanti e da dare loro una nuova vita. Da qui l’dea  di Angela Nocentini, docente dell’Accademia di Belle Arti a Firenze di realizzare con materiali riciclati  due vestiti di Trilli: uno ispirato alla primavera e uno all’autunno.
Gli abiti sono stati messi all’asta per raccogliere fondi a favore di una distrofia molto diffusa: la FSHD, o facio-scapolo-omerale, una malattia neuromuscolare che colpisce soprattutto i bambini. A Tg1/Fa’ a cosa giusta con Angela Nocentini,   Trilli, ambasciatrice dell’ambiente per le Nazioni Unite e  fatina della solidarietà che con Telethon  aiuta a sostenere la ricerca.
In studio anche Fabiola Bertinotti, membro del comitato europeo di FSHD Europe e rappresentatnte della UILDM, Unione Italiana Lotta alla Distrofia Muscolare.
You can watch the video at http://www.rai.tv/dl/RaiTV/programmi/media/ContentItem-4f04b52b-5aed-48ed-9c14-6fc60309556d.html