The Board of SMARCB1 e.V. - Cancer Research for Young People was confirmed - in office for two years by the members at the Annual General Meeting. Dr. Michael Wortmann was re-elected as First Chairman, Johannes Lapp as Second Chairman and Professor Dr. Martin Wortmann as Treasurer. The three Board members, who have held their positions since the association was founded in 2019, thanked the members for their renewed trust. "The Board of Directors will continue to work at full speed to promote research projects within the scope of the association's purpose and to provide information to educate the public about rare cancers," promised the association chairman after his re-election. "We want to help science unravel the mystery of sarcomas, those rare cancers that disproportionately affect young people." The association is rightly proud to have actively and successfully promoted the international networking of experts in this field in recent years. This has laid the foundation for developing gentle therapies and fighting the disease sustainably in the future. "We are delighted that scientists are willing to conduct research in this field, which is far from the mainstream, for the benefit of patients. They deserve all our support for this. Even though there may still be a long way to go, together we will not lose sight of the goal," the Chairman is certain.

Sunday, February 4, is World Cancer Day for the 24th time. Its motto is "Closing the gaps in care". SMARCB1 e.V. supports World Cancer Day and points out that there is still a considerable backlog in research, prevention and treatment in the field of sarcomas. "Although the progress made in recent years gives cause for hope, it is still far from satisfactory," explains Dr. Michael Wortmann, Chairman of SMARCB1 e.V. The term "the forgotten cancer" has become established for sarcomas. Unfortunately, this is only too true in terms of financial support and public attention. The fact that sarcomas of the bones and soft tissue only account for around 1% of all cancers is certainly a decisive factor in this deficit. However, it must always be pointed out that children, adolescents and young adults are disproportionately affected by sarcomas. To make matters worse, this rare type of cancer is further subdivided into around 100 subtypes, meaning that a high degree of specialization is required of researchers and treating physicians, but this expertise benefits comparatively few patients. SMARCB1 e.V. aims to shed more light on the mechanisms of a group of sarcomas through an overarching approach. They all have a characteristic feature, namely the loss or impairment of the tumor suppression gene SMARCB1. The research supported by SMARCB1 e.V. focuses on epithelioid sarcoma, which is characterized by the complete loss of the gene in around 90% of all cases. "It would be very welcome if more attention were paid to sarcomas on World Cancer Day, initiated by the Union for International Cancer Control (UICC), in order to be able to offer those affected a better service in the foreseeable future. Patients have a right to this," concludes Dr. Michael Wortmann.

The National Decade Against Cancer (NDK), a joint initiative of the Federal Ministry of Research and the Federal Ministry of Health, is celebrating its fifth birthday in Berlin on February 2. "Five years of the NDK. Unfortunately, this is no reason to celebrate. Because despite much progress, cancer is still far from being defeated. And that's why it's right that on this day, too, the players are focusing on the disease and strategies to combat it," explains the Chairman of SMARCB1 e.V., Dr. Michael Wortmann. SMARCB1 e.V. joined the NDK as an official supporter in 2020, the year after it was founded. Since then, the number of supporting institutions has grown steadily. "It is impressive to see the range of organizations that are now represented, all united in the desire to stand up to cancer," says Dr. Michael Wortmann. "We are happy and grateful that SMARCB1 e.V., an association that has focused entirely on a specific group of sarcomas from the outset, has also been accepted into the circle of supporters. This means that we, as a patient organization, can also shine the spotlight on those affected by these rare diseases. It is crucial that all stakeholders network, benefit from each other through give and take and further sensitize the public to this issue. The event at the Futurium will be opened by Federal Research Minister Bettina Stark-Watzinger. It is to be hoped that the development work to date will continue successfully in the second half of the decade.

SMARCB1 e.V. - Cancer research for young people wishes all members, friends, supporters and, of course, especially those affected by cancer a happy, reflective and encouraging Christmas. "Shortly before the end of the year, it is time to pause and look back on the events and results of the current year. Pausing and reflecting is always an opportunity to take stock. Without an assessment of the current situation, there is no perspective," the association's chairman Dr. Michael Wortmann is certain. 2023 has brought a determination of the status quo with regard to epithelioid sarcoma (EpS), on which the association focuses in the spectrum of sarcomas with a loss or impairment of the tumor suppressor gene SMARCB1. "The second international, digital expert meeting on EpS on March 15/16 with 17 speakers from seven countries once again brought together leading international scientists. The exchange of knowledge and the identification of relevant questions have shown the direction in which research on epithelioid sarcoma must move in the coming years," says the association's chairman. The two expert meetings in 2021 and 2023 have helped to establish a powerful scientific community. The network resulted in the publication "Translational Aspects of Epithelioid Sarcoma - Current Consensus" in the renowned journal Clinical Cancer Research of the American Association for Cancer Research in early November 2023. "The participation of patient organizations in the publication, including SMARCB1 e.V., is remarkable and by no means a matter of course. This is also a step in the right direction, which we are very pleased about," summarizes Dr Michael Wortmann. This step is logical, however, because the previous expert meetings were initiated and organized by patient organizations. The task now is to develop a coordinated overall strategy for researching and ultimately curing EpS from the knowledge gained and future tasks and to implement it with vigor. "One building block will be the third international meeting of experts in 2025, preparations for which are now underway. So there is still a lot to do," explains the association's chairman. Challenges that will be tackled by SMARCB1 e.V. after the Christmas break and the turn of the year.

SMARCB1 e.V. welcomes the publication of the article "Translational Aspects of Epithelioid Sarcoma - Current Consensus" in the renowned journal Clinical Cancer Research, published by the American Association for Cancer Research. "The article sheds light on the entire spectrum of aspects that are important for research into this rare malignant disease. In my opinion, it represents the basis for research in the coming years," explains the chairman of the association Dr. Michael Wortmann. 26 authors contributed to the publication, including five patient representatives from Italy, the USA and Germany. Not only the involvement of patient organizations, but also their international networking with each other is indispensable today for successful work in the fight against rare diseases, says the association's chairman. The present work is also largely based on the international, digital expert meetings on epithelioid sarcoma (EpS) held in 2021 and 2023, which were organized by SMARCB1 e.V. and the Italian association Orchestra per la vita Aps. "The consensus paper that has now been published after intensive preparatory work spurs us on to hold another successful meeting of experts in 2025 to get closer to the secret of this mysterious disease," says Dr. Michael Wortmann. "But now it's time to say a big thank you to everyone involved, especially Dr. Cristina Antonescu (Memorial Sloan Kettering Cancer Center, New York), Professor Dr. Dr. Thomas Grünewald (German Cancer Research Center/Hopp Children's Cancer Center, Heidelberg) and Dr. Charles Keller (Children's Cancer Therapy Development Institute, Beaverton) for their leadership."

Sarcomas are considered the "forgotten cancer". In the public perception and also in the world of medicine and science, they play only a minor role. This is certainly due to the fact that sarcomas account for only about one percent of all cancer cases. Accordingly, the few pioneers of sarcoma research are also rather marginal phenomena in the awareness of researchers, physicians and patients. Sarcoma research has only really taken off in recent years and decades. Franz M. Enzinger is undoubtedly one of its pioneers in recent times. He deserves to be given a fitting place in the gallery of outstanding sarcoma researchers," says the chairman of SMARCB1 e.V., Dr. Michael Wortmann. Franz M. Enzinger was born in Rohrbach, Austria, in 1923, one hundred years ago. He was taken prisoner of war in Normandy in 1944 and began his actual scientific career in the service of the U.S. Army. There he became head of the Soft Tissue Department of the Armed Forces Institute of Pathology (AFIP). "Among his outstanding achievements was the description and naming of epithelioid sarcoma in his 1970 publication 'Epithelioid sarcoma: a sarcoma simulating a granuloma,'" explains Dr. Michael Wortmann. "Without this fundamental work, research into this particularly rare type of sarcoma would not be where it is today. However, the chairman stated, it should not be forgotten that the Polish pathologist Józef Janusz Laskowski had already written a description of the disease in 1961 under the title "Aponeurotic sarcoma". Because of the political block building separating the East and West and also affecting science and research at that time, it did not have the groundbreaking effect that Enzinger's publication achieved. "Today, scientists from all over the world are working together to research this enigmatic disease. We as SMARCB1 e.V. are grateful to have been able to contribute by organizing the first two global digital expert meetings in 2021 and 2023." Today, he said, research builds on the work of scientists such as Franz M. Enzinger, who was born a hundred years ago, and Józef Janusz Laskowskis. Reason enough not to let these pioneering achievements be forgotten.

SMARCB1 e.V. has funded research on epithelioid sarcoma with 69,000 euros to date. The amount will benefit the project "Biological, functional and clinical characterization of epithelioid sarcomas for the development of innovative and gentle therapy options" headed by Professor Dr. Dr. Thomas Grünewald at the Hopp Children's Tumor Center (KiTZ) Heidelberg.The project started in 2020 and is scheduled to run for five years. SMARCB1 e.V. is aiming to raise a total of 150,000 euros for the project. "Thanks to the support of numerous donors and contributors, we were able to provide the proud amount for this unique project," says the association's chairman Dr. Michael Wortmann. This will make a substantial contribution to tracking down this rare and mysterious disease and opening up prospects for improved treatment options for those affected. This is also the result of networking and practical cooperation between scientists who have often worked on their own up to now. SMARCB1 e.V. considers itself fortunate to have contributed to this development thanks to two international expert meetings on epithelioid sarcoma in 2021 and 2023. "Currently, our efforts are focused on attracting additional funding to reach our funding goal," says the association's chairman. "Therefore, we appreciate any donation that we can forward to support the research. The details of the donation account can be found on our website under the "Donate" button. Other payment methods, such as paypal, are also welcome. Any amount will be gratefully accepted," affirms Dr. Michael Wortmann.

The second international digital panel on epithelioid sarcoma (EpS) was, in retrospect, another successful step towards deciphering this rare disease, which disproportionately affects young people. This was the conclusion drawn by the organizers SMARCB1 e.V. (Germany) and Orchestra per la vita (Italy) together with the two moderators Professor Dr. Dr. Grünewald (Deutsches Krebsforschungszentrum/Hopp-Kindertumorzentrum Heidelberg) and Dr. Sandro Pasquali (Istituto Nazionale dei Tumori Milano). "A year of intensive preparation has borne fruit. The international orientation of EpS research, which began with the first panel in 2021, is yielding remarkable results that can now be built upon," summarizes Dr. Michael Wortmann, the chairman of SMARCB1 e.V.. The new collaborations initiated during the meeting give reason to hope for further progress. The fourteen presentations by researchers from seven countries documented the continuous gain in knowledge. "The important thing is to put the results together like a jigsaw puzzle, to understand the mechanisms triggering EpS and then translate them into gentle therapies," said Dr. Michael Wortmann. " It is a matter close to our hearts to thank all those involved for their personal commitment. And of course SMARCB1 e.V. offers its support wherever and whenever possible," explains the association chairman. The next EpS Expert Panel is planned for 2025.

The 2nd International Digital Expert Meeting on Epithelioid Sarcoma (EpS) is just three weeks away. 17 leading experts will present and discuss the current state of research on this rare cancer, which disproportionately affects young people, on March 15-16. The event is a follow-up to the May 26-27, 2021 meeting, which brought together basic researchers and clinicians in large numbers on the topic for the first time since epithelioid sarcoma was described in 1970. In the meantime, various national and international collaborations have emerged, the (interim) results of which will be incorporated into the current conference. "We are pleased that, together with our Italian partner organization Orchestra per la Vita, we have been able to provide the initial spark, so to speak, for a broad-based, continuous approach to this disease. Only through international networking can the puzzles be solved step by step and translated into successful, gentle therapies," says the chairman of SMARCB1 e.V. Dr. Michael Wortmann in this regard. In the background, there is always the overal goal of deciphering the mechanisms underlying epithelioid sarcoma and targeting other sarcomas in which the impairment or loss of the SMARCB1 gene also plays a role. Therefore, the upcoming meeting will not only address epithelioid sarcoma specialists. "We are delighted with the numerous registrations already received for the upcoming expert meeting and are very confident that it will take sarcoma research another step forward, not only in relation to EpS," said Dr. Michael Wortmann. https://www.epsdigitalexpertpanel.com/home