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SMARCB1 e.V. Blog
The year 2024 is coming to an end. "We can all feel it: the world is on the move, but no one knows which way the pendulum will swing. More war or peace, a downward trend in the economy or an upturn. The wishes and hopes are clear. But whether they will come true is written in the stars," says the chairman of SMARCB1 e.V., Dr. Michael Wortmann. In these difficult times, it is important to keep a clear compass and to give the subject of "sarcomas", rare malignant diseases that often affect young people, the attention it deserves in public awareness and research. "It can certainly be seen as a Sisyphean task to unravel the mystery of sarcomas, perhaps even to find the key to the causes and then also to successful cures," states the association's chairman. It is therefore all the more gratifying that scientists around the world have set themselves precisely this goal. This commitment with an open outcome deserves the highest respect and recognition. SMARCB1 e.V. was once again able to promote research this year with non-material support through public relations work and a continuous financial contribution. "In the coming year, we will continue to support research into epithelioid sarcoma in particular," announced the association's chairman. The activities of SMARCB1 e.V. focus on a project at the German Cancer Research Center (DKFZ)/Hopp Children's Tumor Center (KiTZ) in Heidelberg under the direction of Professor Dr. Dr. Thomas Grünewald. Here and now, however, we would first like to thank everyone involved, the dedicated scientists and the numerous donors, for their commitment. "We would like to take this opportunity to wish you a Merry Christmas and good luck, blessings and health for what is sure to be a challenging year in 2025," says Dr. Michael Wortmann. With confidence, optimism and faith in the good, we will certainly come a good deal closer to achieving the goals we have set ourselves.
Christmas markets are back or still open all over the country. Whether small or large, tranquil or rather lively: they are popular attractions for adults and children alike. Even various attacks or attempted attacks have not been able to change this. Christmas markets whisk you away from everyday life into another, seemingly ideal world. "But Christmas markets are also places of communication. Visitors are often more inclined to lend an ear to social, human issues," says Dr. Michael Wortmann, Chairman of SMARCB1 e.V.. He speaks from experience. For several years now, the association has alternated with other charitable organizations at the social stand at the Refrath Christmas market. "When we explain the work of SMARCB1 e.V. to visitors and tell them that behind the abstract-sounding name of the association lies research funding for young people suffering from sarcoma, their interest is quickly aroused". It is not uncommon for those affected to come to the stand who are suffering from cancer themselves or have someone who is. The exchange is then often particularly intense. "People want and need to talk. Dealing with illness requires direct communication. We feel that time and time again," says the chairman. Of course, the association also brings information boards and offers flyers. And, of course, for a donation, guests can take small gifts with them to remind them of their visit. "But the important thing is that our presence at the Christmas market - as at other public events - makes a small contribution to raising awareness of the problem of rare cancers," sums up Dr. Michael Wortmann.
Exercise is healthy and is also recommended in connection with cancer. Booklet 48 from the "Blue Guide" series published by German Cancer Aid provides valuable support here: "Exercise and sport in cancer". This is why SMARCB1 e.V. - Krebsforschung für junge Menschen (Cancer Research for Young People) also organizes regular walks, an easy and affordable form of exercise for most people. Anyone who enjoys exercise in the great outdoors and wants to do something for their health is invited to take part in the walks. The next SMARCB1 e.V. hike will take place in Bergisch Gladbach. The route leads from Bensberg Castle down to Refrather Kahnweiher, where the stones for the castle were once quarried. The start is on Friday, October 25, 2024, at 2.30 pm at the castle entrance. The approximately three-hour hike will once again be led by Hans Peter Müller, an excellent expert on Bergisch Gladbach's local history. "We are delighted to be able to continue our series of walks with new routes. These events always provide an opportunity to exchange ideas and are therefore refreshing for body and soul," says association chairman Dr. Michael Wortmann. Of course, the association is also grateful for a donation. The SMARCB1 e.V. hikes fulfill a dual purpose. They contribute to the well-being of the participants and to cancer research. Registration: michael.wortmann@smarcb1.de Donation account: DE23 3705 0299 0157 2946 17
SMARCB1 e.V. has set itself the goal of informing the public about sarcomas. The focus is on sarcomas associated with the loss or impairment of the SMARCB1 gene. This gene helps to suppress the development of tumors. The next public event is the "Veedelsfest" in Refrath, a district of Bergisch Gladbach, on August 31, 2024, when the association will be represented with a stand on the square in front of the Catholic parish church of St. Johann Baptist. SMARCB1 e.V. collects donations on this and other occasions. "We don't just want to provide information, we also want to make a financial contribution to advancing research into sarcomas," explains the association's chairman Dr. Michael Wortmann. In addition to many small and large donations from private individuals, SMARCB1 e.V. also receives donations from institutions and private companies. The association is registered in the list of non-profit organizations that are entitled recipients for fines in investigation, criminal and clemency proceedings hold at the the public prosecutor's offices in Cologne, Düsseldorf and Bonn. SMARCB1 e.V. has already benefited from this on occasion, with companies ranging from suppliers of door technology to biotechnology companies. The most recent example is Amgen GmbH from Munich, which has donated 2,500 euros to the association. "SMARCB1 e.V. would like to thank all donors. Every donation, regardless of the amount, is welcome," says the association's chairman. "Without these donations, research into sarcomas, rare diseases, would often not be possible." The presentation on August 31 thus fulfills a dual function: to inform the public and also to raise funds for further work.
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.