News
NEWS
SMARCB1 e.V. Blog
The International Union Against Cancer (UICC) is celebrating World Cancer Day for the 25th time. It has been celebrated on February 4 since 2000. This time, the motto for three years has been: "United by Unique". This means that every patient is unique as a person with their disease. And at the same time, those affected are connected to each other through their illness and share a common path. This motto also expresses the development of modern, personalized cancer treatment. Every disease is individual and should be treated accordingly. "The successes achieved so far in targeted treatment are impressive. But there is still a long way to go," explains Dr. Michael Wortmann, Chairman of the Association, on the occasion of World Cancer Day. In Germany, around 500,000 people are diagnosed with cancer every year. According to the latest figures available for 2023, the number of annual deaths due to cancer was around 230,000. Children and young people are not spared either. Every day, six young people under the age of 18 fall ill. The German Federal Statistical Office has observed a shift in the number of deaths from cancer over a period of 20 years. The number of people under 40 years of age who died of cancer fell by 32 percent. In the same period, the cancer death rate among the over-80s increased by 64 percent. "However, this is no reason to neglect cancer research for young people. On the contrary. Efforts to develop innovative and gentle forms of therapy, especially in the field of rare tumor diseases, which particularly affect this age group, must continue unabated," demands the association's chairman. This is also the mission of SMARCB1 e.V.. The organization has focused its work on promoting research in the field of sarcomas. It therefore supports the UICC initiative and is happy to receive any help for its work for the benefit of those affected.
The loss of the tumor suppression gene SMARCB1 in around 90 percent of cases is a characteristic feature of epithelioid sarcoma (EpS). Research into this phenomenon, its causes and its consequences, is therefore considered key to the management of the disease. The doctoral candidate Mr. Jia Xiang Jin and 12 other authors are now presenting new findings in a study conducted at the German Cancer Research Center (DKFZ)/Hopp Children's Tumor Center (KiTZ) in Heidelberg under the direction of Professor Dr. Dr. Thomas Grünewald. The study is published in the renowned journal "Cancer Communications" (Wiley) and is currently available online. Loss of SMARCB1 evokes targetable epigenetic vulnerabilities in epithelioid sarcoma - Jin - Cancer Communications - Wiley Online Library The Department of Translational Pediatric Sarcoma Research, headed by Professor Grünewald since 2020, is involved in research into EpS with the aim of developing innovative and gentle treatment options. It is also financially supported by SMARCB1 e.V. "We are very pleased to be able to support research into epithelioid sarcoma at the DKFZ/KiTZ with a continuous contribution and to witness how further questions about this mysterious disease are being answered step by step," says the association's chairman Dr. Michael Wortmann. The follow-up studies already in progress are eagerly awaited, particularly in the interests of those affected.
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.