SpringWorks Therapeutics and Jewelry Designer Jennifer Fisher Team Up to Encourage People with Desmoid Tumors to Take Action Before Their Tumor Takes Over
SpringWorks Therapeutics (SWTX) has partnered with jewelry designer Jennifer Fisher for an educational campaign about desmoid tumors. The initiative aims to raise awareness and encourage patients to seek specialist care for these aggressive tumors that can arise anywhere in the body.
Desmoid tumors can cause severe chronic pain, reduced mobility, and significantly impact quality of life. They are most common in patients aged 20-44, with a higher prevalence in females. The campaign emphasizes the importance of tracking symptoms and consulting oncologists experienced in treating desmoid tumors, as these tumors have high recurrence rates after surgery.
Jennifer Fisher shares her personal experience with a chest wall desmoid tumor diagnosed at age 30, highlighting the emotional journey and the importance of expert care. Dr. Alessandra Maleddu, a Sarcoma Specialist, notes that treatment guidelines now recommend systemic therapies over surgery for most growing or symptomatic desmoid tumors.
SpringWorks Therapeutics (SWTX) ha collaborato con la designer di gioielli Jennifer Fisher per una campagna educativa sui tumori desmoidi. L'iniziativa mira a sensibilizzare e incoraggiare i pazienti a cercare cure specialistiche per questi tumori aggressivi che possono insorgere in qualsiasi parte del corpo.
I tumori desmoidi possono causare gravi dolori cronici, ridotta mobilità e avere un impatto significativo sulla qualità della vita. Sono più comuni nei pazienti di età compresa tra 20 e 44 anni, con una prevalenza maggiore nelle donne. La campagna sottolinea l'importanza di monitorare i sintomi e consultare oncologi esperti nel trattamento dei tumori desmoidi, poiché questi tumori hanno alti tassi di recidiva dopo l'intervento chirurgico.
Jennifer Fisher condivide la sua esperienza personale con un tumore desmoide della parete toracica diagnosticato all'età di 30 anni, evidenziando il percorso emotivo e l'importanza delle cure esperte. La Dott.ssa Alessandra Maleddu, specialista in sarcomi, osserva che le linee guida per il trattamento raccomandano ora terapie sistemiche piuttosto che interventi chirurgici per la maggior parte dei tumori desmoidi in crescita o sintomatici.
SpringWorks Therapeutics (SWTX) se ha asociado con la diseñadora de joyas Jennifer Fisher para una campaña educativa sobre los tumores desmoides. La iniciativa tiene como objetivo crear conciencia y alentar a los pacientes a buscar atención especializada para estos tumores agresivos que pueden aparecer en cualquier parte del cuerpo.
Los tumores desmoides pueden causar dolor crónico severo, movilidad reducida y afectar significativamente la calidad de vida. Son más comunes en pacientes de 20 a 44 años, con una mayor prevalencia en mujeres. La campaña enfatiza la importancia de rastrear los síntomas y consultar a oncólogos con experiencia en el tratamiento de tumores desmoides, ya que estos tumores tienen altas tasas de recurrencia después de la cirugía.
Jennifer Fisher comparte su experiencia personal con un tumor desmoide de la pared torácica diagnosticado a los 30 años, destacando el viaje emocional y la importancia de la atención experta. La Dra. Alessandra Maleddu, especialista en sarcomas, señala que las pautas de tratamiento ahora recomiendan terapias sistémicas en lugar de cirugía para la mayoría de los tumores desmoides en crecimiento o sintomáticos.
SpringWorks Therapeutics (SWTX)는 보석 디자이너 제니퍼 피셔와 협력하여 데스모이드 종양에 대한 교육 캠페인을 진행합니다. 이 이니셔티브는 인식을 높이고 환자들이 이러한 공격적인 종양에 대해 전문적인 치료를 받도록 장려하는 것을 목표로 합니다.
데스모이드 종양은 심각한 만성 통증, 이동성 감소를 초래하고 삶의 질에 상당한 영향을 미칠 수 있습니다. 이들은 20세에서 44세 사이의 환자에게 가장 흔하며, 여성에서 더 높은 유병률을 보입니다. 이 캠페인은 증상을 추적하고 데스모이드 종양 치료에 경험이 있는 종양 전문의와 상담하는 것의 중요성을 강조합니다. 이러한 종양은 수술 후 재발률이 높기 때문입니다.
제니퍼 피셔는 30세에 진단받은 흉벽 데스모이드 종양에 대한 개인적인 경험을 공유하며, 감정적 여정과 전문적인 치료의 중요성을 강조합니다. 사르코마 전문가인 알레산드라 말레두 박사는 치료 지침이 이제 대부분의 성장하거나 증상이 있는 데스모이드 종양에 대해 수술보다 전신 치료를 권장한다고 언급합니다.
SpringWorks Therapeutics (SWTX) s'est associé à la designer de bijoux Jennifer Fisher pour une campagne éducative sur les tumeurs desmoïdes. L'initiative vise à sensibiliser et à encourager les patients à rechercher des soins spécialisés pour ces tumeurs agressives pouvant se développer n'importe où dans le corps.
Les tumeurs desmoïdes peuvent provoquer des douleurs chroniques sévères, une mobilité réduite et avoir un impact significatif sur la qualité de vie. Elles sont plus courantes chez les patients âgés de 20 à 44 ans, avec une prévalence plus élevée chez les femmes. La campagne souligne l'importance de suivre les symptômes et de consulter des oncologues expérimentés dans le traitement des tumeurs desmoïdes, car ces tumeurs présentent des taux de récidive élevés après la chirurgie.
Jennifer Fisher partage son expérience personnelle avec une tumeur desmoïde de la paroi thoracique diagnostiquée à l'âge de 30 ans, mettant en lumière le parcours émotionnel et l'importance des soins experts. Dr. Alessandra Maleddu, spécialiste des sarcomes, note que les recommandations de traitement conseillent désormais des thérapies systémiques plutôt que de la chirurgie pour la plupart des tumeurs desmoïdes en croissance ou symptomatiques.
SpringWorks Therapeutics (SWTX) hat sich mit der Schmuckdesignerin Jennifer Fisher für eine Aufklärungskampagne über Desmoidtumoren zusammengetan. Die Initiative zielt darauf ab, das Bewusstsein zu schärfen und Patienten zu ermutigen, spezielle medizinische Hilfe für diese aggressiven Tumoren zu suchen, die überall im Körper auftreten können.
Desmoidtumoren können starke chronische Schmerzen, eingeschränkte Beweglichkeit verursachen und die Lebensqualität erheblich beeinträchtigen. Sie treten am häufigsten bei Patienten im Alter von 20 bis 44 Jahren auf, mit einer höheren Prävalenz bei Frauen. Die Kampagne betont die Bedeutung der Symptomverfolgung und der Konsultation von Onkologen, die auf die Behandlung von Desmoidtumoren spezialisiert sind, da diese Tumoren nach einer Operation hohe Rückfallraten aufweisen.
Jennifer Fisher teilt ihre persönliche Erfahrung mit einem Desmoidtumor der Brustwand, der im Alter von 30 Jahren diagnostiziert wurde, und hebt die emotionale Reise und die Bedeutung fachkundiger Versorgung hervor. Dr. Alessandra Maleddu, Spezialistin für Sarkome, weist darauf hin, dass die Behandlungsempfehlungen jetzt systemische Therapien anstelle von Operationen für die meisten wachsenden oder symptomatischen Desmoidtumoren empfehlen.
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- Educational campaign aims to raise awareness and drive conversation about desmoid tumors, the devastating impact they have on patients' lives -
Desmoid tumors are aggressive and invasive tumors that can arise in any part of the body.1,2 Their tendril-like growths can wrap around nearby tissue and compress vital organs and nerves.2-4 This can cause severe and chronic pain, loss of function, reduced mobility, disfigurement, and anxiety, all of which can profoundly diminish a person's health and quality of life.1-3,5-7 Desmoid tumors are most commonly diagnosed in patients between the ages of 20 and 44 years and have a two-to-three times higher prevalence in females.8-9
"I was diagnosed with a desmoid tumor on my chest wall when I was 30 years old. I had so many questions, no answers, and didn't know what to expect for my future," said Jennifer. "Having a desmoid tumor was an emotional journey for me but it also shaped who I am today. I am passionate about sharing my story and proud to be working with SpringWorks to encourage others to seek expert care for their desmoid tumor and not let the physical pain from these tumors rob them of their vitality."
At the time of Jennifer's diagnosis, there were no approved treatments for desmoid tumors. Initially her doctors recommended that Jennifer have the tumor surgically removed, which would have taken half of her left chest wall with the possibility of permanently losing mobility in her arm.
"Since desmoid tumors have a high rate of recurrence after surgery, treatment guidelines now recommend systemic therapies for most desmoid tumors that are growing and/or symptomatic," stated Dr. Alessandra Maleddu, Sarcoma Specialist, University of
People living with a desmoid tumor should closely track how their symptoms are impacting daily life to gauge if their desmoid tumor could be progressing. Having increased pain or not being able to keep up with everyday activities could be signs that it is time to take action. Individuals should speak to a specialist, like an oncologist with experience treating desmoid tumors, and advocate to find the best approach for treatment.10
"Our commitment to the desmoid tumor community runs deep, and we are pleased that Jennifer is sharing her powerful story to raise awareness about these devastating tumors and encourage patients to take action to manage their desmoid tumor," said Bhavesh Ashar, Chief Commercial Officer at SpringWorks Therapeutics. "Jennifer's experience shines a light on the many struggles that patients with desmoid tumors face and underscores the importance of patients advocating for themselves and finding the right care team to determine the best approach for their treatment."
Follow Jennifer Fisher on Instagram.
About Desmoid Tumors
Desmoid tumors are rare, aggressive, locally invasive tumors of the soft tissues that can be serious, debilitating, and, in rare cases when vital structures are impacted, life-threatening.1,2
Desmoid tumors are most commonly diagnosed in patients between the ages of 20 and 44 years, with a two-to-three times higher prevalence in females.8,9 It is estimated that there are 1,000-1,650 new cases diagnosed per year in
Although they do not metastasize, desmoid tumors can be associated with recurrence rates of up to
About SpringWorks Therapeutics
SpringWorks is a commercial-stage biopharmaceutical company dedicated to improving the lives of patients with severe rare diseases and cancer. We developed and commercialized the first and only FDA-approved therapy for adults with progressing desmoid tumors and the first and only FDA-approved medicine for both adults and children with symptomatic neurofibromatosis type 1 associated plexiform neurofibromas (NF1-PN) not amenable to complete resection. We are also advancing a diverse portfolio of novel targeted therapy product candidates for patients with both solid tumors and hematological cancers.
For more information, visit www.springworkstx.com and follow @SpringWorksTx on X, LinkedIn, Facebook, Instagram, and YouTube.
Contact
Media:
Catherine Cantone
Corporate Communications Sr. Director
Catherine.Cantone@Springworkstx.com
(203) 705-1126
References
- Sbaraglia M, Bellan E, Dei Tos AP. The 2020 WHO Classification of Soft Tissue Tumours: news and perspectives. Pathologica. 2021;113(2):70-84. doi:10.32074/1591-951X-213.
- Penel N, Chibon F, Salas S. Adult desmoid tumors: biology, management and ongoing trials. Curr Opin Oncol. 2017;29(4):268-274. doi:10.1097/CCO.0000000000000374.
- Constantinidou A, Scurr M, Judson I, Litchman C. Clinical presentation of desmoid tumors. In: Litchman C, ed. Desmoid Tumors. Springer; 2012:chap 2. Accessed August 2023. https://www.researchgate.net/publication/226455135. doi:10.1007/978-94-007-1685-8_2.
- Joglekar SB, Rose PS, Sim F, Okuno S, Petersen I. Current perspectives on desmoid tumors: the Mayo Clinic approach. Cancers (
Basel ). 2011;3(3):3143-3155. doi:10.3390/cancers3033143. - Husson O, Younger E, Dunlop A, et al. Desmoid fibromatosis through the patients' eyes: time to change the focus and organisation of care? Support Care Cancer. 2019;27(3):965-980. doi:10.1007/s00520-018-4386-8.
- Gounder MM, Maddux L, Paty J, Atkinson TM. Prospective development of a patient-reported outcomes instrument for desmoid tumors or aggressive fibromatosis. Cancer. 2020;126(3):531-539. doi:10.1002/cncr.32555.
- Bektas, M, et al. Desmoid Tumors: A Comprehensive Review. Adv Therapeutics 2023. doi.org/10.1007/s12325-023-02592-0.
- van Broekhoven DLM, Grünhagen DJ, den Bakker MA, van Dalen T, Verhoef C. Time trends in the incidence and treatment of extra-abdominal and abdominal aggressive fibromatosis: a population-based study. Ann Surg Oncol. 2015;22(9):2817-2823. doi:10.1245/s10434-015-4632-y.
- Skubitz KM. Biology and treatment of aggressive fibromatosis or desmoid tumor. Mayo Clin Proc. 2017;92(6):947-964. doi:10.1016/j.mayocp.2017.02.012.
- Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.2.2023. © National Comprehensive Cancer Network, Inc. 2023. All rights reserved. Accessed August 2023. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
- Orphanet Report Series: Rare Diseases collection. Prevalence and incidence of rare diseases: bibliographic data. Number 1, January 2022. Accessed November 5, 2024. https://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf.
U.S. Department of Commerce. News Blog.U.S. population estimated at 332,403,650 on Jan. 1, 2022. Accessed August 2023. https://www.commerce.gov/news/ blog/2022/01/us-population-estimated-332403650-jan-1-2022#:~.- Easter DW, Halasz NA. Recent trends in the management of desmoid tumors. Summary of 19 cases and review of the literature. Ann Surg. 1989;210(6):765-769. doi:10.1097/00000658-198912000-00012.
- Gronchi A, et al. Desmoid Tumor Working Group. The management of desmoid tumours: a joint global consensus-based guideline approach for adult and pediatric patients. Eur J Cancer. 2020;127:96-107. doi:10.1016/j.ejca.2019.11.013.
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FAQ
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