Leading Non-Profits in Adolescent and Young Adult Cancer
Launch Global Initiative as Risks From COVID-19 Increase
CovidAYACancer.org to Provide Critical Guidance
to Patients and Healthcare Professionals
(April 14, 2020) – In response to the urgent demand for expert guidance during the ongoing coronavirus pandemic, six non-profit Adolescent and Young Adult (AYA) cancer advocacy organizations have launched CovidAYACancer.org, a comprehensive online resource for young people with cancer and the health professionals who treat them.
Teen Cancer America (TCA), Stupid Cancer, The Leukemia and Lymphoma Society, Cancer and Careers, Lacuna Loft and CureSearch have formed a unique alliance with leading oncology specialists worldwide, including Dr. Craig Nichols, Dr. Archie Bleyer and Dr. Stu Seigel, to develop the global website. CovidAYACancer.org will be an all-in-one repository for critical information specifically benefittng AYA cancer patients, patient advocates and medical professionals working with this unique population.
Young people with cancer must endure increased isolation due to the public health crisis and state mandated shelter-in-place guidelines further exacerbating the already extraordinary circumstances they face.
“This initiative will provide vitally important assistance to patients and their families, as well as to medical and non-medical oncology professionals,” said alliance spokesperson and cancer survivor Mallory Casperson, founder and CEO of Lacuna Loft. “We are deeply grateful to each of our partners for coming together so quickly to contribute to the CovidAYACancer website project offering guidance on where to find supportive programs.”
Oncologists in the AYA cancer field have exceptional challenges treating immunocompromised patients who are at elevated levels of risk as a result of COVID-19. They are faced with trying to keep virus-free patients safe while determining and managing the complex treatments required for those that are or have been infected by the virus.
“The global pandemic is profoundly changing cancer care delivery,” said Dr. Craig Nichols, an internationally recognized specialist in germ cell tumors. We have to deliver high-quality care while stopping the virus, assuring good patient outcomes while also protecting the oncology workforce and managing capacity during high demand. It is so gratifying that the AYA oncology community is providing ‘bottom up’ innovative solutions.”
CovidAYACancer.org is designed to give AYA cancer patients and survivors unprecedented access to information and services such as financial resources, virtual events, employment and psychosocial support. It will provide access to online supportive programs and guidance to patients and their families.
The site will also provide extensive and constantly updated professional guidelines for doctors and frontline health teams. Drs. Nichols, Bleyer and Siegel have been consulting with colleagues around the world about best practices during this unprecedented health crisis, as normal protocols for oncological treatment have changed significantly.
“This has been a collaborative effort by a remarkable group of experts who are passionate about the care, treatment and psychological wellbeing of AYA cancer patients,” said Simon Davies, Executive Director of Teen Cancer America.
The CovidAYACancer alliance is supported by international pharmaceutical company Servier which is providing coordination and technical support. Marketing and digital design has been provided by KWT Global. Media and communications services are provided by French|West|Vaughan.
Social media hashtags: #covidAYAcancer #ayacsm #Covid19 #AYAcancer
About Teen Cancer America
Teen Cancer America seeks to bridge the gap between pediatric and adult oncology care by helping the health providers and health systems develop specialized programs and facilities for this age group. TCA brings together physicians and allied healthcare professionals in both pediatric and adult oncology. Age-targeted care for this population is necessary for medical and appropriate psychosocial development. Outcomes associated with some cancers that target this age group have not improved in over 30 years. Teens and young adults with cancer are long overdue for an upgrade and TCA can hopefully light the fire in America’s health systems. For more information, contact Michelle Aland firstname.lastname@example.org or visit www.teencanceramerica.org.
The CureSearch mission is to end childhood, adolescent and young adult cancer by driving targeted and innovative research with measurable results in an accelerated time frame. CureSearch drives critical collaborations to accelerate the pace of pediatric drug development. With the unmatched expert leadership of scientific and industry councils, the charity identifies and funds only the most innovative research with the potential to move quickly into the clinic and marketplace, reaching children, adolescents and young adults now. For more information, visit www.CureSearch.org.
About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society® (LLS) is a global leader in the fight against cancer. The LLS mission: cure leukemia, lymphoma, multiple myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care. Founded in 1949 and headquartered in Rye Brook, N.Y., LLS has chapters throughout the U.S. and Canada. Patients should contact the Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m. ET. To learn more, visit www.LLS.org. Follow us on Facebook, Twitter, and Instagram
The LLS Children’s Initiative: Cures and Care for Children with Cancer
The LLS Children’s Initiative is a $100 million multi-year effort to take on children’s cancer through every facet of LLS’s mission: research, patient education, and support and policy and advocacy. The LLS Children’s Initiative includes: more pediatric research grants, a global precision medicine clinical trial, expanded free education and support services for children and families, and driving policies and laws that break down barriers to care. For more information, visit www.lls.org/childrens-initiative.
About Lacuna Loft
Lacuna Loft is a nonprofit organization that provides online support programs to young adult cancer patients, survivors, and caregivers. Regardless of diagnosis and regardless of where they live, Lacuna Loft’s programs are fully accessible and specifically designed for young adults facing cancer, offering them the survivorship care they deserve through a medium that fits their lifestyle. For more information, contact Mallory Casperson, email@example.com or visit lacunaloft.org.
About Cancer and Careers
Founded in 2001, Cancer and Careers is a national nonprofit that empowers and educates people with cancer to thrive in their workplace, by providing expert advice, interactive tools and educational events. The organization reaches more than 440,000 individuals per year online, in print and in person. Its free services include a comprehensive website and library of publications in English and Spanish, legal and insurance information, career coaching, resume review, professional development micro-grants, and national events and workshops for people with cancer and their healthcare providers, coworkers and employers. For more information, email firstname.lastname@example.org or visit their English website at www.cancerandcareers.org and Spanish website www.cancerandcareers.og/es.
About Stupid Cancer
Stupid Cancer’s mission is to empower adolescents and young adults affected by cancer by ending isolation and building community. Through innovative programming and strategic communications, the organization aims to provide support, resources, education, and a sense of community both online and in-person. For more information, please visit www.stupicancer.org.
Stu Siegel, M.D. Former Director of the Children’s Center for Cancer and Blood Diseases at CHLA and current Chair of the Board of CureSearch.
Craig Nichols, M.D. Director of Testicular Cancer Commons, SWOG Executive Officer
Archie Bleyer, M.D. Oregon Health Sciences University
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For media inquiries, contact:
Charles Upchurch, French|West|Vaughan
Representing Teen Cancer America