Two exciting new lung cancer nonprofits have recently formed to meet critical areas of unmet need within the lung cancer community:
Oncogene Cancer Research (OCR) is a patient and family-run charity focused on advocating for and funding research to improve the life-expectancy for our oncogene-driven lung cancer community. There’s a great opportunity for like-minded and research-focused oncogene groups to collaborate and use our collective voices to accelerate life-saving treatments, improvements in care, and advance issues that matter.
OCR was co-founded by Stage IV ALK+ nsclc patient Yvonne Diaz and Jan Clark, whose daughter was diagnosed with ALK+ nsclc four years ago at age 20. “Jan Clark and I co-founded Oncogene Cancer Research to advocate for and fund more research into all oncogene-driven lung cancers,” says Yvonne. “23rw312`We know that patients like me and Jan’s young daughter Amy are alive today because of research. Yet, we also know that drug resistance will render our treatments ineffective in time. As a patient community, by having like-minded goals and working together, we can accelerate outcomes faster. We are so impressed by the work done by the RETpositive community on its research awards and the recent microdocumentary.”
Most RET patients, upon cancer progression, will have unknown or off-target (non-RET) progression drivers. It’s critical that the various oncogene groups collaborate to learn more about treatments and trials that have the potential to benefit different oncogene patients, increase our collective visibility, and raise more medical research funding.
Learn more: https://www.oncogeneresearch.org. Follow OCR on Facebook (open to advocates as well as patients and caregivers), Instagram, and Twitter.
Young Lung Cancer Initiative (YLCI) provides visibility, empowerment, and hope for young adults (diagnosed at age 50 or younger) and families dealing with a lung cancer diagnosis. YLCI was co-founded by EGFR exon 19 nsclc patient Lindi Campbell, fellow EGFR exon 19 nsclc patient Leah Phillips, and caregiver Bianca Bye, whose world was upended when her Mom passed away from nsclc and her father was diagnosed with Stage IV EGFR nsclc shortly after.
“I remember researching lung cancer and wondering why I never knew it could happen to someone as young and healthy as my Dad,” said Bianca. “What began as a quest to process and understand the pain in my own life and what my family was going through turned into something much more far-reaching. I wanted the world to see and hear from this patient demographic whose lives had been turned upside down by this disease. I am willing to do all I can to help other young adult patients and caregivers facing this devastating diagnosis. Lung cancer can happen to anyone, and more research is needed to help bring hope in the face of such darkness.”
Worldwide, the rates of over a dozen kinds of cancer – including lung cancer – are increasing among adults under the age of 50. Lung cancer rates are rising among younger never-smokers, particularly women. We are grateful to YLCI for the advocacy and support they are providing to the lung cancer community.
Learn more: https://ylci.org. Follow YLCI on Facebook (open to advocates as well as patients and caregivers), Instagram, and TikTok.