Online Support Group Joins Forces with Registry to Advance Research (January 2019 – Newsletter)

This month, we are excited to announce our partnership with the ALK Positive Facebook Support Group! By uniting our missions, more data means greater potential for patient-driven research. Early-detection survivors and patient-driven groups have joined forces with the GO2 Foundation for Lung Cancer (GO2) to promote research and new treatment options. Much is still unknown about lung cancer; its subsets, ability to outwit drugs, and why so many young, healthy people are getting the disease. Patient advocacy groups - with Bonnie J. Addario at the helm - are closing those gaps.

This month, we are excited to announce our partnership with the ALK Positive Facebook Support Group! By uniting our missions, more data means greater potential for patient-driven research.

Early-detection survivors and patient-driven groups have joined forces with the GO2 Foundation for Lung Cancer (GO2) to promote research and new treatment options. Much is still unknown about lung cancer; its subsets, ability to outwit drugs, and why so many young, healthy people are getting the disease. Patient advocacy groups – with Bonnie J. Addario at the helm – are closing those gaps.

The Lung Cancer Registry provides researchers and clinicians with a data repository on all types of lung cancers—including ALK, EGFR, ROS1, and other genetic subpopulations—that they can use to further research for better treatments and cures.

The ALK Positive Facebook Support Group
Tom Carroll co-founded ALK Positive as a Facebook support group with his wife, Merita, before she died from lung cancer in April 2018. Merita’s legacy lives on in a growing online community that has over 1,200 patients and their caregivers from around the world. ALK Positive and ALCF are working together to encourage members to join the Lung Cancer Registry.

Our United Vision

The Lung Cancer Registry is a game changer,” said Tom. “The registry links patients and their data to doctors and researchers searching for better treatments. We strongly believe patient data provides the key to solving the puzzle of ALK-positive lung cancer. The more patients who take part in the registry, the faster we can move towards a cure.”

“The cure for cancer lies within the patient” said Bonnie J. Addario, 14-year lung cancer survivor and founder of ALCF. “The work that the ALK Positive lung cancer group is doing to advance research for this oncogene, and all lung cancer patients, is critical to creating a paradigm shift. Nearly a quarter million Americans will be diagnosed with lung cancer this year, and this patient-driven resource where patients share their information about living with lung cancer allows scientists and researchers the opportunity to learn from patients first hand.”

Welcome to the Registry!

ALK Positive started promoting The Lung Cancer Registry on September 1, 2018 with the goal of flooding the registry with ALK Positive member registration. To date, we have 91 new ALK+ members who have completed their surveys-- thank you and welcome!

We believe it is within our reach to render ALK+ lung cancer a chronic, even curable, disease.

Together we can make a difference as we continue the fight to end lung cancer.

Sandra Shaw
Director, Patient Registry
Bonnie J. Addario Lung Cancer Foundation
This email address is being protected from spambots. You need JavaScript enabled to view it.
www.lungcancerregistry.org