Lung Cancer – a cancer with highest mortality across the world but comparative less research and options.
Lung cancer – a cancer with stigma of smoking disease however majority of newly diagnoses cases are non-smokers.
Lung cancer – for which, there is not a single NGO in India unlike many for Breast Cancer, Blood cancer etc. The picture in world is not much different.
Kusum is having a rare type of Lung Cancer which is Non-Small Cell Lung Cancer (NSCLC) with Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement.
To understand Lung cancer & ALK mutation – There are two major types of lung cancer, non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC).
Non-small cell lung cancer accounts for about 85 percent of lung cancers and includes:
- Squamous cell carcinoma;
- Large cell carcinoma
In Adenocarcinoma, there are multiple type of mutations and ALK is one of them.
We do have a global group of ALK positive patients , where three tenets group members live by are Information, Support, and Empathy, no matter where one may be. The group uphold these by providing Worldwide Information about ALK lung cancer to each other. The group members (ALK+ve patients and caregivers) support one another around the globe to improve our physical and emotional well being; and having Empathy towards each other because we are all on this journey together, no matter where we live.
ALK POSITIVE Worldwide, which was created as a Facebook support group by a patient (Merita Carroll) and her caregiver (Tom Carroll) of US, where Non-Small Cell Lung Cancer (NSCLC) patients and caregivers afflicted with the Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement could get support from like patients. NSCLC ALK Positive patients make up only about five percent of all lung cancer diagnoses each year. Our group has more than 800 ALK Positives from all over the world, and growing every day. At Global group, we are now moving to ALK Positive web site (https://www.alkpositive.org/) is a support site with forums for members, and a portal to perform outreach activities that will promote fundraising, improve visibility to potential benefactors of patient-driven fund raising, and increase partnerships with organizations with similar goals. ALK Positive seeks to partner with research entities who are furthering ALK research and treatment options that prolong survivability and eventually attain chronic status for all ALK Positives, all over the world. We want to solve the puzzle of Lung Cancer!
However, in India, we realize that in addition to above there are some critical local/ country level needs which needs to be addressed locally. For ex.:
- ‘Timely and Affordable Access to Latest Treatments for ALK+ve NSCLC patients in India” – This is so critical as life are at stake here and without medicine, how we could be able to save Cancer patients in India. As of today, in many countries, for ALK+ve patients, 4 different generation molecular therapies (TKI) are approved and 24 new medicines clinical trials are going on however in India, we have only approval of two TKIs and new medicine clinical trial ongoing for ALK +ve patients;
- “Better Access to Clinical Research & Research Medicines for Cancer patients including ALK +ve in India’;
- “Better and affordable mutation/ sub-mutation testing facility”;
- “Collaboration with Doctors and Hospitals for better support and treatment”,
- “Raising Awareness about Lung Cancer & ALK +ve” and
- “To identify more patients of this rare type of Cancer in India and connect them to global group”
- To have a updated, validated list ready for NSCLC ALK +ve patients in India, that would not help to support each other but also help Government and Pharmaceutical companies to understand NSCLC ALK+ve disease burden and need of all those latest treatment available in other countries (as delay only cost someone life here in India).
Therefore. we are working & trying to create support for local needs too for ALK positive patients and Lung cancer.
Meanwhile, if you know anyone with ALK+ve NSCLC, please direct them to or Are you a patient or caregiver of someone with ALK+ Lung Cancer?
If Yes – please Join Us!!!
> Facebook group: https://www.facebook.com/groups/alkpositive (A vibrant Facebook group ONLY for ALK Positive Lung Cancer Patients and Caregivers from all over the world, active 24 hours on each & every day)
> ALK Positive Website: alkpositive.org
> Email (Global): firstname.lastname@example.org
> WhatsApp (India): +91 8104000692