Lung Cancer Advocacy/Support Groups

In Memory of Karen Parles

After an eleven year struggle with non-small cell lung cancer, Karen Parles died of complications of her illness in the early morning hours of February 16, 2009.

She dedicated her life and her energies to the well being of her family and friends, and to improving the quality of care and information provided to people living with lung cancer. Upon Karen’s diagnosis in 1998, lung cancer was a stigmatized disease, and her children were eight and seven years old.

Patients were treated largely as orphans by the establishments that allocated resources to care, research and outreach. Celebrities only died of cancer, never of lung cancer. Karen harnessed her outrage over this state of affairs to drag forward the leading edge of change.

She started this website (www.lungcanceronline.org), joined support and advocacy groups, served on national and local committees with leading lung cancer specialists, coauthored 100 Questions and Answers About Lung Cancer, and directly answered the questions of thousands of patients across the globe regarding issues related to living with lung cancer.

For her efforts she was awarded a Bicentennial Medal by Williams College, her alma mater, and the Catherine Logan Award for Service to Survivorship by the National Coalition for Cancer Survivorship. Her greatest reward, however, was living long enough with lung cancer to see her efforts bear fruit.

Lung cancer patients now receive greater respect as well as more and better information about their illness, lung cancer research is more appropriately funded, celebrity deaths are now attributed to “lung cancer”, and her children are now adults.

Ann's NOTE: I had the pleasure of meeting Karen in June 2003 in New York City at the first Cancer on the Internet international meeting. She and I were among the several advocates present. She was a terrific force for good and will be missed.


Alliance for Lung Cancer

LINK to patient group

National Lung Cancer Partnership

LINK to group (formerly Women Against Lung Cancer)

Global Lung Cancer Coalition

LINK to group of international member organizations: Alliance for Lung Cancer Advocacy, Support, and Education – Italian Chapter (ALCASE Italia) Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE) Alliance for Lung Cancer Awareness, Support and Education (ALCASE Canada) Australian Lung Foundation British Lung Foundation Canadian Lung Association Cancer Advocacy Coalition of Canada Cancer Research and Prevention Foundation CancerCare German Cancer Society (Deutsche Krebsgesellschaft e.V) La Asociación Española Contra el Cáncer La Ligue Nationale Contre le Cancer Lung Cancer Information Center Roy Castle Lung Cancer Foundation Tribunale per i Diritti del Malato - Cittadinanzattiva West Japan Thoracic Oncology Group

LungCancer Online

LINK to excellent organization for those with lung cancer

Lung Cancer Information Resource

LINK to resource for info on lung cancer,causes, diagnosis, prevention & legal options.

Uniting Against Lung Cancer

LINK to group funding Lung Cancer research, changed name from Joan's Legacy to Uniting Against Lung Cancer

LUNGevity

LINK to lung cancer research funding org

The LCA Survivors Community

LINK to lung cancer group

The MAE Foundation

LINK: In honor of Mary Ann Ellison "provide support & resources to individuals battling cancer that will assist them with their fight".

"Types of therapies can include massage, reiki, yoga, acupuncture, meditation, art therapy, & music therapy. Individuals may qualify for up to $1000 reimbursement annually".

Bonnie Jones's tale of Non-Small Cell Carcinoma

Use of Integrative cancer therapies, 2010 From her email 11/10


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