I share the pain, the shock, and the profound sadness that you feel with wonderful Cheryl being taken at the prime of her life.  It is the kind of event that leaves those of us who were privileged to know her, even a little bit, at a loss for words.  For Cheryl's family and close friends, the pain must be unimaginable.

Cheryl was and remains beloved within the Exon 20 Group at ICAN, the International Cancer Advocacy Network, which is the advocacy organization that worked with Cheryl and the tireless Sandy for the past two years. 

The very rare gene mutation, exon 20 insertion, is found in some lung cancers as well as 24 other cancers. This disease is usually diagnosed in those who have never smoked and are physically fit, and who have done everything right. Exon 20 has nothing to do with an inherited gene--it simply strikes out of the blue and accounts for 2% of Non-Small Cell Lung Cancer cases.

ICAN has seen an outpouring of love and affection for Cheryl and tremendous support for the program in her memory, the Cheryl Silver Kitchner Advocacy Program at ICAN.

It's clear that Cheryl was a superstar at HKS, touching so many people across the country.  She brought to the Exon 20 Group her powerful and compassionate coaching skills and her abundant "life savvy" as well. She was our chief motivator and helped so many of our patients. She co-moderated a special Facebook group for us, keeping everyone energized and upbeat. You would never have known that Cheryl was experiencing cancer or cancer treatments herself.  She was a superb patient advocate and program planner.

Cheryl did absolutely everything right to extend her life with the highest quality of life. And with her every minute of the journey was the indefatigable, creative, strategic thinker Sandy.  Sandy, if there was a Mount Rushmore of Spouse Advocates, you would be on it.

Carli, Richie, Charlie, and Andrew, I want you to know that Cheryl and Sandy left no stone unturned in their fight for her life.  No one could have done more. What was missing, sadly, is that the drug pipeline is still not at the level that we need to turn this vicious and ever-evolving cancer into a chronic and maintenance disease. 

We are trying to tackle that issue with our new international research consortium of exon 20 scientists and research oncologists. The donations we've received for Cheryl's advocacy program at ICAN will help us provide additional advocacy services for patients and push research forward.

We will continue this fight in Cheryl's cherished memory and not leave this battlefield until we can relentlessly defeat this cancer and call it "cured."

May her memory be a blessing.

Marcia Horn, Director of the Exon 20 Group

---