A Welcome From Susan Spinosa, NTRKers President, co-Founder and Patient Survivor

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Dear NTRKers Community,

 

 

I want to welcome each and everyone of you. We are a community built of patients, care partners and advocates with one shared mission. Together, from all regions of the world, we unite and support adults, children and families affected by NTRK gene fusion cancer.

 

Cancer is horrible and to have a rare gene fusion driving cancer is beyond scary and can be a very lonely experience. My own journey started in 2004 when I was diagnosed with thyroid cancer. I had so many questions about why my cancer kept progressing despite several rounds of radiotherapy and surgery. I had read about biomarker testing and was convinced there was another test out there. Eventually, I was tested for NTRK gene fusions in 2018, and I was found to be positive. From this point, my care team had more to work with, and it opened up targeted treatment options. However, that is never the end of the story.

 

I had so many questions, and I couldn’t find anyone who understood my experience and situation. I set up a closed Facebook group and found that my journey became our journey. This has provided me with great comfort and the motivation to not only seek answers on behalf of our community but to support ongoing research.

 

No one should face cancer alone. I invite you to continue to explore our website, join our closed Facebook group, follow NTRKers on Twitter and Instagram or get in touch by emailing info@ntrkers.org. We would love to hear from you!

 

 

Sincerely,

Susan Spinosa, NTRKers President, co-Founder and Patient Survivor

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