Precision Medicine

 
 
 

Pediatric Precision Medicine

Through this research, we are developing methods to be able to match each person's cancer treatment to their specific gene profile.  This could lead to huge breakthroughs in cancer treatment both in the effectivness of controling the disease and minimizing treatment side effects.  To find out more about precision medicine, click here

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Dr. Katherine Janeway

Dr. Janeway is the Director of Clinical Genomics at Dana-Farber Cancer institute. She leads the charge for pediatric precision medicine research and has been our clinical partner since the start of Precision for Kids.

 
2016 - One month prior to initial diagnosis

2016 - One month prior to initial diagnosis

2017 - During treatment

2017 - During treatment

2019 - Cancer Thriver

2019 - Cancer Thriver

2019 PFK Event at DFCI - Emma with Captains Mike and Marissa

2019 PFK Event at DFCI - Emma with Captains Mike and Marissa

PFK Pedal Partner - Emma

Team PFK could not be happier to have Emma join our team as an official Pedal Partner. Her experience is what the PMC is all about and she is the perfect spokesperson for our cause. Emma’s smile lights up a room and her attitude towards life is infectious. She is truly an inspiration to us all.

Check out Emma’s webpage here

Emma’s story, as told by her mother at a recent team event:

      Our Warrior Princess Emma was originally diagnosed with a rare renal sarcoma stage 2 cancer in August of 2016 just prior to her 11th birthday. The cancer was intertwined with her right kidney and within days of discovery we had her entire tumor and kidney removed. 21 weeks of intense inpatient chemotherapy as well as 26 abdominal radiation treatments followed Emma’s nephrectomy throughout the course of her first phase of treatment at Maria Fareri Children’s Hospital, in New York where we live. She concluded treatment in early Feb. of 2017 and went into remission for close to 10 months. In November of 2017, after routine trimonthly scans, we discovered that she had relapsed. Emma’s cancer had metastasized into numerous spots in both of her lungs. She now was considered stage 4, with a challenging prognosis as her tumors are centrally located in her lungs and extremely difficult to resect. After getting extra opinions, we resumed treatment at home in January of 2018. Emma once again had a very difficult 6 months of intense treatment from January to June where we weren’t seeing a great deal of stability. Her tumors grew with the two largest of them being the size of billiard balls in each lung. We continued to fight hard yet were preparing for some very difficult times. 

While in treatment the second time around, we actively searched for options to help save the life of our sweet girl. Through the loving suggestion of Emma’s primary oncologist in New York, we were offered the idea of enrolling her tumor specimen in the “Gain Consortium study” through Dana Farber Cancer Institute in Boston.  Through taking part in this innovative trial, we were able to receive a thorough intensive exploration of the genetic makeup of Emma’s tumor cells. It took several months for feedback, but on June 22, 2018 we got the call of a lifetime!  Emma’s oncologist in New York called to share the miraculous news that our angel, Dr. Janeway and her amazing team of geneticists at Dana Farber discovered what we had been searching for. Through the genes of Emma’s tumor, the Genomics department identified that she tested positive for a rare protein. This protein causes her genes to fuse and mutate ultimately forming her cancer. Not only did they figure this out, even better...they had another amazing team of doctors here at Dana Farber, eager and ready to enroll Emma in another clinical trial of a targeted/precision therapy medication to inhibit this protein and reverse things!  So in early July of 2018, we enrolled her in this trial/study to get her on this medication and it has truly been a miracle for us! Thanks to the fine work of Dr. Janeway and the Genomics department, Emma was able to be matched with a medication that has literally saved her life.  It is simply a pill that she takes twice a day with barely any side effects. Her tumors have since dramatically reduced and by the grace of God, Emma is living as a normal 13 year old cancer thriver who is well on the path towards full healing from her rare spindle cell sarcoma cancer. 

 

Precision Medicine Overview

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Research Updates and Success Stories: