An advocate’s rewarding experience at the NIH Clinic

/An advocate’s rewarding experience at the NIH Clinic

An advocate’s rewarding experience at the NIH Clinic

By |2013-08-09T16:32:23-04:00August 9th, 2013|Advocacy, Events, News, Pediatric GIST|
NIH Clinic Participants

NIH Clinic Participants

From the moment I landed at the Washington Reagan Airport to the time I took off to fly back home, the Pediatric and Wildtype GIST Clinic at the National Institutes of Health (NIH) was a whirlwind of information and memorable events. I attended the clinic with Sara Rothschild as representatives for the Life Raft Group, and it was my first time attending the GIST clinic. I was excited to get the opportunity to meet other Pediatric GIST patients.

My goal was to present a project idea to the CPGR (the Consortium for Pediatric and Wildtype GIST Research), which is a group of leading GIST experts who gather to discuss patient data for Pediatric/Wildtype GIST. Presenting a project sounded easy on paper, but when I walked into the room and read all the doctors’ nametags, something similar to a star-struck awe washed over me.

To understand me a bit more, I’m a Pediatric GIST survivor of 12 years and have been dealing with Carney Triad tumors for 14 years now. I became a full-time patient advocate in 2005. Three years ago, Jerry Call pulled me into the LRG Science Team and ever since then I have received hundreds of emails with the latest published research articles on GIST. All the doctors in the room were names I had read dozens of times in those articles. They are the superstars of the GIST world. Unfortunately, that was when I realized I would be speaking in front of all of them! Luckily, for me, I got the chance to listen to some of the research and see some of the data analysis before I had to present anything, so my nerves had a chance to calm down.

The extent of knowledge in the room was incredible. Due to recent findings in Pediatric/Wildtype GIST, the amount of hope for finding a treatment was uplifting. A highly effective treatment for our type of GIST has yet to be found, but I left the meeting feeling as if the doctors were making great strides in gaining a better understanding on how different our tumors are, compared to the more common GIST types. It may be a small step forward but I’ve always lived life thinking that all great accomplishments start out as small steps before they turn into giant leaps.

I managed to present the LRG project without letting my nerves get to me, and I was deeply humbled when some of the doctors that approached me afterwards shook my hand and complimented my efforts. We didn’t have much time to discuss things though, because the patients of the clinic were waiting for us to join them at the Children’s Inn before dinner. It was there that Dr. Pappo explained Pediatric/Wildtype GIST to the patients and their families. I will never forget the collective gasp that filled the room when he explained that 0.06/million people was the rarity of pediatric GIST. I think it was then that many realized having so many wonderful doctors and scientists focused on our type of GIST was something extremely special.

The following day, I spent time with the other patient advocates. We were supposed to help patients find the locations of their appointments, but the clinic was so well planned our help wasn’t all that necessary. Our task soon switched to sharing our stories and experiences while the patients waited to go to their next appointment. It was there that another shock of rarity presented itself to me.

I had the chance to meet a fellow Carney Triad patient that had all three tumors like me. There are less than 35 of us known to the world, so to be able to talk face to face with another person like me was the highlight of my visit.

The NIH Pediatric and Wildtype GIST Clinic is a one-of-a-kind special gathering. Not only does it pull together doctors and focus them on a rare cancer, it also provides patients the opportunity to meet face to face with other patients like them. After years of talking through computers and phones, I can say without a doubt, nothing beats the special connection felt when arms wrap around you in hugs of support by a fellow survivor. I hope that others will be able to experience what I have at this clinic, and I hope that the clinic will be able to continue as long as it is needed. Most importantly though, I hope that the efforts of such a clinic will pay off and that a cure will be found for us all.

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