Hi friends,

It’s time to begin the second leg of this super trip. So with a heavy heart and a heavier suitcase we bid goodbye to OVAC Lobby Day and Washington D.C.

That’s right- we! I wasn’t going to let Erin go just yet, so I packed her along and off we went to Bethesda, Maryland, home of the National Institutes of Health, more commonly known as the NIH.

National Institutes of Health

As many of you may know, GIST is a family of cancers. One of the rarer types to gbe diagnosed with is SDH-deficient GIST, also referred to as “wildtype GIST” due to the ongoing research to try to identify the locations these mutations originate in. For a good definition of wildtype GIST and more information on SDH- deficient GIST visit the LRG’s excellent reference page. Although there are certainly cases of wildtype GIST diagnosed in adults, a large portion of SDH-deficient GISTS are found in children and young adults. There are many, many ways in which wildtype GIST is different than the more prevalent “adult GIST” that is typically diagnosed in patients averaging age 55 and older. In the interest of letting the experts do what they do best, word count and the staff that has to edit this blog post, I will again happily refer you to the LRG science page above to learn more.

It was a bit serendipitous that the NIH Wildtype GIST clinic happened to fall directly after OVAC, because the work these researchers do and the truly unique knowledge and hope they provide families are unparalleled anywhere else in the country. UNFORTUNATELY, cuts to the NIH’s budget  have already seen the Wildtype GIST Clinic have to cut its operation from twice a year to only once annually. My goal between today my next post is to give you an insider’s glimpse into the amazing work these folks do and the lives they touch. Reserve your spot by contacting me @mmenos@liferaftgroup.org  for next year’s OVAC’s Lobby Day so you can make sure this good work continues.

Now before you can get anywhere in the NIH you have to get through some pretty rigorous security and figure out where the heck you’re going. Seriously no easy task for a directionally challenged person such as myself! Guys, this is what we’re dealing with here…I stood no chance from the start.

NIH Campus


THANK GOODNESS for the two patient group representatives I was with, Erin (whom you know from OVAC) and Becky Bensenhaver of GIST Support International (cue angel music). As veterans of the Wildtype GIST Clinic they were zipping around those twists, turns, and random staircases that somehow always led somewhere even when you were sure you were heading straight for a supply closet. I was so happy to be able to spend the next two days with these two. Being wildtype GISTers who have attended NIH clinics as the patient and seasoned patient reps, they provided an invaluable insight into how best to support the patients and families during this often overwhelming time in their lives.

Dr. Helman

Hi, Dr. Helman!

Clinic would officially start the next day but families are always brought together the night before for a presentation by the clinic’s researchers at the Children’s Inn. Although some of the WT Clinic’s researchers are NIH staff, the majority are specialists that give up their own time to fly in from around the country and consult on these rare cases. They represent disciplines from endocrinology to pathology, genetics, surgical oncology, dermatology, psychiatry and everything in between. They are truly invaluable. The researcher chosen to give this year’s Children’s Inn presentation was none other than Dr. Lee Helman, the Clinic’s head! I can’t emphasize enough how much of his heart and soul he puts into this clinic and the huge debt patient families owe to his dedication.

Dr. Helman took the clinic’s families through a fairly high level analysis of the progress they’ve made understanding the field of SDH deficient GIST and the newest trials in progress and on the horizon. I’ll let a selection of his slides do the talking here :)







After Dr. Helman’s presentation next up was our very own Founder and Director of GIST Kids/OVAC Lobby Day Graduate/NIH hall maverick/traveling buddy Erin MacBean! Her presentation marked the official launch of GIST Kids.

GIST Kids logo

That’s right, this is where I insert a shameless plug for www.GISTKids.org. Go visit! Powered by the Life Raft Group it was conceived as a community for young patients as well as the non-patient youth affected by GIST as a result of a loved one’s diagnosis. This is their platform to celebrate their triumphs, engage in fundraising campaigns, spread awareness and education about this cancer through fun projects like game development and to generally find other people their age to whom they can relate.


(Here is a quick snapshot of Erin’s background. See all those logos in the box on the right? No, that isn’t the sponsors list of a major sporting event, that is all the organizations she does volunteer and advocacy work on behalf of. She is a true champion!)

Kids dream big and kid-at-heart Erin and her team are no exception. In addition to launching an obstacle-avoidance mobile game that intersperses video messages promoting GIST awareness, Erin is close to completing a series of presentations that explain the science of cancer and GIST in kid-friendly ways. She even has a (very) in-house review panel vetting these, since if her seven-year old son doesn’t understand it, she gets back to work making it clearer until he does. Future goals include the establishment of a summer camp and a scaled fundraising platform.

After the presentations and a question and answer session the families got to know each other a little better around a pizza dinner sponsored by our very own board member Ray Montague – Thanks Ray!

As for us, after a very long couple of days Erin, Becky and I could think of no better way to unwind than with one of these at post-Clinic staple Guapo’s


Sombrero unfortunately not included.

Buenas noches folks! Thanks for sticking with me through my most science-heavy post yet. I hope you are energized and inspired by all the good work being done in the field, and all the good work still left to do.

Stay tuned for my next post where you’ll get to see the work of the NIH’s Wildtype GIST Clinic in action and meet some of the families who attend it. Until then…

Keep on rafting,