The greatest achievements are made by the hard-work, devotion and collective effort of passionate people.
This meeting has been a long time coming. I knew I had one opportunity after 14 years to drive home critical points as the only representative of the patient experience there. When I had been asked to speak, I had said I would not be attending if they did not also include Dr. Helmrath from Cincinnati Children’s Hospital Medical Center Dr. Puder from Boston Children’s Hospital and Marie Newman from the gutsy perspective. I knew I needed people in our corner as I knew that the audience and other speakers would be largely compromised of people, albeit prestigious and well involved with decades of gastroschisis epidemiological and related research, that had not treated nor been around Gastroschisis patients and their families.
My speech was written with that in mind and it was not me (I need to emphasize this) it was each one of you who have shared their stories, reached out to The Global Gastroschisis Foundation for 14 years whose voices I spoke with. I was the last speaker to go, and with each prior presenter who shared their research interests and findings, I knew I was going to turn the room on its head. I had known that going in and I was fearful they would shrug me off. *They did not.* Thanks to videos sent in from Danielle Fergus (adult survivor) Gaby Luna, Madison Heintz, Ashley Leilani Huygens, Christine Fowler and Shawna Ammons, I showed and spoke to the whole room about how off course research has been and the painful struggles our patients actually endure.
My speech centered around “don’t dare leave this room with ideas on how to continue your personal scientific curiosities. The data points you collect are from people living this life and experience out. And they deserve research that improves their lives and suffering.” (It said a lot more than that….lol) When I said “thank you” the room was still and quiet. There was a lot of tears; Dr. Helmrath spoke out affirming the desperate need our patients needed from the research community. The next hours and day swung around to determining research directions OUR patients need. You can see from the topics identified which ones the ENTIRE room stated were a priority; they were YOURS. One physician said “I have been treated this disease for decades, and I feel like I don’t know anything about it.” You all were heard.
In April of this year, I was so incredibly honored to be a keynote speaker at a 2 day meeting on the Public Health Meeting on #Gastroschisis at the CDC Global Headquarters in Atlanta with leading epidemiological and medical researchers on gastroschisis from around the world. I stood up after each prior speaker talked about interesting data points and shared 4 videos from adults on-down to expecting moms. I spoke as clearly that they were asking the wrong questions, and looked at the wrong data- data that didn’t matter to those having to live this. And they listened.
After the 2020 pandemic took so much from everyone and 2021-22 shook my health, 2023 set me back to my roots. 2023 has thrown its best efforts to dissuade efforts- and hard. I am bound and determined to rally the troops and stage the biggest comeback we can muster to propel things even further. A platform for all- all voices matter, all efforts matter. Answer to it. Answer for it. Listen to us, we are here. We set the data points, we live this, we know what is going on because it is 24-7-365. So listen. We’re not going anywhere, and we refuse to be silent.