In June of 2013 I had the opportunity to hear Tom Brobson speak about his participation in the University of Virginia’s Artificial Pancreas Project. I was familiar with the AP project progress over the years and had gone to other JDRF research updates involving AP studies. I had watched some of Tom’s videos (read: A LOT), where he spoke of his experience, showed off the equipment and explained how everything worked. I was already in awe. Seeing the presentation in person though, that was different. No longer just inspiring and exciting, I wanted to be more INVOLVED.
After Tom’s presentation, people in the audience started chatting with him. I got in line. Both of the people ahead of me asked about the technical parts of the artificial pancreas (AP), the companies involved and projected time lines. I had a different motive. I wanted to hug Tom. Yep. Hug a stranger I knew from AP videos. I wasn’t sure how he’d react but he seemed so down to earth and personable. To me (and I’m sure many other people), this man was already an incredible part of diabetes history. When it was my turn, I asked him to take a photo with me. So humble, he asked if I wanted to hold the AP Android phone as he moved away. No, I explained, I wanted a photo with HIM. I hugged him and didn’t want to let him go. Tom has been part of something so very many T1Ds dream about becoming a reality, he seemed like magic.
As I left the presentation, I spoke to a friend who worked for JDRF, about the whole experience and how inspired I felt. I had tears in my eyes and a lump in my throat. I was overwhelmed with excitement over the AP progress. I told my friend how much I would love to participate in these trials, as Tom had spoken about how participants were needed. I too wanted to be a guinea pig to further the AP cause. My friend told me he wanted to do the same thing and had recently gotten on the AP volunteer list for clinical trials at the University of Virginia. Bingo. I was off and running. Within days, I too was on the list.
I periodically spoke with the UVA co-ordinator. There were opportunities to participate. The University of Virginia is far from New York City. I was determined that if they could use this T1D body of mine, then I’d get my butt (and pancreas) to Virginia. I qualified as a potential candidate, along with my friend, for a trial. We worked out all the details and factored it into travel plans for Thanksgiving. There was paperwork, and more paperwork. Then, things got delayed but other trials were progressing. Patience!
In February 2014, an email arrived. Enough UVA AP progress was made that the study I’d been hoping to be in, was closed and I wasn’t needed anymore. Yay AP progress, boo hoo I wasn’t going to be a participant (I know, I’m a jerk, but I really wanted to be in the trial). My heart sunk into my stomach, my pancreas frowned a little bit more than usual. I had been so excited and motivated to be in a clinical trial, to take what I’d hoped was my next step as a diabetes advocate. I wanted to cry but I was at my endocrinologist’s office.
The last sentence of the email mentioned a possibility of an artificial pancreas trial in New York City.. WHAT?!?! And the doctor involved was MY endocrinologist. I was waiting IN my endocrinologist’s office as I read it. Yes, it was bizarre and incredible timing.
Now, it’s November and I AM a PARTICIPANT in the AP clinical trial. Next up? Learning a new pump, collecting data and getting ready for CLOSED-Loop!
If you would like more information on participating in an Artificial Pancreas clinical trial, the email address for trials at UVA is: email@example.com . The contact person for the trials at Mt. Sinai (New York City) is Camilla Levister who can be contacted at: firstname.lastname@example.org. Also for more opportunities to participate in clinical trials within the United States, information can be found at: http://clinicaltrials.gov/
Love this, so much! Thank you so much for sharing this, Alicia, and for being a part of the AP research that is doing so much for all of us. Wishing you well as you get connected to the closed loop, and can’t wait to hear how it goes!
oh Alecia……this just brings such tears to my eyes and joy to my heart – So glad you are involved in this!! much love, Sara
We saw Tom in Houston last month and he persuaded me that the AP is a real deal. Most impressive was the report that T1Ds wearing the AP have great A1c results, around 6.1 to 6.3 on average, Very excited for you and looking forward to reading about your experiences. Hope to have a chance to wear one myself someday. Good luck to you and thank you!