Sarah Howard
Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.
My crater path was not affected by T1D.
Haha, that’s what I get for not paying attention to the question that comes up and it’s not the one I thought it was.
I have only seen a CDE a few times in my 64 years with T1D. I have learned about research opportunities from online sources such as diatribe.
Yes, I was told about the Joslin 50 Year Medalist Study when I reached the 50 year mark 16 years ago. I’ve also been informed of local research studies conducted at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin.
I have not been involved with a diabetes educator for many years (55+ Years a diabetic). However my endocrinologist has made me aware of studies.
Self managed, self educated. Self pay…The only reason I go to a doctor is for the prescriptions. As someone else said internet searches.
My endocrinologist is the head of research so she is usually the one to bring it up with me, not my CDE.
No CDE and don’t hear about them much anymore. When they started to charge for their services, they started to disappear. With T1D you actually live with the disease, become your own teacher and many times become your own Dr, You could probably teach the CDE something they didn’t know about T1D.
T1 55+ years, haven’t had a CDE since the 80’s, I find Studies Online.
I’ve seen CDEs frequently over my 59 years of T1. i imagine they have but i don’t recall specific cases so i said “other”
My endocrinologist is involved in research so I’m in the loop on opportunities
Yes, I have participated in several pharmaceutical or product studies, including a study many years ago where I got to wear an early CGM. My Endo is usually involved in the research at the university so I hear about the opportunities.
I do not have a cde.
I selected no as I don’t believe that my endocrinologist is a CDE. He has, however, put my name forward for islet cell transplantation … that was in the days when it was still an experimental procedure, and my name was one of the first 50 or so type 1 patients whose name was put forward to the scientists. (Sadly, the operation never came about as due to it being ‘experimental’ they wanted to be able to ‘show’ how successful such a transplantation could be, and I’d already developed a multitude of diabetes-related complications at that stage so it would have been difficult for the scientists to prove just how effective islet cell transplantation could be.)
I serve as a combination diabetes educator and research coordinator and I often will ask patients if they want to take part in a trial where they qualify. Participation is optional.
My first endo was a researcher so he recruited me to be in the inhaled insulin study back in the 90’s. After he retired, I have found the studies that I have been involved in on my own.
I chose NA. I don’t think I have a certified diabetes educator, or if I did, it is not in my memory. After ten years of having a independent Endo, I changed both the Endo and my GP to where my Neuro was located, at a University hospital. I often have interns learning during my appointment after me agreeing to it. My BG has been used for research a few times by another doctor and I am constantly asking my doctors of available research I may be available for in different areas of health. When I had the independent Endo it didn’t occur. I also read clinicaltrials website alot.
I am fortunate to live in an area with clinical trials going on all the time. I got notifications from my medical teams and from the different research centers that have my info on file. They call when something comes up that I might qualify for.