This post was submitted by one of our local volunteers and the mother of a son with T1D, Ashley Fisher.
Earlier this month, I had a wonderful opportunity to attend a JDRF Research Summit. The focus of this summit was Transforming JDRF. One of the things I learned was that there are amazing people on the team and within JDRF’s partners who have a close connection to T1D, which is the nickname they would like to start using. Jeffrey Brewer, President and CEO, has a son with T1D. Aaron Kowalski, the Assistant Vice President of Treat Therapies, has T1D as does his brother. One other example is Roy Beck, who is the Director of the Jaeb Center for Health Research who is managing several T1D initiatives, has a son with T1D. He was actually an ophthalmologist and when his son was diagnosed, went back to school to become a clinical researcher. He has also been instrumental in the eye advances for the T1D community. It felt great to know that there were amazing people working on our “cause” that have that personal connection!
The summit focused on the research that is happening in the T1D space. I will try to summarize the projects that JDRF is working on that were discussed during the research.
Cure Treatments, which covers 45% of the spend for JDRF
Treat, which covers 25% of the JDRF spend (glucose control; diabetic complications)
Prevent, which covers 10% of the Spend of JDRF
(Note: Remaining 20% of funds is left for training and exciting funding opportunities.)
As I listened, I thought, how can I help? There were several takeaways that I would like to share.
1) The advocacy efforts have really helped make a difference with the FDA and their recent position on the Artificial Pancreas Project. This effort needs additional help as the Special Diabetes Program is up for renewal. This is essential for JDRF to work on all the great research they have on their roadmap. NIH and this bill help by doing research on the cause of diabetes, and several other essential studies. If this money does not come through, JDRF will have to take the must-do projects from NIH and find a way to keep them going, which will impact the existing projects.
2)The director of the TrialNet center explained how some of these projects were taking an excessive amount of time to recruit people, causing the lifetime of the projects to be approximately 10 years. Faster recruitment will lead to faster research output, so I ask that all T1D families look into participating in Trialnet. There is additional information at the following link - http://www.diabetestrialnet.org/PathwayToPrevention/index.htm
3) Another amazing program that was review was nPOD, which stands for the network for Pancreatic Organ Donation. This is a sensitive subject, but I do think this research could really help to understand the following questions: what causes T1D, why this disease is on the rise, why some people find it harder to manage than others, and so many more questions. One misunderstanding is that people with T1D can become organ donors, and inform family that they want to donate and participate in nPOD. For additional information, you can visit - http://www.jdrfnpod.org/
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