MY EXPERIENCES AS A STAKEHOLDER REVIEWER FOR THE PKD FOUNDATION

 MY PKD BLOG ABOUT MY EXPERIENCE AS A STAKEHOLDER REVIEWER FOR THE PKD FOUNDATION 

My name is Jim Myers. I am a PKD Kidney Transplant Patient. I was diagnosed at the age of 25, placed on dialysis at the age of 58, and transplanted at the age of 62. I have been a polycystic kidney disease patient for over 41 years. I have lost 5 members of my family to PKD, including my Father. I enjoyed the opportunity to work with the Stakeholder Review Panel because I believe it is my way to contribute to effect a cure and to make life better for my fellow PKD patients.

How did get you involved with the PKD Foundation?

I started dialysis in center in 2012. When I was in my dialysis center, the Congress took steps to cut funding to dialysis centers which would have resulted in a loss of services like nurses, technicians, dietitians & social workers. My clinicmates frequently can into the dialysis lab by ambulance, on gurneys, wheelchairs, on walkers. As an ex-trial lawyer I was offended because this seemed to be heartless to me, like shooting fish in a barrel, hurting people who could not defend themselves. I started a petition on Change.org, wrote to my local newspapers, and joined advocacy groups. One of those groups was the PKD Foundation. I became an advocate for the Foundation because they emphasize searching for a cure for PKD and gave me opportunities to advocate to Members of Congress, and to my fellow PKD patients. I love working with the PKD Foundation.

What got you interested in participating in the research grant review panel?

I had previous experience with the Department of Defense/CDMRP reviewing Grant proposals. I was very pleased to be asked by Elsie Hoover on behalf of the PKD Foundation. I became interested in participating on the research grant panel because I felt that it was a way to make a contribution to help PKD patients and PKD researchers everwhere.

Why do you think it’s important for PKD community members to participate in the grant review panel?

I believe it is important to participate as a member of the PKD Community so researchers get the prospective of actual PKD patients. Patients can best give a vision of how the idea behind the focal point of the research affects the patient based on our past experiences as PKD patients. I feel very strongly that as the persons most affected by the outcomes of the research, it is critically important to get our input while the research is in process. Patient input saves time and money by suggesting modifications to the research that improves the end product/service that is acceptable/useable to the ultimate user and consumer.

How would you describe the research grant review experience to others who might be interested in participating next year?

This is a great experience that is very helpful to both the researchers and patient-consumer. To review the potentially cutting edge solutions to PKD cures, causes & medications gives hope to the patient that steps are being taken to make life easier for the PKD patient.

What aspects did you focus on most while reviewing grant applications?

As requested our primary focus was on the Impact/Significance of the research on the patient. Many of the projects reviewed suggested possible origins of what causes PKD with an eye towards isolating the pathway of PKD in order to discover a cure, a medication to slow or stop the progression of the disease, or the process of PKD development.

Is there anything else you’d like to add about the research grant review process or your experience?

This was a very meaningful experience to me because of the potential to help both researchers and patients. I would love to do it again!

Jim Myers
PKD Foundation Advocate