Take the PKD Foundation Challenge

By Jill Panetta, Chief Scientific Officer, PKD Foundation

Polycystic Kidney Disease (PKD) Awareness Week has been designated the week of June 18 to 24, 2012.  This week allows the PKD Foundation to be able to fulfill part of its mission to people with PKD — to increase awareness of a disease which few know about and raise the understanding and the impact that PKD has on patients and their families.

Jill Panetta

Jill Panetta

Autosomal dominant polycystic kidney disease (ADPKD) is a hereditary systemic disorder that most notably affects the kidneys, causing bilateral renal cysts and loss of renal function.  PKD is relentlessly progressive. As the disease develops, cysts appear on both kidneys and the kidneys themselves enlarge, often up to five times their normal size. Hypertension and pain are common. Patients usually become symptomatic after the age of thirty to forty when the latent disease begins to show itself. As the kidneys begin to fail, patients suffer life threatening cardiovascular disease, including aneurysms, strokes and heart attacks. For the half of PKD victims that develop kidney failure, dialysis and transplantation are the only available treatments.

Accelerating Treatments to Patients (ATP)

The Polycystic Kidney Disease Foundation’s mission says it best – discover treatments and a cure for PKD; improve the lives of those it affects. Continuous progress has been made toward these goals, thanks to the PKD Foundation’s efforts to harness the best minds in science, recruit the finest research talent and foster understanding of PKD within the clinical setting. The PKD Foundation’s significant and productive investments in basic PKD research are now ready for harvest. The field of PKD is ripe for a significant growth in translational research and development that will more effectively harness basic discoveries and spawn new therapies for PKD.

With so much at stake for people with polycystic kidney disease, the PKD Foundation has launched its Accelerating Treatments to Patients (ATP) program.   ATP is a holistic integrated research and development initiative that was launched over 2 years ago.  Each program within ATP touches one of the following areas:  new discoveries in basic PKD science, the development of potential clinical candidates through a drug repurposing strategy, development of registration endpoints for clinical development, support of clinical trials through education and awareness programs and scientific meeting support.

The Foundation cannot do this work alone.  We are committed to pursuing all promising avenues, leveraging assets and building significant collaborations and relationships.   Through the Foundation’s tissue donation program, PKD patients who are undergoing a nephretomy have the opportunity to donate their kidney(s) to basic science research labs, thus allowing patients to make a difference and help move the research forward in the understanding of disease pathways and mechanisms involved in disease expression.  Partnering with the biotech and pharmaceutical industries is critical to the success of the drug repurposing program and accelerating the development of treatments to patients.  Another example of the Foundation bringing researchers together is the PKD Outcomes Consortium, a collaboration between the PKD Foundation, Critical Path Institute, members of the pharmaceutical industry, PKD investigators/clinicians, and the FDA with the goal to facilitate clinical trial development through the development of registration endpoints.

To learn more about the Foundation and its education and awareness programs, what it is doing to support research and find treatments for patients, and clinical trial opportunities, please visit www.pkdcure.org.

Mark your calendars for PKD Awareness Week June 18 to June 24 2012 and join us in our fight against this devastating disease.

Listen to a podcast with Gary Godsey, President and CEO of the PKD Foundation.

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4 Responses to Take the PKD Foundation Challenge

  1. Jana Gardner says:

    I had a bilateral nephrectomy 4 yrs ago and tried to get the old foundation to work with my surgeons so that my kidneys were donated for PKD research withe the PKD foundation. I had a very difficult time correlating and felt like I was told one thing by my drs then my kidneys just wound up staying at Texas Tech for research. That was not what I Wanted…but was too sick to see why they weren’t going to the PKD foundation after. There was poor communication. :(.

    • Dear Jana,
      It is disappointing to learn that your wishes were not met. As Dr. Panetta mentions in this article, tissue donation is an integral part of the PKD Foundation’s ATP program. Our hope is that all of these components under the ATP “umbrella” move us toward a real breakthrough in the treatment of polycystic kidney disease. As a member of the development team at the PKD Foundation, please accept my thanks for your post and your candor.

  2. Aravinda Nanjundappa says:

    Dear Jill
    I have PKD and would like to open a chapter in WV and also would like to know if there is an annual convention for PKD in the year 2012 or 2013 Please advise

    Aravinda Nanjundappa, MD

    • Dave Switzer says:

      Thanks for your note Dr. Nanjundappa.

      As the Vice President of Education for the PKD Foundation I can tell you we are working on a convention for 2013. This will most likely be a virtual convention which can be “attended” online. However, we are also looking at the possibility of reviving our in-person convention in the future.

      As for your interest in starting a chapter in West Virginia, we welcome the opportunity to discuss this possibility with you. If you would be kind enough to shoot me your contact information at daves@pkdcure.org, I will make sure the appropriate people in our organization are made aware of your desire to start a chapter.

      Thanks for your interest in the PKD Foundation.

      Dave Switzer

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