PKD Foundation Annual Report 2013-2014


PKD Foundation Fiscal Year 2014 Highlights

Frank Condella, Jr.Throughout this report are many impressive numbers and facts about what the PKD Foundation has accomplished this past fiscal year. What I'm most impressed about, though, is how much has been achieved in just 12 months. This was only possible through the dedicated staff, volunteer leadership, donors and supporters in the PKD community.

Some of the highlights that stand out for me are:

  • Fifteen research grants were awarded out of 51 submissions at a commitment of nearly $2.4 million during 2014 and 2015. Five are focused on therapy development for a treatment, and 10 are on discovery research. This promising work will make a big impact in getting us closer to treatments and we're proud to support these researchers.
  • Our dedication to funding research was recognized publicly by Genetic Engineering and Biotechnology News. We were ranked by them as among the top 30 grant-giving disease foundations (#17 in the nation).
  • The PKD National Convention was a big success with nearly 300 people, including top researchers and physicians attending. Several research grant recipients shared poster presentations and spoke one-on-one with attendees, and speakers provided updates on the latest in PKD-related developments. This was a unique opportunity for researchers, physicians and patients to meet, and people felt more connected because of the event. Several clinical trials were announced at the event as well, providing people new opportunities to get directly involved in research. We continue to promote these through our CTAP program (Clinical Trials Awareness Program).
  • A new clinical database of patient data was created from PKDOC (PKD Outcomes Consortium) that will have a powerful impact on clinical trials for ADPKD. The PKDOC's final qualification package was sent to the FDA in March for approval of total kidney volume (TKV) as a clinical trial endpoint.
  • The Foundation contacted researchers on behalf of 15 patients wanting to donate tissue to PKD research. Having this tissue is invaluable for researchers to learn about PKD.
  • In drug repurposing, two drug candidates completed initial screening, and one that showed effectiveness in one animal is moving to another model. The Foundation received six inquiries from new companies about potential candidates for screening. This is exciting progress for potential therapies.

These are just the highlights. There are so many other accomplishments that are shown throughout this report that I invite you to read. From cover to cover it is full of good news about the work being done and the people who are making a difference. You are one of those people. On behalf of the Board of Trustees, thank you for all you do to support the Foundation in helping us end PKD.  Please continue on the journey with us as we look forward to what the next year will bring.

Thank you,
Frank Condella signature
Frank Condella
Board of Trustees Chair
PKD Foundation

PKD Foundation

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