2012 Year in Review

2012 was an exciting year for the PKD Foundation! Thanks to your generous support, we made great strides in many areas. Take a look at some of the highlights of what we accomplished together this year.

In 2012 we…

Accelerated treatments to patients.

Through the Drug Repurposing program, five promising drug candidates were evaluated using three animal models with renal cystic disease, including one related to ARPKD (these studies are ongoing and in various stages).
Researchers were contacted on behalf of patients 17 times for potential kidney donations through the Tissue Donation Program. This allows patients to actively participate in research.
The Foundation went from funding two to three core labs. The third, the PKD Research Biomaterials and Cellular Models Core, is being led by Darren Wallace, Ph.D. at the University of Kansas Medical Center.
In November, an in-person meeting with the Food and Drug Administration (FDA) took place to review the PKD Outcomes Consortium Project (PKDOC) analysis. The goal of this initiative is to receive regulatory approval to use Total Kidney Volume as an outcome measure in PKD trials. The meeting was productive, and after further work in response to feedback from the FDA, we anticipate a formal submission in early 2013.
We informed more than 30,000 people on how to participate in clinical trials.
Results of the Tolvaptan TEMPO 3/4 trial were shared in October by Otsuka Pharmaceutical Co. LTD, including on the New England Journal of Medicine's website. Promising outcomes from the study show that the drug slows progression of the disease in humans. The Foundation played a key role in developing the treatment by funding and supporting research that made this breakthrough possible. Learn more about this exciting development.

Educated you on PKD.

Five webinars were attended by 750 people. Topics included clinical trials, research updates, living positively with PKD, kidney transplants in children, and the Affordable Care Act. Watch the webinars.
The first online national conference "What's New with PKD" was held in partnership with the PKD Foundation's New England Chapter. More than 200 people attended from 15 Chapter locations nationwide.

Came together to end PKD.

$1.8 million was raised by nearly 10,000 participants in 50 local Walks for PKD. View the event photos.
New Chapters were launched in Louisville, KY, Mississippi and New Orleans.
More than 1,000 people who support 52 volunteer-led Chapters were recognized during Volunteer Appreciation Week in April. Volunteers donate more than 900 hours each year, equaling nearly $220,000.
Throughout the year, more than 50 local fundraising events raised over $516,000 to support initiatives to accelerate treatments to PKD patients. Events included Run for PKD, Miami's annual Casino Night, Memphis's annual Driving Home a Cure golf tournament and Chicago's Sterling Bay Benefit Bash.

Advocated on Capitol Hill.

In June, 41 people including 22 new advocates representing 14 states conducted more than 40 meetings on Capitol Hill during the United on the Hill event. At this legislative and policy conference, Foundation leaders and PKD community members meet with members of Congress to raise PKD awareness and discuss legislative priorities.

Raised awareness.

Print ads were placed in 280,000 magazines in October. These ran in Good Housekeeping, Redbook and Woman's Day in Atlanta, Kansas City, Las Vegas and Little Rock.
Ten billboards were placed in North Carolina in December.
President and CEO Gary G. Godsey was interviewed on the Renal Support Network's online radio talk show, KidneyTalk. He provided an overview of polycystic kidney disease and explained what the Foundation is doing to help find treatments and a cure. Listen to the podcast.
Our Facebook fanbase grew to nearly 11,000 people.
We participated in #GivingTuesday, a social media movement to create a national day of giving at the start of the annual holiday season. More than $2,000 was raised on this day using the Text to Donate program.
We created the successful social media campaign, 31 Days of PKD Challenges, to celebrate March's National Kidney Month.
We celebrated PKD Awareness Week in June – a full week devoted to raising awareness and educating the public on polycystic kidney disease.

Welcomed new leadership.

New Chief Development Officer Michelle Davis came on board to develop a strategic resource development plan. She established a new team, including adding Director of Chapter Services and Corporate Relations Director positions.
Chief Marketing Officer Angela Connelly was hired to develop a marketing and communication strategy to increase awareness and engagement.
CEO and President Gary G. Godsey celebrated his first anniversary at the Foundation in November. Read his letter about what 2013 promises.
Meet the rest of the leadership team.

Michelle Davis Angela Connelly Gary G. Godsey

Turned 30.

In August we celebrated 30 years since our founding in 1982. That's 30 years of helping improve people's lives by advancing PKD research, providing support and education, and advocating for important legislation. Take a look at our 30-year progress.
Since 1982, we've invested more than $31 million in more than 550 research, clinical and scientific grants, fellowships, scientific meetings and education programs.
View our 2011-2012 Annual Report to see how your money was invested.
Thank you for sharing in our accomplishments in 2012. We look forward to making even greater strides with you this year!