Pkd Foundation

“Significant changes to the organization's bylaws were made during the year, including reducing number of committees and clarifying roles of committees and panels.”

“The form 990 is prepared by an independent accounting firm. Prior to filing the form 990 for pkd foundation, a draft copy will be provided to the board of directors for review and comment. Any comments will be accumulated by management and addressed accordingly prior to filing with the irs.”

“Members of the board of directors of pkd foundation are required to sign an annual statement disclosing any conflicts of interest. The executive committee reviews the statements and ensures that board members are prohibited from participating in discussions or decisions related to transactions that involve actual conflicts of interest. Employees are required to sign an annual statement disclosing any conflicts of interest. These documents are reviewed and conflicts are mitigated by the ceo.”

“Annually, the executive committee works with the ceo to develop the ceo's goals for the new fiscal year. At the end of each fiscal year, the executive committee evaluates the ceo against these goals and determines merit and bonus levels based on their review. Annually, the executive committee reviews a national nonprofit compensation report for comparability data for the ceo salary. After a full review of performance and comparability data, the executive committee votes to approve any salary increase and bonus.”

“The organization makes its governing documents, conflict of interest policy and financial statements available to the public on their own website and upon request.”

“Pkd foundation contracts with adp totalsource to provide certain Employee benefits and payroll services. Employees are considered to be Jointly employed by both pkd foundation and adp totalsource. In order To comply with transparency directives as a part of the form 990, the Foundation has decided to report compensation in part vii to include AMOUNTS PAID AND REPORTED ON W-2'S BY ADP TOTALSOURCE.”

“Research: since its founding in 1982, the foundation has invested more than $50 million in research, clinical and scientific grants, awards, fellowships and scientific meetings, making it the largest private funder of polycystic kidney disease (pkd) research. The foundation's financial commitment over the years has seen results on a local, national and even global level, including initiating funding for young investigators from around the world; supporting innovative research ideas; and providing seed funding to allow researchers world-wide to apply for larger national institute of health (nih) grants. Initiatives included in research are outlined below. Research grants: support for basic laboratory research aimed at increasing understanding of the genetic and pathological processes involved in pkd as well as research with an obvious or direct potential to accelerate the development of potential therapies. Research fellowships: support and recognize early-career scientists whose achievements and potential identify them as rising stars - the next generation of scientific leaders in pkd research. Our fellowships aim to attract promising trainees who will obtain significant research experience as they initiate and - we hope - spend long and productive careers in pkd research. Pkd outcomes consortium (pkdoc): a significant collaboration between the foundation, critical path institute, representatives of the pharmaceutical industry, pkd clinicians, and the u.s. Food and drug administration (fda). It was created to facilitate clinical trial development for pkd therapies by establishing a clear regulatory pathway for the pharmaceutical industry to evaluate the effectiveness of potential treatments. Adpkd registry: an online, direct-to-patient, longitudinal registry for individuals diagnosed with adpkd in the united states. The registry also provides targeted clinical study recruitment for both academic and industry-sponsored studies in patients.”

“Awareness and advocacy: the foundation uses marketing to increase disease awareness, promote the foundation's services, and inspire the public to support the foundation's mission. Marketing materials include pkd life magazine, a monthly email newsletter, social media, the pkd blog, and pkdcure.org. In addition, foundation representatives and volunteers directly engage legislators to encourage support of legislation that increases funding for and awareness of pkd. The foundation advocates for pkd patients in policymaking, drug development, and regulatory decision-making at the state and federal level. Our goals are to raise awareness and further legislation, regulation, and federal funding opportunities that improve the lives of everyone in the pkd community”

“Education and support: the pkd foundation supports the pkd community through more than 55 volunteer-led chapters across the united states. Chapters provide meaningful opportunities for the local community to gather together to learn from experts or in support of each other. Chapters raise funds for the foundation through events like cocktails for a cure and the walk for pkd, the foundation's signature event to raise funds and awareness. Walks take place in more than 50 cities across the nation each year and have raised over $33 million since 2000. On a national level, the pkd foundation empowers pkd patients and caregivers to manage pkd while maintaining a high quality of life. The foundation provides resources across the continuum of disease progression for patients, caregivers, parents, etc. Resources include webinars, enduring webcasts, videos, a comprehensive website (pkdcure.org/education), handbooks and other print materials. The annual pkd national conference (pkdcon) is the foundation's largest education event bringing together the entire pkd community including, patients, caregivers, volunteers, researchers and clinicians.”

“The organization has not changed its oversight process but did change audit firms.”