Pkd Foundation

Filing Period

Jul 1, 2012 to Jun 30, 2013

Signed

Nov 20, 2013

Return Version

2012v2.1

Gross Receipts

$9,466,717

Mission

Major Activities

Activity 2

Awareness and advocacy - the foundation raises awareness through marketing and public relations so people can understand pkd, the foundation's services, and how to support our mission. The foundation educates the pkd community through a free magazine (pkd progress), a free monthly electronic newsletter, emails, webinars, videos, social media, the websites pkdcure.org, kidneylink.org, walkforpkd.org, and the blogs pkdhealthnotes.org and pkdwillnotbeatme.com.this year, 1,321 free information packet requests were fulfilled for those just diagnosed or looking to learn more about pkd. Total social media followers (facebook, twitter, youtube) increased by 4,890 to reach 16,150. The electronic newsletter received 72,115 opens, our websites received 517,175 visits and our blogs received 62,383 visits. Awareness is also generated through playing a key role in legislative advocacy to support pkd-related initiatives. United on the hill, a legislative and policy conference in washington d.c., allows advocates to meet with members of congress to raise members' awareness of pkd and discuss legislative priorities. In 2013, 55 advocates attended united on the hill, representing 18 states, and conducted 65 meetings with members of congress.

Activity 3

Education and support -the foundation provides education and support services to local communities through its 60 volunteer-run chapters across the country. Our chapter volunteers bring to life the mission of the organization by ensuring that no one faces pkd alone. Education meetings provide valuable information from health care professionals, while support activities range from lending a listening ear to organized group outings. This year alone, our chapters held 116 education and support events. Chapters raise funds for the foundation through events which also increase awareness of pkd and connect local patients and families to each other. Sixty-five chapter fundraising and third party events were held this year. Chapters also raise awareness and money through the walk for pkd, the foundation's signature fundraising and public awareness event. The walk for pkd takes place in more than 50 cities across the nation each year and has raised more than $20 million since 2000.on a national level, the foundation provides in-depth resources and education about living with pkd to empower people to manage their health. Last year three webinars were attended by 660 people, and a national virtual conference was attended by more than 300 people. In 2013, the foundation sponsored the first national conference for parents and caregivers of children living with pkd and other cystic diseases.

Filer

EIN

43-1266906