The National Hemophilia Foundation (NHF) held its 10th annual Leadership Weekend event June 13-15, 2008, at the Doubletree Hotel in Fort Lee, New Jersey. The weekend was planned with one main goal in mind—addressing the challenges faced by the chapters and providing as many resources for success as possible. Nearly 100 staff and volunteers from 36 chapters attended the event.
After previewing the powerful film, “Bad Blood: A Cautionary Tale,” a documentary on the contamination of factor product from the pooled blood of unscreened donors in the 1980s and 1990s, Val Bias gave his first speech to the chapters since becoming NHF’s CEO in May. The film served as the springboard to action that Bias is advocating for the entire organization—NHF’s role as the guardian of the nation’s blood supply and educating people about why that is important. “We have never told this story to the average American,” Bias said. “We need to let people know of our sacrifice.” That sacrifice paved the way for all Americans to feel safe when it comes to receiving plasma or units of blood when they undergo surgery or cancer therapy, he added.
Bias encouraged the entire bleeding disorders community to join him on this unified mission, “getting on the same bus, going in the same direction” and facing the future with hope. “We have so much to be proud of. You can see it in the faces of the NYLI, who are outstanding leaders in their own right,” said Bias. “I believe we can do anything—that’s the bar I set.”
Attendees were then briefed on the results to date of NHF’s Chapter Reorganization. Later in the meeting they were updated on plans for the new Chapter Services Department. “The department will work primarily with chapters to help them meet unmet Chapter Standards,” said Joe Kleiber, NHF Vice President for Chapter Services. “It will also focus on areas critical to chapter growth, such as Board development.”
The remainder of Friday’s sessions helped equip chapters with tools to tackle the new 990 IRS form, pitch their messages to the media and share suggestions on improving NHF’s Web site. Chapter leaders received updates on Team Hemophilia on Tour and the five pilot hemophilia walk sites, NHF’s current fundraising and awareness campaigns. They also heard about Project Red Flag’s successful “VWD Signs and Symptoms Media Tour” launched in 19 media markets across the country. PR experts told participants that personal stories can have a powerful impact. “This community has many powerful, compelling stories that make good copy,” said Jeff Hoyak of MCS Public Relations.
On Saturday, NHF introduced its new five-year fundraising campaign, “Campaign for our Future.” Eddie Williams, Vice President of Biopharmaceuticals for Novo Nordisk, the lead benefactor, presented a $400,000 check to NHF—the first installment of a $2 million pledge, jump-starting the campaign. Representatives of each affinity group signed an enlarged proclamation of the campaign’s vision, which will be placed in a prominent place at NHF’s office in New York City. NHF’s Advocacy Department then conducted the session “State Advocacy Needs Assessment: How Can We Help You?” This was followed by a presentation on human resources policies and employment issues. After a networking lunch, two tracks were offered—one for chapter staff, the other for chapter volunteer leaders, conducted by NHF’s board leadership.
This year’s Final Night Event was a trip to one of New York City’s hottest tourist attractions—Madame Tussauds. Attendees boarded buses for an evening at the wax museum in the heart of Times Square. NHF’s Board of Directors met on Sunday.
“This meeting was an important step forward, as it is clear that NHF is entering a new phase in our maturation as a national agency serving individuals with bleeding disorders,” said Kleiber. “Full collaboration between NHF and our chapters will be critical to our success. We at NHF look forward to working with chapter leaders as that process moves forward.”
NHF thanks the following for their generous sponsorship of Leadership Weekend 2008:
Presenting Sponsor, Baxter; Platinum Sponsor, Bayer; Gold Sponsors, CSL Behring, Novo Nordisk and Wyeth; Silver Sponsor, Talecris; and Bronze Sponsors, Hemophilia Health Services and Hemophilia Alliance.