How NHF Chapters Use Vital Programs to Build Connections

Events hosted by NHF’s chapters raise awareness and provide connection for members of the bleeding disorders community.

Throughout the year, NHF chapters across the country provide vital programs that connect people within the bleeding disorders community and raise much-needed awareness of critical issues. Here, we offer details of successful chapter events.

Hemophilia Foundation of Southern California

In July 2019, about 120 people attended the Hemophilia Foundation of Southern California’s inaugural conference on alternative therapies for pain management. The event filled an important need, says chapter Executive Director Michelle Kim, who notes that community members consistently rate education on pain management as a top priority on the chapter’s annual needs assessments. In addition, ongoing concerns over opioid safety mean there is a growing interest in alternative pain management strategies.

Kim developed the conference program to appeal to the chapter’s diverse community. A key to the conference’s success, she says, was partnering with local experts from inside and outside the bleeding disorders community to ensure participants received the most accurate and up-to-date information. Among the topics addressed were the many types of alternative medicine practitioners; medical marijuana, including how to find and choose quality products; and acupuncture.

From within the bleeding disorders community, Doris Quon, MD, medical director of the Orthopaedic Hemophilia Treatment Center, answered medical questions about bleeding disorders, and Spencer Dunn, MSW, of the Center for Inherited Blood Disorders, moderated a panel on creative strategies for pain management featuring men from the community.

Presentations were as interactive as possible. Attendees were instructed on how to find pain-relieving pressure points, for example, and watched an acupuncture demonstration.

Kim says post-event evaluations rated the conference highly. She also notes the conference was inexpensive for the chapter to produce. It was held at a regional Salvation Army to keep costs down, and the chapter provided takeout food as refreshments.

Learn more about the Hemophilia Foundation of Southern California at hemosocal.com.

Nevada Chapter of the National Hemophilia Foundation

This year marked the fifth anniversary of the Nevada Chapter of the National Hemophilia Foundation’s Winter Wine Fest, one of the chapter’s premier annual fundraising events. Held in Las Vegas in February, Winter Wine Fest brings together the local bleeding disorders community for a fun evening. The 2020 edition raised more than $31,000 for the chapter’s youth programs.

The idea for Winter Wine Fest was hatched in 2015 during NHF’s Washington Days advocacy event, says Nevada chapter member Kelly Lynn Gonzalez. Members of the Nevada delegation were discussing ways to further engage the community back home when Gonzalez mentioned she had experience hosting a wine and silent auction fundraiser. Upon returning home, Gonzalez took the reins, coordinating the elements necessary to pull off the event.

Kaley Dingeman, the Nevada chapter’s development manager, says the event has grown thanks to Gonzalez’s creativity and drive. From a financial point of view, Dingeman says, Winter Wine Fest is successful because the chapter has to invest very little. The venue, furniture, food, wine and silent auction items are all donated. Most of the chapter’s investment is in marketing and little details like baskets and ribbon to make the auction prizes look as appealing as possible.

Dingeman thinks one reason the community has embraced Winter Wine Fest is that it is one of the chapter’s most relaxed and unstructured events. Guests simply enjoy a two-hour wine tasting while sampling Italian appetizers, all while giving back to the local community. The relative lack of ceremony allows everyone to just feel like a guest at a big, fun party.

Learn more about the Nevada Chapter of the National Hemophilia Foundation at hfnv.org.