Jacob Murdock, executive director of the National Bleeding Disorders Foundation (NBDF) Nevada chapter. Photo courtesy of the NBDF Nevada chapter

Blood: It Gives Life

The National Bleeding Disorders Foundation Offers Assistance

By Debbie Hall

Blood is vital to life. It brings oxygen and nutrients to organs, fights infections and provides functions for people to survive. But what happens when it becomes diseased or causes medical issues? This is where the National Bleeding Disorders Foundation (NBDF) Nevada chapter steps in, making a significant difference in the lives of individuals with inheritable bleeding disorders across Nevada.

The most well-known bleeding disorder is called hemophilia, but that is not the most common. “We provide resources and support for individuals and families affected by these inheritable bleeding disorders, such as educational events,” explained Jacob Murdock, executive director of the Nevada chapter.

“Our role extends beyond providing resources and support,” he said. “We plan camps for our teens and families, provide financial and mental health therapy support, hold fundraisers and host other unique events. We cover the entire state, hosting events in Las Vegas, Reno, Carson City, Elko and Ely. We provide this extensive range of services thanks to your assistance, which significantly improves the lives of numerous people.”

Stephanie Dupree, the development manager for the Nevada chapter, has been with the organization for over two-and-a-half years and has worked for over 10 years in the nonprofit industry in Southern Nevada.

“I came here [NBDF] to see what I could do to make a difference. And just getting to know the community the past two years, it’s been enjoyable,” says Dupree. “Jacob and I are running this organization and hiring for a third person right now. But with a small organization like this, you wear a lot of hats. I help with organizing and programming events. But my primary role is to make sure that we’re fundraising. We’re raising money through grants, events, and individual giving, ensuring we can do as much as possible to support people with bleeding disorders here in Nevada. Your support is not just a donation; it’s a lifeline for these families.”

Murdock started with the chapter in September 2021. “I’m nearing my third anniversary,” he said. “I have also worked in the nonprofit sector here in Las Vegas for about 15 years. Before that, I worked in higher education administration. I’m responsible for guiding the ship and helping make some of those significant partnerships locally, statewide and nationally to ensure our organization can succeed. I build relationships at the larger level with the local treatment center and some other medical professionals who treat folks with bleeding disorders. I also work on many of our advocacy projects, both statewide and national advocacy. I’m involved in the programming and fundraising events. We’re small. We wear various hats, and we’re an organization involved in the grassroots part of the nonprofit work and some of the higher-level stuff.”

The chapter sends a representative to attend meetings of the Nevada Chronic Care Collaborative (NCCC), which, through advocacy work, helps improve the experience and lives of people with chronic conditions in Nevada.

It’s important to note that the chapter does not provide information on the medical side of bleeding disorders. Hemophilia treatment centers, hematologists, doctors, and other healthcare professionals manage the healthcare aspect.

But for anything outside of medical issues, NBDF helps with social issues, financial issues, connecting people, mental aspects that come with growing up with a bleeding disorder and navigating that transition from childhood to adulthood.

People who have a bleeding disorder need that guidance. It’s a rare condition, and it’s unlikely that people will be able to meet people with that condition in everyday life.

“We provide opportunities for the community to come together, meet and help support each other,” says Murdock.

The NBDF recently rebranded. For the first 75 years, the organization was known as the National Hemophilia Foundation (NHF), created to work primarily with people with hemophilia. However, as medical science has progressed, the understanding of bleeding disorders has progressed.

While hemophilia was definitely and still is probably the most well-known bleeding disorder, it’s not the most common. There are ones that are even rarer.

“The most common is von Willebrand disease, which is one of the reasons why we went through a rebrand: to be more inclusive of the other types of bleeding disorders that are present in Nevada and across the country,” explained Murdock.

“The goal of the name change is to embrace our identity and the desire to find cures for all inheritable bleeding disorders. We also want to make sure that folks with inheritable bleeding disorders can live highly successful and healthy lives. And so, for us, it represents our work.”

According to Murdock, those diagnosed with the disease affect up to two percent of the population. According to the general statistics, nearly 30,000 people in Nevada haven’t been diagnosed with the disease but most likely have it.

The rebranding encourages folks to get tested and spread the word about the symptoms of bleeding disorders so that people can have better access to treatment. Symptoms they thought were “normal” in their family aren’t normal. For example, a longer-than-seven-day menstrual cycle is not normal. A medical professional should check that out. Hour-long nosebleeds in a month are abnormal; a medical professional should check that out.

“By changing our name, we’re embracing the diversity of our community because we’ve always been serving people with all sorts of bleeding disorders in Nevada since the chapter was founded in the 1990s,” explains Murdock.

The founder of the Nevada chapter was a registered nurse with von Willebrand disease. The chapter started by offering non-medical resources to others diagnosed with the disease.

On Saturday, Oct. 12, members and supporters of the bleeding disorders community will join to raise money for the NBDF’s Nevada chapter. All Las Vegans are invited to Floyd Lamb Park (9200 Tule Springs Road) for the annual Unite for Bleeding Disorders Walk. This annual fun walk allows participants to celebrate or honor those affected by bleeding disorders and assist in the organization’s mission to find cures for inheritable blood disorders and address and prevent complications of these disorders through research, education and advocacy.

“It’s our biggest fundraiser of the year, supporting our mission and programming efforts. All the money raised at the Unite for Bleeding Disorders Walk will assist our families, help our community and do what we can. We’ve been doing the annual community event for over 15 years,” said Murdock.

“We invite friends and family when someone is new to the bleeding disorder community and they’re dealing with a new diagnosis,” added Dupree. “This can be a very expensive disorder to have; the treatments are costly, and there’s a lot of times there are issues with getting insurance companies to cover the treatment just because it’s a chronic condition.” Many times, multiple family members are diagnosed because it runs in families, so many members get these treatments.

The Unite for Bleeding Disorders Walk is also a way for corporate teams to get coworkers together and go out for a worthy cause. Sponsorships are available, and local businesses support them by having a booth and providing a fun activity for the kids.

The NBDF’s Nevada chapter, founded in 1990, dedicates its time to finding cures for inheritable blood disorders and addressing and preventing the complications of these disorders through research, education and advocacy, enabling people and families to thrive. Donations stay here in Nevada, providing family services, youth development and emergency funds to help patients reach a productive, pain-free, independent future. More than 300 volunteers annually support more than 30 programs and events like the NVChapter Family Camp and the Unite for Bleeding Disorders Walk. For more information on NBDF’s Nevada chapter visit www.hfnv.org or connect socially at @NevadaNBDF.

Generations of Strength: A Family’s Journey

Aileen Garcia’s son has been diagnosed with von Willebrand disease, and it runs in her family with a sister diagnosed with hemophilia.

“My mom was the first to be part of the organization in the late 1990s. I was just a teenager, and my baby sister was only three. She was the first member of our family to be diagnosed. Doctors spoke to my mom about the organization where we would learn more about her bleeding disorder. After my son was born in 2007, a little shortly after his toddler years, he was also diagnosed with von Willebrand disease. My sister is now 29, and her daughter, her firstborn, has been diagnosed with hemophilia. My son, now 17, looks forward to college and lives an everyday teen life. The organization has been a great part of our daily lives for my sister, son, and family,” said Garcia.

“The organization has been a lot of help for our whole family. We have been involved in most of the events, as well as dinner classes sponsored by those in the organization to help us learn about bleeding disorders and how to advocate for our son’s health and bleeding disorders. My son has participated in their camp in Big Bear, California, where he met other children with other bleeding disorders and learned to infuse and advocate for themselves. We will participate in the walk happening in October,” she added.

“The organization [NBDF] helped us create a 504 plan for school and teach our teachers and school nurses about von Willebrand disease from elementary through high school. My son was unafraid when asked about his medical alert bracelet, which he had worn since being diagnosed. He feels comfortable and open to talking about what it represents.”

Garcia is incredibly grateful to the Las Vegas-based organization. She knows that residents in rural Nevada will have to travel but appreciates that the foundation can help many others who need resources, help and education.

“We also get one-on-one time with them. We can talk to them if they need anything, and they can help us,” adds Garcia.

The foundation educates on different topics, including bleeding disorders, teens, how their bodies are changing, how they’re growing up and what to expect.