Brett Hack Vasculitis Charities: Raising Awareness of This Rare Disease

In 2012 Terry Hack’s son, Brett, had a grand mal seizure that came out of the blue. Several tests were done but there was no diagnosis. He was placed on anti-seizure medication for over a year, and 14 months after his first seizure he developed a severe headache, sinus infection and numbness in his hands and feet. Brett went to an ER where he was diagnosed with a complex migraine and sent home. A few days later, he had a second grand mal seizure and was taken to another hospital where it was determined he had a stroke that affected the right side of his body and speech; an MRI showed a mass in his brain. Other tests were done including a spinal tap and a brain biopsy, and a few days after he was admitted to the hospital in February 2014, Brett was diagnosed with central nervous system vasculitis (CNSV). He had just turned 40 at the time of his diagnosis. Sadly, he did not survive and passed away February 22, 2014. Terry believes that with an earlier diagnosis, their story likely would have had a different outcome. Several months after Brett’s death, Terry met with Brett’s rheumatologist, who was brought into Brett’s case after his diagnosis. “I needed to have a better understanding of CNSV and what happened to my son,” she said. After spending a generous amount of time with Terry explaining what vasculitis was, Brett’s doctor encouraged her to consider volunteer work with vasculitis when she was ready.

This we know to be true: Most people have never heard of vasculitis until a loved one, friend or co-worker is diagnosed with the disease. We also know that with early diagnosis and proper treatment, patients with vasculitis can lead full, productive lives. That’s why it’s so important for patients, their families and friends, care givers, and the medical community to learn as much as possible about vasculitis to help shape well-informed and educated decisions about patient care.

Brett was diagnosed with CNSV. It is among a family of rare disorders characterized by inflammation of the blood vessels, which restricts blood flow and damages vital organs and tissues. It’s a serious condition—CNSV can block the vessels that supply the brain and spinal cord, causing potentially life-threatening complications such as loss of brain function or stroke. Blood vessels can also rupture, causing internal bleeding.

In 2017, three years after Brett’s death, his mother, Terry, attended the VF’s International Vasculitis Symposium in Chicago. She was surprised to see people who really lived with vasculitis. “I was impressed with the curriculum and how much information was available to learn about vasculitis,” she said. “I was most impressed with the opportunity patients had to meet, network and form relationships. It was a perfect setting for patients to find other patients who understood each other.”

When Terry returned home, she wanted to start with a fundraiser. Several people were eager to help and in October 2017 Brett Hack Vasculitis Charities (BHVC) was born. Its board of directors consists of eight people—Terry, four family members, which include Brett’s brother and sister-in-law and two of Brett’s aunts, Brett’s best friend from high school, and two vasculitis patients BHVC. It is strictly made up of volunteers and there is no staff.

The organization’s first fundraiser was a silent auction in 2017. “We had a physician and patient speak at that event and we raised approximately $10,000,” Terry said. Since then, they have had a second silent auction and several walk/run events. There has been at least one fundraiser every year since the launch of the organization.

So, what does 2023 look like for BHVC (bhvcharities.org)? One of the goals of the Minnesota-based organization is to bring more awareness to vasculitis and expand their reach into a five-state area. “Our challenge is reaching and touching vasculitis patients,” Terry said. “We want them to know we are here to help.” Billboards have been very effective in providing patient and public awareness so BHVC would like to continue the campaign and enter a new market area. They also will be upgrading their website.

“We would like to reach out to local communities by visiting civic organizations and clubs to talk/educate people about vasculitis,” Terry said. In addition, they hope to encourage more patients to help and will have at least one dine-and-donate event. Although a little premature, plans are also in the works to reach out to the medical community. “We are finding in the smaller communities and hospitals, vasculitis is falling under the radar,” Terry explained. “Staff is not educated and in many cases hospitals are not equipped to handle vasculitis patients.” It is Terry’s hope that more awareness will help physicians, physician assistants, nurses, and interns to look further for answers and make earlier diagnoses.

The organization provides small financial services to patients who are struggling, and they try to connect patients to resources such as the VF. “Patients are grateful for the work we do,” Terry noted.

Terry currently lives in Brainerd, Minnesota, having moved from the Twin Cities area after retiring from a real estate career in 2021. She is a single mom to two sons. Her older son, Tom, and his wife, Leah, are on the board of directors. Brett is survived by his wife, Linda, who lives in Minneapolis, and their two children Jonathan and Lauren, who are college students.

Brett’s children were in middle school when he passed away and his death was devastating to his family, friends, and co-workers. They were all blindsided. “None of us had ever heard of vasculitis nor expected him to not survive,” Terry said. “He was an amazing, kind, and generous person.”