Leaving a Legacy Matters
When Scott Gongaware was diagnosed with Vasculitis more than 20 years ago after a year of being sick and with kidney failure, he and his wife thought it might be a death sentence. Few people offered hope back then and not much was known about the rare autoimmune disease.
He not only survived, he thrived, thanks in part to the people who surrounded him with the support he needed. In return he and his wife Patty have made the Vasculitis Foundation an important part of their estate planning and are talking about that decision during Make-A-Will Month.
When Gongaware was diagnosed, he and his wife reached out to Dr. Anthony Fauci at the National Institutes of Health. Fauci put them in touch with Dr. Carol Langford at the Cleveland Clinic, who explained there is no cure for the disease, but offered valuable advice for treatment. She also put them in touch with the Vasculitis Foundation.
Joyce Kullman, executive director of the foundation, was the first person to reach out and offer the couple hope.
“She boosted my morale and I thought that maybe I can live, maybe I have a chance,” Gongaware said.
The treatments were intense and he almost didn’t make it. Immunosuppressants left him with a severe case of pneumonia, shingles and several other infections. He lost part of his lungs to Pneumocystis pneumonia and one eye to the shingles. He lived in the hospital for six months. All the while his wife Patty wrote a blog about his treatment and eventual recovery to help keep friends and family updated about her husband’s prognosis. By the time he was in recovery it was the length of a book.
Patty also quit her job to be with her husband every day in the hospital. “Our lives were in shambles,” Gongaware said.
“After two years of rehab I got quite a bit better,” Gongaware said. “Patty is younger than me, and about a year into recovering from Vasculitis we thought about having kids.” But the Cytoxan used to treat his vasculitis had left him sterile.
He got better and went back to work for 15 years. He sailed along the first 10 years and then the vasculitis flared a number of times before doctors told him he should quit his high-stress job. He was just 59. “I miss my job every day,” he said.
Gongaware, who grew up far from being well off, had been a saver his entire life. He put away money for the future. And a couple of years ago, he and his wife decided to hire an attorney to help with their estate planning.
While they plan to leave an inheritance to their siblings, because the pair have no children, Gongaware said they decided to take “a chunk” of what they have saved and give it to the Vasculitis Foundation. They also plan to leave legacy donations to other charitable causes.
The Gongawares said they have made smaller donations over the years, but consider the Vasculitis Foundation essential to patients and caregivers and a part of their family. That’s why they want to leave a lasting legacy to support early diagnosis, research, education and the support groups that were so vital to Gongaware’s recovery.
“We were so scared, upset and devastated and this is the only group I could talk with and they would give us a morale boost. Not just us, but also my folks.” His parents have since died, but he said the Vasculitis Foundation offered them education and resources that gave them hope for his future.
“I have been to a lot of vasculitis conferences,” he said. “Some of my favorite doctors are on the board. The foundation helped our spirits and took us by the hand and helped us from day one. It is our favorite foundation.”
He tries to give back in any way he can. He is a member of the Vasculitis Patient-Powered Research Network (VPPRN) and has signed up for various studies. He makes himself available to others who have been diagnosed with vasculitis.
“It’s like a family,” he said. “There are lots of stories between 2003 and today that have impacted our lives in so many ways – from being scared to death, at the beginning to feeling like we’re the most blessed people in the world because our love for one another is stronger than ever and I am alive.”
August is National Make-A-Will month. Creating a will is crucial to ensuring your wishes are honored after passing. It allows you to clearly outline the distribution of your assets and make specific bequests to family, friends, and causes you care about deeply. By including a legacy gift to Vasculitis Foundation, you can help sustain the VF’s mission to support vasculitis patients long into the future. This thoughtful act of giving can create a lasting legacy, making a meaningful difference even after one’s lifetime. If you would like to take advantage of Free Will’s free platform to create your own will, please visit the VF’s FreeWill website