Eric Burnstein loved the outdoors when he was growing up in the East Bay. He played baseball in the park with his father and friends and went on lots of hikes.
Shortly after graduating from Acalanes High School in Lafayette in 2016, he developed severe nerve pain, possibly caused by a tick bite. The local doctors he saw could not give him a definitive diagnosis or treatment plan. A few dismissed his pain as psychosomatic.
For five years, as he bounced around the health care system, he sought answers about his condition by reading medical journals and researching clinical trials to treat Lyme disease, for which he had tested positive. He also connected with other young people with chronic illnesses, sometimes leading online support groups.
Despite his physical pain and fatigue, he was able to earn his associate’s degree in web design from Diablo Valley College. He then went to work at a health-focused virtual reality company as a researcher. But he eventually lost hope that his condition would improve. He died on April 10, 2021 at age 23.
“Eric used to say, ‘I wish I had cancer instead because then at least I would be getting the understanding, the empathy, the attention and maybe the kindness’” from doctors, Eric’s father, Marc Burnstein, said in a joint phone interview with Eric’s mother, Michelle Burnstein.
They spoke with J. on Dec. 3, which would have been Eric’s 26th birthday, before going to visit his gravesite. They said at the beginning of the interview that they preferred to discuss his life rather than his death.
To honor their son, who celebrated his bar mitzvah at Temple Isaiah in Lafayette, the couple launched the Eric Burnstein Foundation Fund in 2021. The fund, which is based at the East Bay Community Foundation, provides grants to nonprofits that support people with chronic illnesses and “invisible disabilities.”
“There’s a lot of organizations out there that are trying to make inroads into this, but it’s hard to vet them out,” Marc said. “What our foundation does is it really takes the time to dig in, do the legwork, so that whatever somebody donates to our foundation, they can be assured that the money is going to not only short-term immediate goals for relief of people that are suffering, but for mid- and long-term goals.”
The fund has disbursed grants totaling around $140,000 to a handful of organizations to date, including the Starlight Children’s Foundation, which provides video games and toys to children in hospitals to help ease their pain and boredom; KultureCity, a nonprofit that makes event spaces accessible to people who experience sensory overload, such as those with autism or PTSD; and the Special Olympics, which has an “inclusive health” initiative to help people with disabilities to access health and wellness programs.
The largest grant has gone to the Patient Revolution, an organization that promotes a more compassionate, patient-centered approach to health care. Founded in 2016 by Dr. Victor Montori of the Mayo Clinic, the nonprofit seeks to transform the current fragmented health care system into one that is “focused on the biology and biography of each person” and not on the “business of health care,” according to the organization’s website.
“It’s going to be a lot of work to move the needle when it comes to really changing our institutionalized health care,” Marc said. Patient Revolution “is working to change that system for the benefit of clinicians, health care providers and patients because we’re all in it together.”
The Eric Burnstein Foundation Fund’s advisers include Eric’s 32-year-old sister, Danielle, who works at Penumbra, a medical device company in Alameda. Tom Williams, the former West Coast manager for health insurance giant Aetna, serves on the fund’s advisory board.
Marc, a vice president for sales and marketing at Davidon Homes (founded by the late Donald Chaiken), and Michelle, a real estate agent, said they intend to shift the fund into its own 501(c)3 at some point. In the meantime, Marc plans to start giving public talks organized by the Patient Revolution about Eric’s experience.
“He would say, ‘Tell my story’ and ‘Tell how I was treated as somebody with a chronic, mysterious illness,’” Michelle said. “He was young, and he did have a hard time advocating for himself.”
Marc added, “Most people did not know what Eric was going through, other than our immediate family and a couple of close friends. He did not talk about his illness. It wasn’t like he was looking for sympathy. He just wanted to be well.”
According to his parents, Eric was a huge fan of the San Francisco Giants, with a witty sense of humor and a refined palette. Most importantly, they said, he was sensitive to the suffering of others and always rooted for the underdog.
After Eric died, Marc channeled some of his grief into music. In a song he recorded and shared with J. titled “Before I Go,” Marc sings from his son’s perspective: “No one knows, they tell you it’s all in your mind / There’s no cure, so why can’t they at least be kind / Tell me what I’ve done to be cast away without a word / Time for my story to be heard.”