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Advice / Career Paths / Exploring Careers

My Illness Inspired Me to Launch 2 Organizations Dedicated to Helping Others

Roxanne Black-Weisheit
Roxanne Black-Weisheit

I’m a firm believer that what truly defines a person isn’t the circumstances they find themselves in, but how they face them. Roxanne Black-Weisheit—small business owner and author of Unexpected Blessings: Finding Hope and Healing in the Face of Illness— is a prime example of this.

At just 15 years old, her doctors diagnosed her with Lupus, a chronic autoimmune disease in which the body attacks its healthy cells. Shortly after, Black-Weisheit desperately sought emotional support. She wanted a friend who could truly understand her situation, and she figured there were others who needed this, too.

So, during her freshman year of college, she created Friends’ Health Connection (FHC), a nonprofit organization that offers wellness events and helps people with similar health conditions connect based on their age, illness, symptoms, tests and surgeries, hobbies, interests, and more.

As she was starting FHC, Lupus was destroying her kidney function. For two years, she self-administered dialysis five times a day and, during her senior year of college, she had her first kidney transplant (13 years later, she had her second).

Through it all, she kept moving forward with FHC. She’d even transform her hospital room into an “office” and worked from her hospital bed. After graduation, she secured enough funding to continue growing her organization, and it became her full-time job. But, unfortunately, Lupus and kidney transplants weren’t the end of Black-Weisheit’s health issues. Five years ago, at 42, she was diagnosed with lymphoma.

“With my other health issues,” she explains, “it had been about maintaining the quality of my life. This time it was about keeping my life.” Black-Weisheit’s aggressive chemo regimen left her extremely weak and tired, and she knew she had to make a choice about FHC.

“With my time and energy capped and my future uncertain, the board and I decided to close our office. I wanted to dedicate any energy I had to keeping my family life as normal as possible,” she explains.

Her career didn’t end there, though. When she started feeling better, she felt the urge to start working again. Using her event experience from FHC, she started a new company— (along with—which helps other companies schedule different types of speakers for their events. This is now Black-Weisheit’s current job. But, she missed running her own nonprofit, so she started trying to figure out how to bring back FHC.

And, recently, she received some great news: A past FHC donor provided her with a grant to get the organization running again.

Read on to learn more about Black-Weisheit’s story and how she overcame adversity (more than once).

Tell Me a Little Bit More About Friends’ Health Connection

From the start, our mission’s been to connect individuals with the same health challenges. We seek to link people whose overall situations match as closely as possible so they can truly relate to one another. And, before we decided to close our doors, we offered in-person educational (and inspirational) events featuring top leaders and experts in health and other well-known figures who’d survived illness (such as Christopher Reeve).

Now, our mission is similar, but we’re utilizing the latest technology. Instead of in-person events, we’re providing live online events (such as, “A Talk About Lyme Disease With Dr. Richard Horowitz”), which gives people everywhere access to learn from and chat with top doctors, researchers, survivors, and more. We’re also developing an online community where patients can search for other patients based on specific criteria (age, interests, tests, surgeries, etc.) and connect anonymously and confidentially.

How Do You Balance Running FHC and has grown to be pretty big, and it’s where I get my income now. Since I schedule speakers and authors for major conferences and events, there are times (specifically in the fall and spring), when I’m extremely busy with that.

As for FHC, I hired staff for it and we have a new office. I’d say that, throughout the year, I put in an average of 20 hours a week to manage it. During my less busy months (typically winter and summer), I sometimes carve out entire weeks to dedicate to FHC. I’m serving as Executive Director again, but I’m not taking any pay. I’m running it from my heart on a volunteer basis.

How’d You Keep Pushing Forward When Times Were Rough?

In college, when I was running FHC and still a full-time student, I worked around the clock. I think that’s how I coped with my own illness. I had so much to do that I didn’t have time to dwell on my physical condition.

But, there’ve definitely been times where I’ve succumbed to self-pity, but I try to limit that. My work gives me purpose for my pain. I’ve tried to focus on creating an answer to the question, “Why me?” And that answer is, “To help others.” So, that’s what I’m doing.