It is with deep sadness that we share the passing of our dear friend and longtime volunteer, Bob Gross.
For many years, Bob was a dedicated FSR Patient Navigator, always offering his time to ensure those newly diagnosed with sarcoidosis or diagnosed with a new manifestation had someone to connect with and receive much needed support. As a retired vocational counselor Bob was skilled at helping patients find the resources they need to navigate their journey. His kindness, steady presence, and unwavering commitment touched countless lives. Bob was also a strong advocate; meeting with elected officials to increase funding for research and raise awareness about the unique needs of individuals living with rare diseases.
Mary McGowan, President and CEO of FSR, shared, “Bob embodied the very best of what it means to serve others. His generosity, warmth, and dedication made a profound difference in our community. We are deeply grateful for the many years he shared with us, and we will honor his memory by continuing the important work he believed in so deeply.”
Bob’s wife, Ava, shared with us that FSR was an important part of his life. Bob will be remembered not only for his service, but for the warmth and friendship he brought to every interaction. His legacy lives on in the lives he touched and the community he helped strengthen.
We invite our community to share personal stories and reflections about Bob. These memories will be gathered as a tribute to his legacy. Here are a few that were shared:
“I first met Bob at FSR’s Patient Advocacy Training in Washington, D.C., in February 2019. He was the very first person to approach me and introduce himself—a true godsend for a newcomer finding her way. Bob exemplified selfless dedication and unwavering loyalty to sarcoidosis patients and fellow advocates. He stayed in touch over the years, often sending me materials related to sarcoidosis, always reminding me of his commitment to this community. He was a leader we could all look up to, and his impact will be felt for years to come. Bob, you will be deeply missed—but we’ll carry your work forward from here.” – Brandi C.
“So very sorry to hear about Bobs passing. He was one of the first FSR Patient Advocates I met when I went to my first conference. Such a nice kind man.” – Diane W.
“Bob was such a sweet person. I first met him at FSR training, and he immediately complimented my purple hair. That was Bob — kind, genuine, and always smiling. He was so happy to be surrounded by his fellow FSR advocates.
The last time I saw Bob was in 2023, when Kerry, Cathleen, and I hosted a sarcoidosis brunch, he joined us. We caught up on life, shared laughs, and he enjoyed reconnecting with old friends while meeting new ones in the sarcoidosis community.
Bob and I stayed in touch through Messenger. He often asked about our next brunch and promised to plan a trip to New York for it, though life got in the way and it never happened. In July 2023, he and his wife came to New York and wanted to meet for dinner with Kerry, Cathleen, and me, but I was away. Still, he always kept me updated on his condition, and I reminded him often how strong he was and that he was in my prayers. He would always say, “Great being Sarc friends with you.”
The last time I spoke to Bob was June 27, 2024, at 9:30 pm. He had posted a picture on his Facebook story, and I messaged him, “Enjoy.” He replied, “Having a good time,” and I said, “You deserve it, my friend.” I didn’t know that would be the last time we’d talk.
Bob touched many lives, including mine. He will truly be missed. May he rest in peace. 💜” – Cheryl B.
Our thoughts are with Ava and their family during this time. May we honor Bob by carrying forward the spirit of generosity, dedication, and care that he embodied so beautifully.
Please feel free to send your memories and reflections to info@stopsarcoidosis.org
If you would like to donate to FSR in Bob’s honor: Bob Gross Memorial Page