Legends of the Cause: Gordon and Gert

Legends of the NF Cause: How Do We Honor Gordon Cummings and Gert Ginsberg?

Losing Gordon and Gert

In the past few months, NF Midwest bid a sad farewell to two remarkable people who dedicated their lives to the neurofibromatosis cause: Gordon Cummings, who passed away at 93 on February 9th, and Gert Ginsberg, who died at 95 in October. They weren’t just supporters; they were icons.

Despite the challenges of spouses and children afflicted by NF, Gordon and Gert tirelessly gave of themselves. Their contributions extended beyond financial support; they poured their time, passion, and compassion into the cause for over 40 years. Joining the NF Midwest board soon after its inception in 1981, along with their spouses, they remained steadfast in their commitment.

Gordon dedicated his time to organizing plant sales and golf outings, and often served as the board treasurer. Remarkably, even in his late 80s, Gordon willingly volunteered to serve on the board once more. Into his 90s he continued to actively participate in events such as our annual walk in Naperville. Many of us will cherish the memory and joy of spending time with him at his last walk in the summer of 2023.

Gert was also constant supporter and quiet force behind NF Midwest, demonstrating her commitment to the cause in many ways. Even after relocating to the West Coast, her passion for NF Midwest remained unwavering, as she tirelessly advocated for awareness wherever she traveled. Today, her legacy and determination are embodied by her daughter, Bev, and grandson, Eli, who uphold the family’s deep-rooted dedication within the NF community.

Gordon (center) with Dr. James Tonsgard and Gail (Cooper) Mavrogenes June 2023 at Naperville Walk4NF

Gert with Bev and Eli Oberlander

They Did So Much, With So Little

Gordon, Gert, and everyone who started this work in the 1980s, many of whom are still involved today, epitomize the get-it-done attitude of their generation. In that era, they lacked the modern conveniences we have today, like the internet, cell phones, texting, social media, and numerous NF organizations. There was very little to no specialized NF care or research. Starting from scratch is hard, and they did it with the fewest resources. They had to walk halls, pound the pavement, dial phones and talk on them, and they had to travel to regularly meet in person in the Chicago area and all over the country. Gordon, Gert, and others got the NF cause started, put it on the map, and laid the bedrock that we all stand on today.

For example, Gordon and Gert were instrumental in connecting with doctors like Dr. Listernick and Dr. Tonsgard. Their work with these physicians not only improved care for NF patients but also inspired other doctors. Additionally, in the early days of the National Neurofibromatosis Foundation (now the Children’s Tumor Foundation or CTF), Gordon and Gert’s efforts helped fund crucial research, including the discovery of the NF gene. They were involved in organizing educational events, which laid the foundation for sharing knowledge and collaboration within the NF community.

Check presentation at NF Symposium in 1995.

Marty and Gert Ginsberg, past board members.

What Will Your Legacy Be?

We are grateful to them, and we MUST be inspired by them and ALL those who created and served our NF foundations for decades. Many of them continue to serve knowing that the work is unfinished. We need you, the next generation, with your drive and passion to continue this life changing work.

In the beginning, they had so little. In the end, we have so much because of them. Imagine how much farther we will go when we use our tremendous resources and channel the energy and drive of Gordon and Gert. They gave it their all. We must honor them forever through our work. They left a legacy, what will our legacy be?