“Advocating for NF has been the single greatest experience of my life”, a quote from Steven Schlussel.
We are sad to announce the recent passing of Steven Schlussel, one of the single most important people in starting the NF Research Program through the Congressionally Directed Medical Research Program. (CDMRP). Steven was a brilliant, persistent and passionate dreamer whose enthusiasm was infectious.
When working with Steven he was committed to you, his encouragement and energy made you feel like you could climb mountains. Through his passion he taught us how to educate congress and reach the dream of federal funds for NF research. Since the program’s inception nearly $300 million has been invested through the NF Research Program.
Back in the spring of 1991 Steven sat at his desk and made over 150 telephone calls to congressional offices requesting the NF commemorative resolution to pass through Congress. On October 19, 1992 President George Bush signed a Proclamation for National Neurofibromatosis Awareness Month. The original Proclamation proudly hangs on the wall of my office.
Can’t talk about Steven without talking about Robert Wilson. Robert was interested in finding a treatment and a cure for his son’s condition (NF). He has lunch with Steven and they hit it off immediately. Robert said, “Steven was so full of ideas and energy, I truly thought we could make an impact”. They headed to Washington and Steven packed their schedules full of Congressional meetings and prepared all the presentation booklets. They literally didn’t have time to stop at a vending machine to get a snack let alone use the bathroom. They agreed hiring a lobby firm could be helpful. That’s where they met a young whippersnapper, Ed Long, who had just left the hill and joined a lobby firm. Ed and his team were unbelievable. They opened doors to unlimited opportunities and gave us a presence in Washington. Ed Long and his amazing team including Katie Vanlandingham have been in this fight with us for funding to find treatments and a cure for NF for the past 20 years.
Steven and Robert saw the need to expand the grassroots base and they reached out to Karen Peluso from NF Northeast. When she and her board heard the possibility of raising significant money and they were all in. She invited me, Kim Bischoff at the NF Midwest location at the time and Kathy Price at the Texas Foundation. We have brought along others along this path who are passionate about NF research. The rest is history. Last year there were 60 NF advocates on the hill, held over 200 scheduled meetings and had 130 Congressional signatures in support of federal funding of NF research for Fiscal 2017.
Steven, as I walk the halls of congress I will forever hear an echo whispering of our happy times together laughing between meetings. You loved our country and its history you would say, “This is a great country where individuals can make a difference”.
In honor of Steven Schlussel we would like to announce the Steven Schussel Advocacy Memorial Fund. This fund will be used in Steven’s memory to educate and bring new NF Advocates to Washington DC to continue the quest that Steven has started, to fund NF Research until there is a treatment and a cure.
When that day comes I can hear Steven say “SEN SA TIONAL”!!!
Written by Kim Bischoff, Executive Director of the NF Network. June 2016