Advocating for NF research — 30 years and counting

Author: NF Northeast
Published On: 01/29/2018

Karen Peluso became involved with the NF community when her daughter Mia underwent surgery to remove a very large and destructive plexiform tumor in her abdomen caused by NF1. The tumor involved multiple organs and following extensive surgery to remove and repair some of those organs, Mia’s condition was grave and she was on life support. Thanks to her amazing team at Massachusetts General Hospital, Mia slowly recovered.

During this time, Karen and her husband, Bert, were shocked by how devastating NF can be and the lack of available information about NF. Most of all, they were concerned that very little scientific research was being conducted about NF.

Mia's school and the family's community rallied to show their support. Caring friends who wanted to help started to plan events, and before they knew it Karen and Bert were fundraisers! Despite a lack of prior experience or formal training, they were propelled forward by the energy of their friends and family and their love for their daughter.  

In the beginning, their base of operations was their kitchen table, but eventually — with the help of generous business associates — they set up an office. After working for many years as a volunteer planning events such as golf tournaments, pizza parties, road races, and dine-arounds, Karen was hired by the NF Northeast Board of Directors to be the part-time executive director.

Raising funds for NF was (and still is) very challenging, and eventually the organization scraped together enough funds to provide seed grants to a handfull of scientists who were interested in unraveling the mysteries of NF. The researchers used the seed funding to gather data so they could apply to the National Institutes of Health for larger grants. At that time, the NIH was the only source of government funding for research.

One of the most defining moments in Karen's efforts to promote research came in early 1996 when she received a call from an exuberant and persuasive man named Steve Schlussel from New York. Steve told her about a small NF research program that had been established within the U.S. Army’s Medical and Research and Material Command in 1993. By 1996, the program was being formalized and the Congressionally Directed Medical Research Program (CDMRP) was established. Steve’s message was urgent. He said “we need to act now!” Steve and an NF dad named Robert Wilson had already done much of the ground work and identified a lobby firm to work with, but they needed financial help, and most of all they needed NF advocates from around the country to step up and raise their voices.

Karen invited Steve and Robert to attend a Board of Directors meeting where they presented this opportunity to promote millions of dollars for NF research, and the board enthusiastically said “we’re in!”

The next day Karen reached out to other NF groups around the country to invite them to join in this exciting effort. They too were all in!

That year a handful of advocates from NF Northeast, NF Midwest, and the Texas NF Foundation made their first trip to Capitol Hill to advocate for NF. Steve was their fearless leader, teaching them everything they needed to know about persuading members of Congress to support NF, and the group pooled their funds to engage Ed Long to be their lobbyist in DC. That was the beginning of the NF Network Advocacy Program, and today — 21 years later — as a result of their passion and relentless commitment to keep NF research thriving within the CDMRP, more than $317 million has been appropriated to the NF program.

Now in its 30th year, NF Northeast continues to provide grants to research scientists and has awarded over $3 million in grants since its inception. They raise 70 percent of their revenue through special events.

“Events are important because they serve many purposes besides raising funds," Karen said. "They increase awareness of NF, and they also give members of our community an opportunity to meet others who are living with NF. Through our events we have built a very strong support network and everyone is united by our common goal – to cure neurofibromatosis!”

Karen Peluso is the executive director of Neurofibromatosis Northeast and has been raising funds and advocating for NF research since 1982.

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