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Neurofibromatosis Midwest




Diana Haberkamp, Executive Director
Diana has two children and a husband with Neurofibromatosis Type 1 and has been involved with the organization since 1997. She became our new executive director in 2008. Diana has a background in real estate. marketing, information technology and more. Between her now adult children and her husband, she has dealt with many of the complications of NF1. She has a real dedication to the cause and to the families and individuals dealing with neurofibromatosis and a determination to the bring a brighter future to her family and others.



Jenny Perkins Development Director
Jenny has a nephew with NF1. She was involved with our Great Steps walk in Naperville since the beginning and ran her own business. Jenny joined us in December of 2011 and oversees our various fundraising/awareness raising efforts. She has a real passion and joy for the work and looks forward to hearing from other people who are eager to make a difference in the neurofibromatosis cause.



Liz Campana, Administrative Assistant
Liz is a Mom of a daughter who has NF1. She joined the office in 2012 but has been involved with NF Midwest since 1998, serving as a past Board Member, volunteer and fundraiser.  With a strong bookkeeping and administrative background she keeps things humming along. More importantly, Liz has a heart for the NF cause and is committed to the fight of finding a cure in her daughters’ lifetime.  She cares, and is here to help when you call.




Board of Directors

Dennis Pilkinton, President
Dennis is COO at Crown Corr, Inc. He has one grown child with neurofibromatosis. He and his wife, Joan, were instrumental in starting the Great Steps for NF walks in 2000, of which now there are many throughout the U.S.

Steve Griest, Vice President
Steve is the GM at Harmon, Inc. He has a friend who has a child with NF. In 2010 Steve founded the Chip In Fore NF Golf  Benefit held yearly at Cog Hill.

Jean Nolan, Secretary
Jean is an agent at Nolan Agency, Inc. She has a child with NF.

John O’Donnell, Treasurer
John is the Vice-President of Risk Management  for Enterprise Rent-A-Car. His wife, Susan, and daughter, Grace, both have NF1. As a way to get proactively involved with NF Midwest, the O’Donnell family created “Team Doodle” and has been actively raising funds for the Great Steps Walk in Naperville since 2008.

Patrick Cullen, Director
Patrick joined the board in 2012 shortly after his son was diagnosed with NF1. He and his wife, Jaime, are eager to help raise awareness and funds in the Milwaukee area. After working in the Culinary field for 25 years, he is now studying Information Technologies.

Gail Mavrogenes, Director
Gail is a founding member of NF Midwest. She also helped establish the National Neurofibromatosis Foundation which is now known as the Children’s Tumor Foundation. She is also a long-time business owner.