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Scott Volkert - President - minfscott@gmail.com

Our journey with NF1 in began 1996 and we quickly tried to wrap our heads around this strange sounding disorder.  While education is important, it also can lead to unneeded stress or worry.  Try to avoid dwelling on the “what if’s” and address things as they arise. We have made huge advances in the care and expertise for NF in Michigan and beyond. Our goal as a board is to provide support, awareness and fundraising for research, grants and care for the NF Community.

 

Shelley Volkert - Vice President - minfshelley@gmail.com

Our son was diagnosed with NF1 in 1996, before good access to the internet. We were frightened and confused by the amount of bad information regarding this disorder. I joined the NF support group shortly thereafter in order to educate myself and our family. I have served on the NF Michigan board ever since in various roles. 

My passion lies in serving our NF community and raising awareness.

 
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Rosemary Anderson - Treasurer - minfrosemary@gmail.com

I began attending local NF support group meetings in 1985, when the group was first organized here in Grand Rapids.  My 3-year-old son, Aaron, had been diagnosed with NF1 six months earlier.  I served as co-chair and then group president from the mid-80’s until 2016, when I became treasurer.  In 2001 I joined the board of the NF Network (then NF, Inc.) and currently serve as vice-president of that national organization.  My passion is patient support - helping those affected to understand and live with NF and to find the best medical care.

 

Kristin Bradley - Secretary - minfkristin@gmail.com

My involvement with NF began when our oldest daughter was being diagnosed with this condition as an infant.  As a way to find some sense of order during all the uncertainty, I immersed myself in learning about neurofibromatosis and spreading awareness.  I have served on the board of NF Michigan since 2000 in various roles.

 
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Terri Rausch

I was diagnosed with NF2 when I had already reached the young age of 40.  I am very lucky that I am only deaf on one side and my balance so far is fairly stable.  Only one of my two sons have NF2 and his tumors are tiny and behaving themselves. I have been involved with NF Michigan since 2008 as a fundraiser and recently I joined the NF Michigan board.  I am pleased to help out in any way I can.

 
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Bob Jones

I'm the old guy in the back!  My family and I do as much as we can to help with fundraising, support and promoting awareness of NF. My wife and son both have NF1.

 
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Tammy Bingley

My son's diagnosis drove me to get involved with the NF Michigan board in 2016. Shaun is 8 years old and the fear and need for education pushed me to pursue the facts and spread awareness. During Shaun's diagnosis, it was found that I also have a mild form of NF. We will never let it slow us down. Educating others and supporting those with this diagnosis is our passion.

 
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Stacy Goodwin

Neurofibromatosis was something I had never heard before when our daughter was first diagnosed in 2014.  When I found out just how common it is, I couldn't believe how few people that we knew had ever heard of it.  It quickly became my mission to help spread awareness and raise funds towards research.  I joined the NF board in 2016 and am thankful to be involved with such a dedicated group of individuals! 

 
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Margaret Crummel

I became involved in the NF Support Group when I was seeking information and support. As one of eight children, five of whom also were born with NF, I wanted to become more involved with others who were on a similar journey. My faith has guided me and provided the insight and grace needed to face each challenge that NF brings. My hope is that neurofibromatosis awareness will bring wisdom and understanding to the public, health care providers and legislators to fund research that will find viable treatment.