Board

Terri Rausch - President - terrirausch@yahoo.com

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. 

Shane Forfar - Vice President - hello@nfmich.org

Rosemary Anderson - Treasurer - rosemary@nfmich.org

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 - kristin@nfmich.org

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.

Shelley Volkert - shelley@nfmich.org

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.

Stacey Goodwin Stacey@nfmich.org

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! 

Margaret Crummel - hello@nfmich.org

I became involved with NF Michigan 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. Faith 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.  

Tricia Ratell - hello@nfmich.org

Dorothy Pope

I am a person living with NF1. I am a special education teacher with 26 years of experience and enjoy working with people. I joined the board to help spread knowledge and awareness of NF and to help others with this condition. I also want to help their families build a support group for them.

Hilary Berens

I am so proud to join the NF Michigan Board. I am a huge advocate for the NF community because my son Crew was born with NF by spontaneous mutation. Our son has experienced so much including tumors growing affecting his speech, swallowing, hearing and some challenging side effects from chemotherapy medication. By sharing his story I have been able to connect with other families and provide support to others during their journey. Raising awareness, research funds and advocating for a supportive community is important to me and our family.