Anne lives in East Aurora, New York and is the organizations “boots on the ground” in the Empire State, where she engages daily with individuals, families and clinicians in the neurofibromatosis community. Anne’s background working in the human service field combined with her many years of dedicated volunteer efforts for those with neurofibromatosis has led to a position that she finds both professionally and personally satisfying.
In alignment with Neurofibromatosis Northeast’s commitment to increasing support for individuals affected by NF, Anne spends much of her time cultivating relationships with families and clinicians throughout New York. Her efforts focus on increasing visibility of the resources NF Northeast offers, such as creating patient and family support matching programs, assisting with NF related events and fundraisers, promoting advocacy efforts at the state and federal level and informing medical professionals of how NF Northeast can be a resource to their patients.
Anne’s past experience working with individuals with various disabilities, medical professionals, government agencies and disadvantaged youth brings much to the table. In the past, she was employed at the Research Foundation of the State University of New York and Maine Medical Center as an Employment Specialist. As an Employment Specialist, Anne worked with students and employees with disabilities helping them maintain gainful employment to be successful in the workplace with any necessary accommodations.
Although Anne currently resides in Western New York, she was born and raised in Rochester, New York. She attended the State University of New York College at Oswego where she earned a Bachelor of Arts Degree in both Psychology and Political Science. In her free time, Anne enjoys spending time with her husband Dan, their 3 teenage daughters, and the families 2 labradoodles Sugar and Mali (they are the laziest office “staff” in the world – but the cutest!). She loves everything outdoors – skiing, gardening, running, paddle-boarding and hiking!
“Having witnessed my nieces journey of NF2 firsthand and understanding the many struggles not only she has gone through, but her family as well, a desire has been sparked to make the world a better place for those affected by NF. Having helped coordinate the CureNF/Run4Leah event at the Buffalo Marathon for over 10 years and lobbying on Capitol Hill for continued federal funding for NF Research – I know that together we do make a difference in our fight against NF!”