Neurofibromatosis Northeast Adds Anne Patterson as New York State Patient and Clinic Outreach Coordinator
Burlington, MA based Neurofibromatosis Northeast, the non-profit patient advocacy organization whose mission is to find a cure and treatment for neurofibromatosis (NF) by promoting scientific research, creating awareness, and providing hope and support to those who
are affected by NF, is extremely pleased to announce the addition of Anne Patterson as New York State Patient and Clinic Outreach Coordinator.
In this newly created position, Patterson a resident of East Aurora, will be based in New York state and her primary focus will be sharing information and connecting with neurofibromatosis patients, families and clinicians in New York. Patterson has been involved with Neurofibromatosis Northeast for many years at the volunteer level. She has helped coordinate the Run4Leah NF fundraiser at the Buffalo Marathon and has lobbied on Capitol Hill for continued federal funding of neurofibromatosis research.
“We are so delighted to have Anne join the organization in an official capacity,” said Karen Peluso, Executive Director of Neurofibromatosis Northeast. Anne has been a dedicated volunteer for NF Northeast for many years and her past experiences as an NF advocate have prepared her to take on this very important role.”
Neurofibromatosis is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere on or in the body at any time. While the vast majority of NF-related tumors may initially start out benign, the disorder can be debilitating and may cause disfigurement, blindness, deafness, psychological issues and cancer.
“I am incredibly excited about my new position as the New York State Patient and Clinic Outreach Coordinator for Neurofibromatosis Northeast!” said Patterson. “My passion for the neurofibromatosis (NF) community stems from having a family member with NF. Having witnessed what life is like for individuals with NF and their families, I have a good understanding of the many struggles they face.”
Patterson continues, “creating a resource network to help all those affected by NF in the Empire State will be significantly helpful. Whether sharing information in a clinic setting, meeting with individuals with NF and their families, or helping coordinate an event to spread awareness and raise research funds that will someday find a cure – it is time to get busy!”
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About Neurofibromatosis Northeast:
Neurofibromatosis Northeast is based in Burlington, Massachusetts. Their mission is to find a cure and treatment for neurofibromatosis by promoting scientific research, creating awareness, and providing hope and support to those who are affected by NF.
To learn more about neurofibromatosis, visit the NF Northeast website at www.nfincne.org or call 781-272-9936.
