| ABOUT US eNEWSLETTER EVENTS CHAPTERS/CO-OPS CONTACT US |
 |
 |
 |
 |
|
Volunteer LeadershipCSF unite@night Chairpersons Although the CSF unite@night walks are still largely in their infancy, they have grown from small gatherings of a few dedicated fundraisers into large events filled with thousands of people. The reason for such a spike in the participation in unite@night must be tied directly to the tireless efforts of the unite@night Chairpersons. These men and women, many with large families, full time jobs and countless other projects, take valuable time out of their busy schedules in order to help plan their walks, recruit walkers/donors, and altogether run their event. It is thanks to these hardworking men and women that people who may have never heard of Chiari malformation, syringomyelia or any of the related disorders are able to attend these events and play an active role in spreading awareness. In many cases, these people become just as energized towards the cause as the Chairpersons, themselves. We at CSF truly appreciate all the Chairpersons and volunteers do in order to make unite@night one of our most special events we have the honor of sponsoring. Alicia Leah Pam Fenner Kristina Medows Christy Schmidt Susan Mills
"I feel like being there for someone to talk to who is going through this is very important. Some people are blessed with only having to have one decompression and some have 10 or more. If there is any way that I can help stop that and the pain they live with everyday, then I want to do it." Contact Susan Mills. Aaron Fabbri
Aaron received a Master's degree in Computer and Information Science at the University of Oregon, where he also taught classes and worked on research for the next generation Internet. Aaron believes that syringomyelia and Chiari malformation are under-represented diseases that cause too much suffering, afflicting children and adults in the prime of their lives. "I am not happy with the status-quo on these disorders. Too little is known about them. We need to raise awareness, to increase quality research, and eventually cure these diseases." Contact Aaron Fabbri. James and Mary Ellen Feisthamel
In 2005, their only child, Megan, was diagnosed with Chiari malformation. Megan has undergone two decompression brain surgeries with minimal relief. Jim and Mary Ellen have vowed to raise as much awareness and money as possible. Since 2005, they have been hosting one major event which includes a chicken BBQ and motorcycle "Ride for a Cure". In 2009, they will be hosting their first Valentine's Day Gala in Utica, New York, and will continue to do this until a cure is found. "We love our daughter Megan and would do anything for her. The one thing we cannot do is stop her pain. No one should suffer in pain every day. We need to find a cure so that someday every child and adult can live a happy, healthy, productive life. This is our goal. If you would like to speak with us to talk or for assistance, please call us at 315-793-8823." Contact Jim and Mary Ellen Feisthamel. Revised 03/2009 |
Susan Mills has spent her whole career in the field of health care. Susan is currently employed by Doctors Community Hospital and helps Dr. Fraser Henderson with continuity of his patients' care. She also assists Dr. Henderson with the establishment of an organization of medical experts in their geographical region. A main goal will be to provide a center of excellence to care for the range of needs of Chiari patients as well as those with other complicated neurogenic disorders. Finally, she will provide liaison between CSF and its Greater Washington Metropolitan Chapter (including Doctors Community Hospital, patients and providers of their care).
Aaron lives in Portland, Oregon, where he develops networking software for Cisco Systems. Aaron lends his computer science background to help CSF use technology to accomplish their goals.
Jim and Mary Ellen live in Frankfort, New York. Jim works for the State of New York and owns an Electrical Contracting business. Mary Ellen works for Cooperative Magnetic Imaging, a company that performs MRI's.