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 Heather Allen Tammy Bailey Kori Brzozowy Meredith Burns Tracy Butenhoff Amy Carper Kyle Citro Shirley Cleaver Denise Cobo-Yost Deidra Collins Jessica Covey Melinda Crown Annie Davis Kim DeAngelo
Pam Fenner Mariochi Fernandez Gina Ferraro Miranda Fort Gwen Friedrich Celina Holmes-Smith Lori Huckaby Janet Hussey Martha Hutcheson Tonya Jones Sherri Ketchesin Megan Ludeman Berta Mastin Nique Mayo Megan McDonald
Kristina Medows Jessica Montana-Morse Kelly Mullarkey Brian Murphy Nancy Ortega Tracey Owens Michelle Piazza Dawn Pushman Marcia Reese Donna Renfro Renee Rogers Jessica Romero Alyson Salzedo-Benison Joy Sanders Kenneth Sanders
Christy Schmidt Lori Shanks Sydney Shanks Amy Smith Sabrina Stabile Ginger Stilson Katrina Swinehart Barbara Vallardes Christina Vogel Mika Watson Kelly Whitehead Kacey Wood Kelly Worsencroft
Other Key Leaders:
Susan Mills Greater Metropolitan Washington Area Chapter Coordinator
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).
"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."
James and Mary Ellen Feisthamel Fundraising Coordinators
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.
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."