Volunteer Leadership
Debbie Culver
"Conquer for Kaya" Golf Tournament Coordinator
Debbie lives in Boerne, TX, where she runs Diamond C Stables & Ranch LLC. She uses her past experience in the golf business to help raise money for research for Chiari & syringomyelia.
Debbie feels there is so much to learn about both disorders and that holding an annual golf tournament will help raise money to fund the research. Until her granddaughter was diagnosed with these disorders, Debbie had never heard of them and now she knows two or three people with them.
“I also 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 Debbie Culver.
Aaron Fabbri
IT Consulant
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.
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
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.”
Contact Jim and Mary Ellen Feisthamel.
