Chapter Support Group Leaders
CAROLINAS CHAPTER
Candace Morse
919-846-1423
Candace and her husband, Stan, live in Raleigh, North Carolina. Candace was diagnosed with Syringomyelia and Chiari in 1979. Thanks to an early diagnosis and successful surgery at Duke University, her symptoms remained mild and mostly stable for almost 20 years. Over the last 11 years or so, she has had an increasing amount of weakness and atrophy in her hands and arms, and developed neuropathic pain. She is also diagnosed with Meniere ’s disease and deals with occasional flare-ups of dizziness, vertigo and progressive hearing loss.
Over the past 30 years, Candace has volunteered with several non-profit organizations advocating for people with syringomyelia and Chiari. She has held various leadership positions as she and her husband dedicated themselves to helping others with SM/CM. A diagnosis of SM/CM is a life changing event. I've seen the damage that SM/CM can cause for too many people, and watched as friends have grown frailer while enduring more pain. I was blessed with 20 pain-free years, but I now have first-hand experience with the burning pain. It’s always there to remind me of the urgency of our goals,” said Candace.
In addition to her volunteer work, Candace works as a customer service representative for College Foundation, Inc., a non‑profit agency that provides information about college financial aid. Her husband, Stan, is self-employed as a recruiter for the graphics arts industry. Their three cats and dog happily share their home with Stan and Candace.
Lisa Mathis
864-266-8837
CLEVELAND CHAPTER
Cathy Poznik
330-425-8476
Cathy lives in Twinsburg, Ohio with her husband Jim and three boys, Calvin, Brent & Travis. Calvin has Chiari malformation, syringomyelia, and high intra-cranial pressure and Brent has Chiari malformation.
Cathy formerly served on the Board of the American Syringomyelia Alliance Project as Chair of the Community Foundations program and will now continue her work in development for CSF. She is focused on spreading awareness and one month after CSF was founded, hosted the First Annual Cleveland CSF Community Foundation event.
Cathy’s goal in working with CSF is to continue her work in Community Awareness programs, raise much needed funds for research, and work with a medical research board that has committed itself to the CM/SM cause. Her passion is to work with CSF’s dedicated Board of Directors, staff, and medical doctors to help find a cure.
GREATER METROPOLITAN WASHINGTON AREA CHAPTER
Susan Mills
202-341-4131
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.”
Brittney Renehan
240-723-6515
Brittney O'Toole Renehan is a 23 year old Baltimore resident. She graduated from the University of Maryland with her Bachelor of Science in Family Science and is currently studying at the University of Maryland, Baltimore where she will earn her Masters in Social Work. Brittney has been a patient of Dr. Fraser Henderson's for many years. She was diagnosed with Chiari malformation in 2005. As a result of her sincere passion to help others, Brittney was invited to collaborate with other professionals in establishing the Greater Metropolitan Washington Area Chapter of CSF. As Director of Social Services, she provides education and encouragement to many members of the Washington Chapter. She meets monthly with members to discuss coping mechanisms, challenges faced, ways to increase awareness and reaches out to others who have been diagnosed.
NORTHWEST REGIONAL CHAPTER
Sheena LaShomb
253-278-7378
Sheena lives in Tacoma, Washington with her husband Nick, where she is an auditor for PricewaterhouseCoopers. She graduated from State University of New York with an accounting degree and is a certified public accountant in New York and Washington. She has worked in a variety of industries including non-for-profit and financial services; starting her career in Syracuse, NY and moving to the Seattle area in the Fall of 2007.
In 1994, Sheena was diagnosed with Syringomyelia and then in 2005, she was diagnosed with tethered spinal cord, Chiari malformation and Ehlers-Danlos Syndrome. She underwent a spinal cord detethering, brain decompression and two cranio-cervical fusions within an 18 month period.
Sheena recognizes first hand the difficult road to diagnosis and treatment and wants to help build awareness of Chiari and Syringomyelia in hopes of making the road to diagnosis and treatment easier for others.
UTICA, NEW YORK CHAPTER
Mary Ellen Feisthamel
315-793-8823
Mary Ellen lives in Frankfort, New York with her husband, Jim, and 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.”
