Karen Asbury serves on the Angioma Alliance board of directors as Treasurer.
Karen has had a long career in accounting; currently she is a Manager in Information
Technology supporting centralized financial and human resource systems. Karen and
her husband Mitch were married in San Diego in 1980. Mitch experienced his first
seizure in 1978 while in boot camp; this prompted his discharge from the Air Force.
He was told his epilepsy was probably caused by a childhood fall and was not genetic.
Mitch was later diagnosed with multiple cavernous angiomas. Mitch has undergone two
surgeries; a left temporal lobectomy in 1994, and a craniotomy in the right occipital
junction in 2004. The family migrated to Chesapeake, Virginia after Mitch’s first surgery
to be closer to Karen’s large family. They have three children and a two-year-old
granddaughter.
Their middle-child, Callie (age 22), has since been diagnosed with multiple angiomas
through MRI. Callie and Mitch have received confirmation that they are affected by a
change in the CCM3 gene. Mitch’s 77 year-old father has been recently diagnosed with
multiple angiomas; thankfully he remains non-symptomatic.
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Ken Ruggles serves on the Angioma Alliance Board of Directors as Chair. Ken is the
husband of Allison and father of three beautiful teenage girls. He became involved
with cavernous angioma in 2005 when Allison was diagnosed with a cavernous angioma
in the pons area of the brainstem. Ken has a background in business consulting and
currently conducts business research with Fortune 500 companies. Ken has joined the
Angioma Alliance Board to help further the core goals of increasing funding, research,
and awareness. He wishes to see Angioma Alliance continue to grow as a source of
information and support for those affected by cavernous angiomas.
Connie Lee serves Angioma Alliance as President.
Angioma Alliance was founded in 2002 by Connie Lee, a
clinical psychologist and the mother of a daughter with
multiple cavernous angiomas. Connie’s personal story with
cavernous angioma began in January, 2000. At that time,
Connie’s 4-month-old daughter Julia received brain surgery
for a major hemorrhage and hydrocephalus caused by a
cavernous angioma. It was not known that she had the
condition, and by the time Julia was taken to the operating
room she was near death. Her neurosurgeon performed a
craniectomy, stopped the bleeding and removed the angioma.
Since then, Julia has had more cavernous angioma
hemorrhages, three of which required surgery. Today, Julia
is a bright, outgoing, active six-year-old who loves to swim
and ride horses. Although she had the hereditary form, Julia
is the first in her family to have the illness. Of those
with cavernous angioma, 25% are diagnosed as children.
Norma Villa serves the Angioma Alliance Board of Directors as Secretary. Norma is
first-generation American-born, of Mexican immigrants. In 1992, her daughter was
diagnosed with multiple cavernous angiomas--the largest and most threatening being
in the pons of the brainstem. In 1994, her daughter underwent surgery resulting in
partial removal of the angioma. A second brainstem surgery was performed in August
2006. Norma's educational background is in social work/human relations. She has
joined the board of Angioma Alliance to help with outreach projects, especially
those extending to the Latino/Hispanic population.
Kristen was diagnosed with multiple cavernous angiomas in
March, 2002 and has undergone brain surgery to remove one
angioma. Kristen has a number of affected family members,
is the mother of Anda, and holds a Masters degree in Special
Education. She is dedicated to helping children who carry
the diagnosis. Kristen will be helping Angioma Alliance to
shape our outreach and support programs. Her experience and
sensitivity are essential ingredients for making sure that
we truly are addressing the needs of those affected by
cavernous angioma.
Amy was diagnosed with a cavernous angioma of the basal
ganglia in 2002. Her primary symptom was debilitating
headaches. After several doctors’ visits and a few opinions,
she was diagnosed. At this point, she is believed to have
the sporadic form of the illness. She had surgery to remove
her CA on 6/11/02, just 6 weeks before her wedding. Amy has
made a complete recovery since the operation. She works
full-time as a Sales Analyst and is working toward a
Master’s in Business Administration. Amy will be helping
Angioma Alliance with surgery support, public awareness, and
event planning. Amy was instrumental in organizing the first
Angioma Alliance Family Conference.