Page 17 - 2020 Spring CMTA Report

BRANCH LEADER PROFILE:

Jeannie Zibrida, Atlanta

n conversation, Atlanta Branch her CMT1A in 1986. Looking
Leader Jeannie Zibrida seems back, she now realizes her CMT
more like a bright and lively was the reason she couldn’t ride a
teenager than a retiree with bicycle until the fourth grade.
ICMT who had a recent ankle Jeannie also has an aunt and a
fusion. She speaks in excited brother with CMT1A. She was a
bursts and seems to know every- participant in the Vitamin C trial,
one and everything going on in one of the first studies to investi-
the CMT community. gate a drug treatment for CMT.
Jeannie grew up on the south A member of the Atlanta
side of Chicago and is convinced Branch since its first meeting,
this makes her a “southern girl.” Jeannie took the helm in 2018.
At 15 she moved The branch currently
with her family to has an email list of
Saint Petersburg, Jeannie grew 150 people, 113
Florida, cementing up on the people on its Face- and is currently wearing a boot,
her claim to a south side of book page, and 15 to which she admits slows her down
southern heritage. Chicago and is 20 people regularly a bit. Knee replacement also may
She went to grad attend meetings. be coming soon. But despite
school at Emory convinced this At one memorable these setbacks, Jeannie remains
where she studied makes her a meeting, noted foot incredibly upbeat and positive.
nutrition and then “southern girl.” surgeon Dr. Glenn She is proud that Atlanta hosted
became a registered Pfeffer (see related a Parent/Family Conference
dietitian. Later she article p. 4) spoke recently, and she looks forward to
went into medical sales. for an hour and then spent two the branch’s next Walk 4 CMT.
When Jeannie was first hours evaluating attendees. The Jeannie and her husband,
diagnosed in 1985, technicians branch meets at Saint Martin’s Alan Segrave, live on Lake Lanier
actually stuck a needle into Episcopal Church in Atlanta and love to travel. Jeannie also
your big toe when doing an because of its central location. loves to walk and hike with her
EMG/NCS. She recalls it being Jeannie began wearing golden retriever Dash, who takes
quite painful. She wasn’t surprised orthotics in her 30s, then 12 part in all Walks 4 CMT. She is
by her diagnosis because her years ago she started wearing an passionate about helping the
father had recently been diag- AFO on one foot. She had an CMTA in finding a cure and cre-
nosed. Genetic testing confirmed ankle fusion in November 2019 ating a world without CMT. h

YOUNGEST-EVER ADVISORY BOARD MEMBER APPOINTED

van Zeltsar, 14, became the youngest-ever member of the CMTA’s Advisory
E Board in January. Evan, a student at Masconomet High School in Boxford,
Massachusetts, is a CMTA Youth Council member, four-time CMTA Camp
Footprint attendee and Boston Walk 4 CMT Ambassador. Evan, who has
CMT1A, is an enthusiastic advocate for youth, aiming to show them how
to “live with CMT rather than have CMT.” He hopes to bring the unique
perspective of the CMT youth community to the Advisory Board. In his free
time, Evan enjoys skiing, playing the clarinet and saxophone in his school
band and annoying his older brother.

SPRING 2020 THE CMTA REPORT 17