Page 25 - 2020 Summer CMTA Report

CMTA attendance. Laurel Richardson gave atten- hopes to keep growing and adding members
dees an insight into the CMTA’s STAR
from all over Oklahoma.
h
research program, history and community
BRANCH programs. She also talked about the impor- BUCKS COUNTY, PA
tance of being seen at a Center of Excellence,
Eleven members welcomed CMTA Advisory
Board Member David Misener to the Bucks
like the clinic at the University of Minnesota
led by neurologist Dr. David Walk. Laurel
County Branch’s Zoom meeting May 16.
NEWS also talked about the CMTA’s Patients as David is a board-certified prosthetist and
orthotist who has practiced in Albany, New
Partners in Research initiative, a critical way
for patients to get involved in the research
York, for more than 20 years. Both he and
process.
h his son have CMT 1B, so he truly under-
stands the unique challenges faced by others
SYRACUSE, NY who have the disease. David shared various
LOS ANGELES The seven people who attended the Syracuse options for orthotics and bracing to assist
A dozen people welcomed guest Branch’s first meeting on Zoom were pleas- with challenges such as poor alignment, foot
speakers Alison Sterite, DPT, and personal antly surprised at how easy it was. They drop, ankle instability and propulsion.
trainer Tara Lyn Emerson to the Los Angeles discussed the importance of staying positive, David’s wealth of knowledge, along with his
Branch’s virtual meeting on May 30. Sterite walking aids and footwear. During the personal and professional experiences, left
presented on different types of physical ther- footwear discussion, a former mail carrier members feeling understood and optimistic
apy, the goals behind each and how to gave his suggestions for what brand to wear about finding solutions to improve their sta-
differentiate between normal soreness from and where to shop for them. Members also bility and mobility. Given concerns regarding
exercise and pain caused by overdoing it. discussed the importance of maintaining a COVID-19, the members agreed to postpone
She shared some stretches that are generally positive outlook through the pandemic, their annual Buffet Dinner & Raffle
helpful for CMT patients. Emerson talked which is made easier by knowing “We are fundraiser, but they will hold an outdoor
about her own CMT journey and how she not alone.” potluck picnic this summer.
focuses on exercises she is able to do. h h
Branch member Julie Lightner shared her CLEVELAND, OH CHESTER COUNTY PA
experiences volunteering with the annual Several members of the Cleveland Branch Sixteen people gathered via Zoom for the
Angel City Games, which include adaptive attended their first virtual meeting May 21. Chester County Branch meeting on May 3.
sports workshops. The 2020 Angel City Guest speaker Laurel Richardson shared Guest speaker Bernadette Scarduzio shared
Games will be virtual and branch members information about the STAR research pro- her CMT journey and some of the work she’s
are invited to sign up—it’s free! Lastly, gram, education and events in the community, done as a CMT advocate, including a docu-
branch member Lexi Dineen announced that and also provided detailed resources about mentary about her life with CMT that is free
she has started a blog about her journey with how community members can get involved on Amazon Prime. She talked about her work
CMT at theabilityblog.com/. and communicate with the CMTA. making New Jersey beaches accessible with
h h mats that go over the dune to the shoreline.
CENTRAL FLORIDA TULSA, OK She shared her quarantine exercise routine
Five members of the Central Florida Branch The first Tulsa Branch Zoom meeting went and gave tips about getting insurance to pay
welcomed guest speaker Laurel Richardson well, with several new members in addition for physical therapy. Members also dis-
to their first virtual branch meeting on May to those who came to the inaugural meeting cussed pain management adaptive devices
30. Laurel, who is the CMTA’s director of in 2019. Several members are from Okla- and one member shared a spreadsheet of
community outreach, talked about moving homa City and the branch has 36 Facebook helpful tools. The tentative date for the
education and meetings online and steps the friends. Some members expressed happi- branch’s Walk 4 CMT is September 9,
CMTA is taking to stay connected with the ness at being able to meet on Zoom, not depending on what happens with social dis-
community during this time. only because of COVID-19, but also because tancing rules in the upcoming months. The
h traveling is difficult for many. The group next meeting will take place in late August.
NAPLES, FL
Four members of the Naples Branch held
their first virtual meeting on Zoom recently,
chatting about how everyone is doing and
feeling during the pandemic. They also talked LEMONAID FOR CMT
about the challenges of CMT. They all enjoyed
the virtual format and will use it again. anner, Reagan and Sloane Fearson were
h
TAMPA BAY AREA, FL Tswimming at their local pool in Fenwick Island,
Two guest speakers addressed the Tampa Bay Delaware, when an announcement came over the
Branch’s virtual meeting on June 6. Dr. loudspeaker: Neighbor Steve O’Donnell was raising
Michelle Arnold spoke about CMT and hearing
loss, and Laura Russell provided information money for a rare disease called CMT. They’d never
regarding social work support for Dr. Nivedita heard of it, but when they heard that a neighbor
Jerath’s neuromuscular clinic at AdventHealth needed help, they immediately decided to put up a
Orlando. More than a dozen regulars tuned in
via Zoom. The next meeting will be held online lemonade stand to raise money for CMT research.
on September 12 and the Tampa Bay Walk It was all their idea and no one pushed them—not
will be held on November 14.
h their parents and not Steve. The youngsters’ big
GREATER MINNEAPOLIS, MN hearts and hard work raised $45 for CMT research Entrepreneurs Tanner, 11; Reagan, 9
The Greater Minneapolis Branch held its first and the CMTA is beyond grateful. and Sloane, 5
Zoom meeting on June 11 with six people in

To learn about upcoming virtual branch meetings please go to the “Events” section
of our website found at www.cmtausa.org/get-involved/events/.

SUMMER 2020 THE CMTA REPORT 25