Page 19 - 2021 Winter CMTA Report

INPUT ON CMT AWARENESS

IN SCHOOLS SOUGHT

Advisory Board member and educator Sarah
CMTA Kesty is seeking input from the community on
how to encourage CMT awareness in schools.
Sarah entered a contest sponsored by Sarepta Thera-
peutics that asked educators to create lessons that build
understanding of, and empathy for, rare diseases and those
affected by them. The winning lessons will be posted on
sharemylesson.com.
“Rare Lessons” is a program intended to promote the
development and implementation of rare disease lessons in Sarah talks with Emaya G. about
the K-12 classroom. According to the company, “We believe the characters in Sarah’s book,
Everyone Has Something.
that rare disease education is an important component of
disease awareness and diversity and inclusion within the
classroom setting and that the study of rare diseases sets Sarah is seeking answers to the following questions
the foundation for enhanced education throughout stu- from the community:
dents’ academic lives.” • What would you like other students to understand about
Kesty said she was honored to participate in Rare CMT?
Lessons, which fosters the empathy- and understanding- • What do school leaders need to know to improve your
building she would like to see in all classrooms. Noting that child’s experience at school?
her CMT was a particular challenge when she was younger, • What challenges do you face in sharing about CMT with
she said, “Lessons like these would have truly helped my others?
classmates, teachers and me better understand the impact Drop Sarah an email at info@cmtausa.org and she’ll
and nature of rare diseases.” address your concerns in an upcoming article. k

climbing or deep-sea diving couple glasses of red wine every I was positively giddy while
can produce a metabolic shock, day,” I added, knowing it was I waited for the elevator. You’d
which, in turn, might cause often more, rarely less. “One is think I’d just been told that with
a temporary central nervous for my heart health, and the a simple change of diet or some
system problem, in your case other because I like it so much.” easy to take medication, all my
perhaps encephalitis, with some The proportion was actually troubles would be over. I still
of the symptoms you’ve had.” weighted decidedly toward the had to contend with the residual
I was stunned. “Whoa,” I latter, but I figured he didn’t effects of encephalitis and the
said. “What are the chances of need to know that. “Is it some- slow, progressive decline of
that?” thing I should cut out CMT. But I would not end up
“Not high. There might be altogether?” I asked, bracing like my mother or my grandfa-
10 or 12 known cases of this hap- myself to receive the bad news. ther, who were both severely
pening.” “Whatever you are doing, hobbled at a much younger age
I just shook my head in dis- keep it up. It’s really working. than I was then. I could manage
belief. After a pause, he asked, In fact, you might want to share my condition well without fear of
“Well, do you have any other some of your experiences with complete incapacity. For the first
questions?” the support group, particularly time since my diagnosis at age
After a deep breath, I said, your approach to conditioning. 12, I felt truly lucky. k
“A neurologist told me that alco- They may benefit from it.” Jeff teaches at Roosevelt University
hol damages the sheathing “I’ll do that,” I said, adding, and has published recently in Adoptive
Families Magazine, The Omaha World-
around nerve fibers, so I should “It might be a multivolume
Herald, Brevity Nonfiction Blog,
give it up immediately. I drink a work.” Hippocampus, and elsewhere.

WINTER 2021 THE CMTA REPORT 19