It would be easy for
Bernadette Scarduzio to just give up.
She could live anonymously and just sit in her wheel chair by a window,
look out with a blank stare and just watch the world go by.
She has CMT with a 1A
designation. For those unfamiliar with
CMT, that would be Charcot Marie Tooth disease, a relatively rare disorder —
without a cure — that is often mistaken for muscular dystrophy.
The disease is marked by
wasting-away; a deterioration of muscle tissue, especially in the legs and
hands. And treatment for those severely affected
often is that of repeated surgical procedures … in a word, gruesome.
It is progressive … it
robs one of their life one day at a time.
That is, if they let it ... Bernadette Scarduzio is not about to.
In documentary filmmaker
Josh Taub’s Bernadette, due out on DVD this
coming Sept. 17 from Cinema Libre, we learn of both the disease — an inherited
disorder (her father had a milder form, as does her brother) — and Bernadette’s
fight, not only with the disease itself, but her determination to get CMT “out
of the closet,” which is often kept quiet because of the familial hereditary
factor.
Indeed, in is often dubbed “the biggest disease no one has ever heard of.”
Indeed, in is often dubbed “the biggest disease no one has ever heard of.”
With Bernadette bring your
heart and some Kleenex and be prepared for both an education and a glimpse into
what the human spirit can overcome.
Here we go! Amazing film about an inspiration gorgeous girl who lives with the biggest disease no on has heard of, CMT...now the world will know. Congratulations my dear friend! I love you, Allison Moore, Founder/CEO of Hereditary Neuropathy Foundation. For more information on Charcot-Marie-Tooth (CMT) and our Therapeutic Research In Accelerated Discovery (TRIAD) program visit www.hnf-cure.org
ReplyDeleteA story of a brave woman who lets us in to here life and her heart! Soon the world will know about CMT. Thank you!
ReplyDeleteCongratulations, Bern! It's finally getting out there more than ever!
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