Archive for May, 2016

Sunday, May 15, is TSC Global Awareness Day. As defined on http://www.tscinternational.org/, “Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers.  The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins.” – See more at: http://www.tscinternational.org/pages.aspx?content=6#sthash.pW5YBv5G.dpuf


One of our students here in Holliston has Tuberous Sclerosis Complex, or TSC. Charlotte is a cheerful girl who loves to laugh and have fun.


Charlotte’s mom kindly shared the following:

“Last year Charlotte’s Dad created the campaign of #IAMTSC. The idea is that even though this disease is rare, it touches not only the person living with it but all of their friends, family, teachers, doctors, etc.  We are all one working together to better the lives of people with TSC and to one day find a cure.  He [Charlotte’s dad] wrote and directed a series of public service announcements and of course included Charlotte’s story in this one:

Here are some other sites:
We are so grateful everyday that Charlotte has the gift of language.  So many kids are non-verbal and are never able to really communicate.  When Charlotte was a baby, she had a very damaging type of seizure called Infantile Spasms.  Unfortunately, they went undiagnosed for almost 5 months before she started the medication that stopped them.  This could have really affected her language but she has worked so hard to talk and we feel so blessed that she continues to make such great progress with her speech.”


Thanks for taking the time to read this! Please check out the links listed above for more information!

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Check out the American Speech-Language Hearing Association’s (ASHA) page about Better Hearing and Speech Month!


Additionally, the following song was written by one of ASHA’s staff members. He was inspired by his mother, who suffers from a Communication disorder. It’s worth watching!

ASHA Music Video


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