School Accommodations for CMT
Presented by: Brooke Warren
Accessible College
CMT-Connect
Presented by: Annie Tulkin, Founder and Director of Accessible College
Dr. Gabrielle Ficchi
What are the key ingredients and practices for raising empowered kids with CMT? Dr. Ficchi is a licensed therapist with specialty areas of focus on individuals with disabilities.
No Child Left Behind (NCLB)
NCLB seeks to ensure that all children have a “fair, equal and significant opportunity to receive a high quality education.” It requires that all groups of children make adequate yearly progress, including children with disabilities, and requires that teachers are highly qualified. Children taking standardized tests required by NCLB are entitled to the accommodations that are set forth in their 504 Plan or IEP. For kids with CMT, this might mean extra time on standardized tests or assistive technology.
Children’s Books
Arlene on the Scene
Arlene on the Scene & Arlene, the Rebel Queen, was written to raise much-needed awareness about CMT. The character and book were inspired by Grace Caldarone, a young girl living with CMT and facing each day with optimism, courage, and humor. Grace’s Mom Marybeth and her best friend and former Board Member, Carol Liu, co-authored the books. HNF has sold and donated over 5,000 books and has participated in “author days” at 15 schools supporting children living with CMT and other disabilities. We also offer a teacher’s guide!
Brace Yourself for Another Day
by Ginnell McDonald.
Peaches, the book’s main character, has muscular dystrophy and wears leg braces. She imagines a world without leg braces and eventually realizes how helpful her braces really are! She discovers the importance of being your best each day and celebrating the things that you can do.
Amazon Wishlist
HNF’s focus is to support people living with CMT and their families with critical information to improve their quality of life, and we are dedicated to finding treatments for CMT. We provide a strong organizational voice to those living with CMT worldwide.
The HNF team and supporters have curated an ULTIMATE wishlist of CMT-friendly products on Amazon to make life with CMT easier!
We hope you find this list helpful!
GRIN
Click the button below for more information and access to GRIN, as it is important to document the impact of CMT on the quality of life in childhood.
Team CMT Kids
Founded in 2013, encouraging kids to stay active and proudly wear their Team CMTkids shirt to raise awareness and funds for CMT research.
Pediatrics and CMT
Learn more on this topic
Latest News and Related Blog Posts
Empowering Kids with CMT
What are the key ingredients and practices for raising empowered kids with CMT? Dr. Ficchi is a licensed therapist with specialty areas of focus on individuals with disabilities.
Elementary & Middle School Accommodations for CMT
When it comes to education & CMT there are many ways we can advocate for and empower our children and young adults.
Pediatric Care & Pain
What are the key CMT milestones, markers, and interventional therapies to consider when raising a child with CMT?
Accessible College: NEW CMT-Connect Webinar!
HNF is proud to have teamed up with Accessible College to help families and individuals with an introduction to the skills and tools needed to ensure a successful transition to and through higher education.
Brace Yourself For Another Day
Ginnell McDonald interview on writing Brace Yourself For Another Day
Treating Children with Charcot-Marie-Tooth: Surgery
We answer questions from parents about treating their young children with orthopedic problems.