Nemaline Myopathy Support Group

Resources

Therapies & Personal Development

Communication, Speech Therapy and Sign Language

Makaton Vocabulary Development Project.
The Hanen Centre Helping Children Communicate.
Sign with your baby. US website with a link to the UK version too.

On the topic of signing, we found that the Baby Signing Time DVDs ( http://www.babysigningtime.com/) have been fantastic for teach our daughter signing from the age of 1, as well as us and her big sisters! Gavi says a few words, including Mama and Elmo, but does most of her communicating through signing right now. I'm sure she would have more frustration around communication if she didn't know the 50+ASL signs that she has. These DVDs were recommended to us from another Mom who used it with her daughter with NM and I highly recommend them to anyone. Josh (in Toronto).

Drew used a Tobii I think hers is the c12? It works great when she is willing. But now that I'm trying to get her to do shapes and colors instead of games she doesn't want to do it.

April Potenti (USA)

Marie uses the EyeGaze system. At the time we got ours, that was the only one available. Also, they had not used it with children. I had read about it in my own research & asked about it to Marie's speech therapist. We had to have an augmentative communication device evaluation through Children's hospital speech dept. to determine she could not use any other switch. We tried them all!
She was able to use her thumbs at one time & had a touch switch, but she has since lost that ability. Her system includes a slate PC with Windows, a camera, & Eyegaze software called Eye Response. She speaks with either software called Speaking Dynamically Pro (more complex for me) or another called Lifeskills (has a keyboard on screen). Marie spells out the word. After the 1st letter it pops up prediction words. She can then select the word instead of spelling it out completely. It also has pre-programmed phrases and games.
For a while all Marie would do were games. She is awesome at Whack A Mole! But last week when she typed her sentence for me...OMG she was quick!. All those wack a mole games quickened her reflexes! I know that was probably way more than you wanted, but it's a complex system.

Amy Rhodes (USA)

Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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