The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rett UK is supporting this global awareness raising day by launching a new video featuring Dr Andreas Rett and Dr Alison Kerr talking at one of our first Family Weekends in 1987. So much has moved on since then, the clothes, the equipment, the language around disability but most importantly our knowledge of Rett syndrome. What remains constant is the message that To Know Her Is To Love Her and their ability to communicate with their eyes is now revealing what as parents we have always maintained; that their understanding is actually very good. Thanks to the research that is going on all over the world we are getting closer to drugs and treatments being available that will improve their quality of life. Support today, hope for tomorrow.
Many thanks to Yvonne Milne, the families and the professionals involved in the video.
#rettsyndrome #irsf #rettsyndromefoundation
Five Tips for Rett Syndrome Music Activities
- Play eye-catching instruments, such as an ocean drum or radiant tambourine in different positions to help visual tracking.
- Use pictures of favorite songs, instruments, or singers during choice making activities.
- Try a mallet-cuff, Velcro wrist bells, a cabasa or a chime tree as accessible instrument options from West Music.
- Add music instrument sound effects to stories to gain attention and focus.
- Record the last word of a song on a switch and have your child fill-in-the-blank. For example, record “O” on a switch, and sing Old MacDonald, leaving off the “O” in “E-I-E-I-O” and waiting for her to hit the switch.