Community Ask for August

And feedback from our July community ask

We’d like to share our Ask Our Community for August.

A community member is asking for suggestions for an appropriate sensory gift for a 1 year old boy affected by infantile Krabbe Disease

If you have any gift ideas or suggestions, please email them to

Thank you to everyone who got involved in our Community Ask in July. We asked about peoples’ experiences using stairlifts, including information for purchasing (brands and types) and advice when using a stairlift. We would like to share the feedback we received:

-One community member has had a Flow2 stairlift for about 4 years. It was installed by Dolphin Stairlifts. The stairlift goes up the stairs backwards. She shared a link to a video showing her son using the stairlift: Facebook Video

-Another community member used the Norfolk stairlift company to install their stairlift. They found them very helpful; they came out to assess and measure the stairs and the individual, and fitted the stairlift within two weeks.

There are a couple of websites which provide helpful information when it comes to choosing and installing a stairlift:

Alex - The Leukodystrophy Charity