Not a lonely journey

The first travel guide

for people with SMA

As part of Biogen’s ongoing commitment to providing resources for patients, caregivers and HCPs navigating the struggles of SMA, we are proud to present Not a Lonely Journey, a Together in SMA initiative that collects the travel experiences of people living with SMA to create practical resources that inspire others and help expand the boundaries of their world.

The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.

SHARE
YOUR STORY

Kim’s guide is just the start of our adventure with people living with SMA. If you’d like to share your experiences, whether travelling around your home town or another continent, please reach out to help inspire others around the world.

Contact form

You can find a digital version of our first Not a Lonely Journey project, a travel guide co-authored with people living with SMA and travel journalists which shares motivational and practical advice to disabled travellers who are planning on seeing more of the world. Explore Kim’s journey via the digital experience below:

Download in PDF

APPS

Before setting off, it can be useful to
download a few apps to make the journey
easier, such as Google Maps’ Wheelchair
Accessible Routes function.

ACCOMMODATION

When travelling, websites such as
Bookingbility or Village for All can help you
find accessible accommodation solutions
for motor, visual, hearing or mental
impairments.

SOME USEFUL GADGETS

Having the right gadget with you can save the day, if not the whole holiday.

Here are some practical items that could do the trick while you are travelling:

A smartwatch connected with apps
An additional front wheel that can be attached to the wheelchair for less accessible terrain
Suction cup handles that can be easily removed, transported and used in all bathroom environments
Telescopic bed rail
Aids for eating, such as folding cutlery, universal handled for cutlery, pens and other utensils, beakers with spout, sock threader, long-
handled bath brush
Swivel disc for moving from bed to wheelchair
Universal wheelchair cover

HOW TO THRIVE WITH LOST LUGGAGE?

Sleeping mask

This might seem odd, but a sleeping mask is an amazing tool for any traveller. You never know when you might need to sleep in a busy airport terminal or shut out the light in a hotel room with thin blinds. Sleep is essential, so don’t forget this!

Smartphone

This is less odd, this is the connected smartphone age. With a smartphone (and obviously its charger) you can navigate any city, find any amenity, and if something does go wrong, reach anyone for help.

Wheelchair charger

If like me you have a motorised wheelchair, don’t forget to bring the charger! It’s a simple mistake that can make the journey a lot less accessible.

DSLR Camera

As a travel blogger this is essential, but it’s great advice for everyone. These are precious memories, especially if the journey itself is a huge accomplishment. Don’t forget to take a photo to have the moment forever.

Not a Lonely Journey has received widespread recognition for its commitment to helping patients around the world.