Imogen was born with Canavans Disease. This account follows her story and that of her parents and sister.
London, England
Joined November 2017
- Tweets1.2K
- Following70
- Followers148
- Likes547
ImogensCanavanFight retweeted
I didn't want to share this, but I'm left with no choice when this individual lists a number of disabilities as if they are on menu at an all you can eat restaurant. Also, he throws in non-binary people and people of colour for good measure for the extra 'culture war cred'
ImogensCanavanFight retweeted
We are thrilled to welcome new Patron @joeldommett - Joel has supported us for the last 6 years and recently spent time at our hospice meeting supported families. We know he'll be a fantastic advocate for our work. Welcome Joel➡️ loom.ly/nXoU-fY
ImogensCanavanFight retweeted
In this month’s @TWmagazines, Tristan talks about the difference that the Dads Who Care group, a community respite project run by Crossroads Care, has made to him and his family. Tristan cares for his 6-year-old daughter, Imogen, who has Canavan Disease. crossroadscarerk.org/its-goo…
ImogensCanavanFight retweeted
A beautiful day for our #SunriseWalk ☀️ Thank you to all our early risers (4.30am start 👏)
ImogensCanavanFight retweeted
Dear Steve,
The NHS is currently operating with a shortfall of over 100,000 staff.
Hope that helps.
ImogensCanavanFight retweeted
Yesterday was #RareDiseaseDay.
We would like to sincerely thank 🙏 everyone that took part in the campaign! We invited you to #LightUpForRare✨ and to #ShareYourColours💙💚💜 and you answered our call beautifully.
Together let's continue advocating for a more equitable society!
ImogensCanavanFight retweeted
8/8 Kids shouldn’t have to Tiny Tim their way onto the telly and disclose their personal medical details in order to get their needs met. There’s got to be a better way?
ImogensCanavanFight retweeted
Share your colours and show your support for #RareDiseaseDay 2022! 💙💚💜
Find out what it's all about 👉 cutt.ly/RPNHBi1👈
ImogensCanavanFight retweeted
Tomorrow is #RareDiseaseDay 💜💚💙
How are you planning on getting involved? Let us know in the comments below! 👇👇👇
ImogensCanavanFight retweeted
When millions of £s of public money is put into community development, that is usually once in a generation funding.
Why should a generation of disabled children & adults lie on a disgusting public toilet floor?
#ExcLOOsion #NoMoreFloors
#ChangingPlaces
ImogensCanavanFight retweeted
My disabled daughter, our disabled children
Some truths:
There is nothing “wrong” with them
They are not “victims”
They are capable of being talked to rather than over
Don’t touch their aids without consent
They are more than perceived & stereotyped charity cases
Thank you
ImogensCanavanFight retweeted
Venues: You've installed a toilet, the signs are up & you're registered on our map… ready to go!
But don't forget to make sure all colleagues are aware of the location and purpose of your #ChangingPlacesToilet so that they can support those who use it #IncLOOsion
ImogensCanavanFight retweeted
I am so close to that magic £10k now. So overwhelmed by the support!! Thank you all!!
Help #NoonanHero Matt reach his £10k target for @noonansyndrome He's running the @LondonMarathon in memory of his brother Mark, (featd in @24hoursinA&E). uk.virginmoneygiving.com/cha…
ImogensCanavanFight retweeted
At a bit of a LOOse end this weekend?
Why not find out more about how to get involved in the #ChangingPlaces campaign?
Get involved, take action and you’ll be #ChangingLives ow.ly/2e0U50F3HOU
ImogensCanavanFight retweeted
To see what #ChangingPlacesToilets mean to those who need them, take a look at our real life stories: ow.ly/FS3j50F3UXA #IncLOOsion #SupporterSunday
ImogensCanavanFight retweeted
Help turn the internet blue on 4/18/21 exactly one year since Maxie left this earth. Bright blue was his favorite color & we're inviting everyone to wear blue & tag us & share pictures on social media: hashtags:
#MaxieForever
#RememberingMaxie
#CanavanAwareness
#CureCanavan
ImogensCanavanFight retweeted
Today is #RareDiseaseDay!
There are over 6⃣0⃣0⃣0⃣ rare diseases
🌏 300 million people live with a rare disease accross the world
Rare diseases currently affect 3.5% - 5.9% of the worldwide population👨👩👧👦
Learn more about what is a #raredisease
👉rarediseaseday.org/article/w…
ImogensCanavanFight retweeted
A global chain of lights for people living with a rare disease and their families!
📸Can you name which country and city we can thank for this breathtaking photo? #RareDiseaseDay
💡Hint: Does it look like an igloo to you?
Rare is proud 🦸
ImogensCanavanFight retweeted
👨👩👧👦Rare is many
💪Rare is strong
❤️Rare is proud
Which word do you identify with the most❓
Let us know below!👇
🌎Available in 8 languages!
Download the #RareDiseaseDay materials now!
👉rarediseaseday.org/downloads
ImogensCanavanFight retweeted
Bereaved parents often tell us they feel isolated after a miscarriage or the death of a baby. The COVID-19 pandemic has magnified this sense of isolation. As we mark the start of #BLAW2020 our message is #YouAreNotAlone.❤️
Read more here: bit.ly/3nu5Olk #babyloss