Understanding Rare Chromosome and Gene Disorders

Unique’s Funday Friday | 19th June 2020

We would love you to join us for a Funday Friday on the 19th June to celebrate our Unique shining stars and the resilience we’ve shown as a community over the last few weeks. We want to reach out to make sure everyone around the world living with a rare chromosome or gene disorder is able to access the support and information they need, and become a part of our growing community.

Due to the current circumstances, like many charities we have taken the difficult decision to postpone this year’s complete awareness week. We know many of you had been planning fun & exciting ways to raise funds and awareness for Unique and rare chromosome & gene disorders, and we hope you will still be able to do these.

The coronavirus pandemic and subsequent lockdown has had a huge impact on everyone. Social distancing and self-isolation were required to protect ourselves and loved ones. However, many of us will already be familiar with life in isolation and spending long periods of time at home. For many Unique families, this IS our normal! People living with a disability and their families will be well acquainted with the need to adapt to restrictions, the challenges with access and taking extra precautions during flu season etc.

To help beat the isolation during lockdown, we have been able to make use of video chat platforms such as WhatsApp, FaceTime and Zoom to name a few. We have seen professionals offering telehealth appointments via phone calls and/or video chats and schools offering online tutorials. A lot of these adaptations were not provided to us prior to the pandemic, making us wonder why these facilities weren’t available to our community before!

To shine the light on Unique families, we want to have a Funday Friday to help bring our community together and have some fun!

Here’s a few ways to get involved: 

Use our new Facebook profile photo frame (search for ‘Unique’s Funday Friday’, available on Facebook from 14th June 2020) and banner.

Unique’s Funday Friday Facebook Banner
Unique’s Funday Friday Facebook profile photo frame – available on Facebook from 14th June.
Unique’s Funday Friday Instagram post

Do something Unique!

Unique’s Funday Friday 15 minute quiz

We have set up two quizzes and it’s just £3 to register and play. There are cash prizes for 1st, 2nd and 3rd place. 

9am (BST) Quiz:  https://www.virtualquizevents.com/quiz/friday-funday-15-minute-quiz/

5pm (BST) Quiz: https://www.virtualquizevents.com/quiz/friday-funday-15-minute-quiz-2/

Mindfulness Taster Session

Join in our Mindfulness Taster Session on Zoom – from 19.45 to 20.30 BST on Friday 19th June. Please email Beverly, our CEO, on info@rarechromo.org for more detail if you’d like to be involved.  Beverly’s Mindfulness teacher Sue Bolton is running this session for Unique families for free and Sue hopes to give you some little starter exercises to help you cope with your stresses and anxieties.

Unique’s Coronavirus Crisis Appeal

Please help us – if you can – to make up the deficit in fundraising by donating to our special Unique Coronavirus Crisis Appeal:

https://www.justgiving.com/campaign/uniquescoronaviruscrisisappeal

We understand that many people are under financial strain, but we are so grateful if you can help. And many thanks to those of you who have already donated to Unique

Thank you for supporting Unique and raising awareness of rare chromosome and gene disorders & the support Unique offers.

We are here to support you with your awareness, fun and fund-raising and happy to help with any questions you might have. We would love to hear your plans and ideas, please do get in touch at arti@rarechromo.org.