Global ncbrs awareness day
October 9th is Global NCBRS Awareness Day!!!
On Wednesday, October 9th 2024 it is Global NCBRS Awareness Day. Please join us and help raise awareness of this rare syndrome within our wider communities and the medical world, and possibly some funds too.
Below are some of the ways in which you can get involved, spread awareness, raise funds and have some fun, all whilst supporting the NCBRS Worldwide Foundation and all our NCBRS families worldwide.
On Wednesday, October 9th 2024 it is Global NCBRS Awareness Day. Please join us and help raise awareness of this rare syndrome within our wider communities and the medical world, and possibly some funds too.
Below are some of the ways in which you can get involved, spread awareness, raise funds and have some fun, all whilst supporting the NCBRS Worldwide Foundation and all our NCBRS families worldwide.
Help us Spread Awareness...
- Create posts about NCBRS on your social media platforms.
- Share our posts and images on the lead up to and on October 9th.
- Ask family and friends to get involved by creating posts, sharing yours and our posts.
- Set our Logo and Banner as your profile picture and cover photos on social media.
- Tag us and share links to our website & social media channels.
- Share all things NCBRS with your local disability and support services.
- You can download the flyer (2-up on a letter sized page) and/or cards (12-up, double-sided, on a letter sized page) to print and distribute to help raise awareness.
Some key facts about NCBRS you could include in your posts.
- NCBRS was first described in 1993 and the gene was only found in 2012.
- NCBRS is caused by a change in the gene called SMARCA2 on chromosome 9.
- NCBRS is a very rare condition with fewer than 270 confirmed cases worldwide.
- The NCBRS Worldwide Foundation was established in 2020 after 10 years as a support group.
- #GlobalNCBRSAwarenessDay is celebrated on October 9th each year. This date was chosen in honour of June’s birthday. June was the first person to be described with #NCBRS in literature in 1993.
Don’t forget to use the hashtags
#GlobalNCBRSAwarenessDay, #NCBRS & #NCBRSRare.
We would love to see your posts and be able to share them.
#GlobalNCBRSAwarenessDay, #NCBRS & #NCBRSRare.
We would love to see your posts and be able to share them.
Add our profile frames
Add a frame to your social media profile picture to raise awareness of NCBRS and to encourage your friends and family to learn more!
Simply select a frame from the choices below, click the link to be taken to Twibbonise. From there you can add your profile image and upload it to your other social media channels. This can all be done via a smartphone.
Simply select a frame from the choices below, click the link to be taken to Twibbonise. From there you can add your profile image and upload it to your other social media channels. This can all be done via a smartphone.
Donate or Fundraise for NCBRS...
There are lots of ways in which you can donate or fundraise for NCBRS, below are some ways in which you can.
- Coffee morning, in person or virtual.
- Ask Schools/workplaces to hold a dress down day for a £/€/$ 1 donation.
- Ask local businesses and shops to do a raffle.
- Ask community organisations to get involved.
- Do a sponsored walk or bike ride with your friends & family.
- Sponsored scavenger hunt to find all things “Orange” (leaves, traffic cones).
- Create a Facebook Fundraiser and ask family, friends and colleagues to donate.
- Create a JustGiving Fundraiser and ask family and friends to sponsor you.
- Donate through PayPal, JustGiving or check out the get involved page for more ways to donate and fundraise.
- Ask friends and family who may already donate to charities to consider changing to support NCBRS.
Buy our Apparel...
You can purchase our NCBRS apparel and/or other promotional items from our online store to show your support, not only for Global Awareness Day but all year round too.
All profits from sales come directly back to the Foundation so we can continue our mission, supporting and educating families, carers and professionals who work people diagnosed with NCBRS. |
In whatever way you wish to support the NCBRS Worldwide Foundation, be it creating or sharing a post on social media, sharing NCBRS information with your friends & family, doing a sponsored walk or making a donation however small... remember you will be helping us to spread the much needed awareness of NCBRS and support for our global NCBRS family.
Thank you, and remember to have fun and share, share, share... 🧡💚💙
Want to stay up to date with all our latest news, events and more? then sign up to our mailing list.
Thank you, and remember to have fun and share, share, share... 🧡💚💙
Want to stay up to date with all our latest news, events and more? then sign up to our mailing list.
Awareness day Archive
|
2023 | Global NCBRS Awareness Day!!!
We celebrated #GlobalNCBRSAwarenessDay on Monday, October 9th, 2023. We extend our heartfelt gratitude to all our families, supporters, donors, and partners for their support. With your assistance, we have been able to spread more awareness about NCBRS worldwide, raise funds to support our families and promote research, and most importantly, bring together this rare community to celebrate all those diagnosed with NCBRS and those who support them. |
|
2022 | Global NCBRS Awareness Day!!!
On Sunday, October 9th 2022, we celebrated #GlobalNCBRSAwarenessDay! We want to say a huge THANK YOU to all our families, supporters, donors and partners for supporting #GlobalNCBRSAwarenessDay. With your help, we have been able to spread more awareness of NCBRS on a global level, raise funds so we can continue to support our families and promote research, but most of all bringing this rare community together to celebrate all those diagnosed with NCBRS and the people who support them. |
|
2021 | Global NCBRS Awareness Day!!!
On Saturday, October 9th 2021, we celebrated #GlobalNCBRSAwarenessDay! We had a great day and loved seeing all our families, supporters and organisations sharing our posts and creating their own on social media. We would like to thank everyone who got involved to spread awareness of NCBRS and to all the people, businesses and more who either donated or fundraised for us. Thank You |
2020 | First Annual NCBRS Awareness Day!!!
On Friday October 9th 2020, we celebrated our first ever NCBRS Awareness Day! It was a fantastic day and was great to see all our families and supporters sharing our posts and creating their own Facebook and Instagram posts and wearing our apparel. We'd like to thank everyone who got involved to spread awareness of NCBRS and make our first annual awareness day the success it was. Thank You |