Today marks World Braille Day celebrating the birthday of Louis Braille. Louis Braille invented Braille, a tactile reading and writing system for those who are visually impaired.
World Braille Day not only raises awareness of Braille, but also the importance of creating accessible communications.
Thank you to @RNIB for generating Stargardt’s Connected in Braille.
The image is a graphic showing black Braille dots which spell Stargardt’s Connected. Below is a pink bar and the text “Stargardt’s Connected” and “Remember- Braille is read by touch, this is just a visual representation”. The RNIB See Differently logo is on the bottom right. ... See MoreSee Less
What a fantastic year it has been for Stargardt’s Connected! 😀
We are extremely proud of our achievements this year. We started off with a relaunch of our website Stargardtsconnected.org.uk in February and want to thank James Burden from Perfectly Digital for his superb work in designing and upkeep of the website. 🙏
In May, we became a Registered Charity 🙌- the first and only Stargardt’s Charity in the U.K.! We were over the moon as this marks a huge step in terms of raising awareness and funds for support and research.
We have continued to raise awareness of Stargardt’s 👁️🗨️. From being invited to Parliament on Rare Disease Day in February, speaking to the Local MP who raised awareness of Stargardt’s in the House of Commons, to doing school assemblies, presentations, having a stand at different Charity events and even making a film with RSBC, we have been committed to raising the profile of Stargardt’s.
We have loved holding events and meet ups 🤝 from art sessions, our annual Picnic in the Park, cooking sessions and our Christmas Meet up. It has been wonderful meeting some of the Stargardt’s community but also understanding the importance of support, sharing stories and knowing that you are not alone. 🧺
🙏As we are growing, we are building our team and as well as our wonderful Board of Trustees, we are very excited to have Sarah Stiffin, Catherine Thornley and Alice Cadman joining us on board. Thanks also to Professor Michaelides for taking on the role as our Medical Advisor. We are extremely grateful for their excellent work, time and effort in supporting the cause. 😃
Nutrition is a big topic around Stargardt’s and therefore for National Eye Health Week, we launched our Vitamin A and Stargardt’s Disease booklet. The objective was to provide clarity around the subject of nutrition and Stargardt’s Disease. We have paper copies of the booklet available and it is also downloadable on our website! 🍏🥗
Fundraising is a crucial part of Stargardt’s Connected as part of our commitment to raising money for research and support. A huge thank to those who have donated and fundraised for us – we are extremely grateful as every bit counts. 🏃♀️
And last but not least, THANK YOU ALL so much for your continuous support. We couldn’t do this without you! 💓
We have big ambitions for 2020 💪 and are looking forward to building on our work and reaching out further. We are passionate about raising awareness, raising funds for support and research and growing our community. 😃
Since Ethan’s diagnosis of Stargardt’s 4 years ago, we have faced many challenges but I can confidently say, we haven’t stopped him living life to the fullest. A positive and can-do mindset has helped us champion through those tricky times.
In Ethan's own words, “The limit is what you choose” ✨
Wishing you all a very Merry Christmas and a Happy New Year.
xx ... See MoreSee Less
