I hope you are ok and well in these unprecedented and challenging times as COVID-19 dominates our world. It has definitely taken me a while to adapt to this “new normal” as I homeschool my children and teach my class virtually online during lockdown.
Firstly, it may be not a complete surprise for you to hear that unfortunately we are going to postpone our Stargardt’s Connected Conference, which was scheduled for this July 4th 2020. As there are so many uncertainties at the moment and safety of our community is of paramount concern, we think it is best to postpone till Spring 2021. We will keep you posted with a new date when we have one confirmed.
We will also not be organising any face to face meet ups in the near future, again due to the safety of our community.
In the meantime, we are still very keen to continue to support our community and have been thinking about ways to do so. We know that these are difficult and worrying times for all of us and don’t want you to feel you are alone.
We want to first reach out to you and ask to please share any tips or resources that have been helping you throughout this time. You can email them to me and we are happy to share them to our community through our social media and our newsletters and on the website. We also want to let you know that we are here to support you the best we can so please don’t hesitate to reach out to us. You are not alone!
The following are a list of some resources/signposting that may be of use to you:
Technology is a great way of connecting and many people have been using Zoom technology to connect to others.
Zoom is a piece of technology that you can use for video-conferencing to connect with friends and family, which can be especially useful during these social distancing times.
Here is a link to a tutorial on information about it and how to use it:
You can also download the app if you have a smartphone and here is the link to the tutorial to explain how to do so:
You can sign up by clicking on this link-
With a basic package, you can video chat for 40 minutes for free.
Please let us know any other ways you have been using technology to keep connected that we can share with one another.
Mental Health and Keeping Active
Whilst we are social distancing and advised to stay at home, it is still crucial to make sure we try to look after our mental health as best as possible and are trying hard to keep active if we can.
The Mind website provides useful information about how to cope if people feel anxious about coronavirus, how to manage staying well at home if being asked to self-isolate and taking care of your mental health and wellbeing among other tips and advice:
Every Mind Matters provides general information about looking after your mental health which would be relevant during this challenging time as much as at any other time and provides top tips to improve emotional wellbeing: https://www.nhs.uk/oneyou/every-mind-matters/
There are many Mindfulness apps that can be downloaded. An example is Headspace which is an app you can download onto your smartphone. Although, you may need to sign up and subscribe to some sessions, it has a selection of free meditation sessions you can listen to.
Please make sure you are able to regularly keep in contact with someone either by phone or other (safe) means.
I have found that having a structured daily routine is really helpful for myself and my family, with planned active time.
PE with Joe Wicks on The Body Coach TV YouTube channel.
You probably have heard of Joe Wicks who is doing a daily PE lesson at 9.00 UK time every weekday morning– or you can catch up later. He keeps up a good audio description of whatever he’s doing – make sure there’s enough space and it’s not just for children either- we have been all joining in as a family. Here is his Utube channel.
To find out what local support there is for you in the UK,
covidmutualaid.org lists all the national and local groups helping out with COVID-19.
Both the Macular Society and Retina UK have really useful tips on their website on dealing with social isolation.
You can also visit our website in the Emotional Support section which gives information regarding support for people with Stargardt’s. This includes FaceBook groups and helplines.
Learning and Leisure
Audible from Amazon
The Audible audiobooks app will be free to use whilst schools are closed – there are hundreds or possibly thousands of books to listen to. Simply use your smartphone, tablet or laptop to register with them and choose away.
Here is the link:
For low-vision pupils and students, Dolphin Computers are giving 3 months free access to their SuperNova screen magnifier software. They are also running some free webinars for parents and carers about helping young people to learn at home. Search for Dolphin SuperNova and go to their news page. Here is the link below:
Social Distancing when out and about
A topic that came up with our team was how people with Stargardt’s are able to keep their social distance when they are out and about. We discussed the challenges of keeping distance when you are visually impaired and talked about ways this could be resolved.
One of our team members says that he walks on the side of the pavement (but not on the roadside), meaning that he is able to keep his distance from others. If you do have a cane, then using it at this time might encourage others to make sure they provide social distance from you.
Please share your tips with us so we can share with the community.
RSBC have organised some online support sessions which will be run via Zoom. You can email firstname.lastname@example.org to find out more or ask to join.
This week they have:
Thursday 2nd April – 16-25 Supper Club, 5:00pm – 6:00pm
Lead Staff: Jelani and Vivek
Re-connect with your peers and get talking. Take out some time to catch up with supper club buddies and meet new ones, reflect on our current situations and brainstorm ideas for Virtual Supper Clubs moving forward.
Friday 3rd April – Employment Virtual Group, 12:00pm – 1:00pm
Lead Staff: Mark and Alex
Do you need some clarity about employment during lockdown? What kinds of things we can be doing that will help us with employment when we get back to normal? What alternatives to employment are there if the recovery takes a long time? Get the latest from our very own Employment Support and Assistive Tech Advisors.
Saturday 4th April – Creative, 8 – 15yrs, 10:00am – 11:00am
Lead Staff: Owain and Vivek
Join us on the virtual creative session and get involved to produce some new content – there’s plenty of inspiration around!
Saturday 4th April – Creative, 15 – 25yrs, 11:15am – 12:15pm
Lead Staff: Owain and Vivek
LOOK UK have arranged a range of online sessions- ranging from parent support chats and student sessions – contact them at email@example.com
to find out more.
Daniel Williams of Visualise Training and Consultancy will be joined by equality law barrister Cathy Casserley and expert equality lawyer Chris Fry who will explain your rights, share example cases and answer your questions.
Know your rights as a person with a visual impairment so you can challenge your wrongs. Free webinar 7.30 – 8.30pm Thu 2ndApril
· Are organisations refusing to provide reasonable adjustments due to Covid-19?
· Do you receive inaccessible information?
· Are some websites inaccessible?
· Are you being treated unfairly because of your visual impairment?
· Have you been refused access as a guide dog owner?
The Equality Act 2010 protects us and ensures we get equal access to services. We’ll explore how the Act can support you and how to take action if you are discriminated against.
Join us from 7.30 – 8.30pm on Thu 2nd April with the following link https://zoom.us/j/699910396
A petition has gone live which aims to persuade government to add blind and partially sighted people within the priority group for online shopping.
If you would like to support the campaign please use the following link.
Helping with COVID-19 research
Are you are keen to try to help the research around COVID-19?
There is a project run by Kings Cross Hospital to help track COVID-19 in the U.K with the idea to help slow down the outbreak. It is a daily tracking app that you can download, where you self report how you are feeling physically.
The following survey is also something people can take part in to contribute to the effort to fight the disease. The COVID-19-COS project brings together patients, the public and health professionals to identify, prioritise and agree on the most important outcomes for research in COVID-19.: https://www.covid-19-cos.org/get-involved/
Finally, Stargardt’s Connected have been thinking of ways of still connecting with the community and we are hoping to arrange some online sessions with different themes that you can join us on. Let us know what would be helpful and we will see if we can signpost or organise ourselves.
We will keep you posted with these.
I know this is a lengthy newsletter but we wanted to share as much information as we could during these uncertain and unprecedented times.
On a very final note, I have taken solace in the fact that as challenging as it may be right now, this time will pass and we will definitely get back to normality again at some point.
Keep in touch and keep safe.
Sending you all love and best wishes,
The Stargardt’s Connected Team