From Stargardt's Day to Stargardt's Connected
An interview with Bhavna Tailor for World Rare Disease Day 2019
What has happened following Stargardt's Day in 2017?
It has been nearly two years since Stargardt’s Day - a first ever day in the UK to bring together people with Stargardt disease, their families and supporters along with charities as well as clinicians and researchers from UCL Institute of Ophthalmology and Moorfields Eye Hospital.
Championed by Bhavna Tailor, whose son Ethan was diagnosed a year earlier at the age of just 7 years, Stargardt’s Day aimed to bring people together to talk about the support and research here today, what was missing and what the future may have in store to change the lives of those living with this potentially blinding form of inherited macular sight loss.
Next month it will be two years since Stargardt’s Day (held 18 March 2017). We wanted to mark World Rare Disease Day 2019 by catching up with Bhavna to get an update on how she and others from the day have taken up the call to help increase awareness of Stargardt disease and reduce the isolation people with Stargardt's have felt for so long. Today also marks the launch of a new Stargardt's Connected website.
Bhavna Tailor, Chief Executive Officer & a co-founder of Stargardt’s Connected
Hi Bhavna, so how are you and Ethan doing and what have you been up to since Stargardt’s Day?
We have been very busy. Ethan is now 11 years old and in his final year of primary school. He is doing well and has good support from the school.
Since Stargardt’s Day, we have continued to try to raise awareness of Stargardt’s, fundraise and organise events for the Stargardt’s community. Ethan has been really active in this; delivering presentations to the whole school, fundraising and he has even been asked to open a new branch of Vision Express!
Our most significant endeavour though has to have been setting up a new patient group called Stargardt’s Connected. Those of us who were involved in the patient panel on Stargardt’s Day felt so enthused by the day and we really wanted to do something to build on the appetite attendees had for coming together and supporting each other.
That is really exciting. So what should people know about Stargardt’s Connected?
Our mission statement is to raise awareness, give support, seek a cure. We started on this journey really simply, by building a website and reaching out to find our broader community. We don’t just see that community as being one of just patients but also their families, other patient organisations and charities, researchers and clinicians too. We all have to work together to meet these aims.
As well as the website we have run social and networking events including picnics in Hyde Park, a Goalball session as well as art therapy workshops for adults and children and pub trips after Sight Village South-East. These events have helped us to reach new people and provide patients and families, opportunities to meet others and share tips and advice, which so many people at Stargardt’s Day said they wanted
There is such a need for support, particularly at the time of diagnosis, so we have also contacted the main ophthalmology consultants in England who see Stargardt's patients. They have been happy to support us and to receive flyers from us, to pass onto patients, about Stargardt’s Connected, the work we have been doing and how to contact us.
As you say, there are a number of charities and patients support groups out there already (some of which came to Stargardt's Day), so what is Stargardt's Connected offering that is different?
I know that when Ethan was first diagnosed, I was utterly devastated and in shock. I’d never heard of the condition before. What you are told there and then doesn’t necessarily sink in and you aren’t really able to think about what comes next. It’s afterwards when you have left the hospital that you start looking for more information and most of us go online for this.
When searching for ‘Stargardt’s’, people want to find useful, helpful and reliable information but there is so much out there it can be confusing where to start. So, while we don't have the capacity right now to fund a big research project or offer a patient helpline, what we can do is make it easier by making our website a trusted, one-stop-shop of information and support for anyone affected by Stargardt’s.
There has never been a specific organisation for people with Stargardt’s, and we think patients deserve one. However, we always thinking about what will benefit our community most, so we are really keen to partner with other charities and organisations to helps us reach and support the 6,000 or so people in the UK with Stargardt’s.
In fact, we wouldn't be where we are right now without the support of other charities. Through Rare Disease UK, Genetic Alliance UK, the Small Charities Coalition and Findacure, we’ve had access to training and mentoring that has really given us a running start. We have also been supported by dozens of other charities who have publicised our events, shared our leaflets and offered us a platform to promote the work of Stargardt’s Connected and raise awareness of this condition.
Looking at your website it seems like you’ve also had an opportunity to do a lot of publicity about Stargardt disease - what has that been like and how has it helped?
Yes, I’ve been eager to raise awareness of Stargardt’s (because it is rare) and have been lucky enough to have the chance to do so on BBC News, in local and national newspapers, to present at school and to people in the eye sector, and I have even been to parliament.
I am always trying to raise awareness and network wherever I go, even on holiday, and have met so many people who are happy to support our cause. This has meant we’ve been able to educate people about Stargardt’s, find new members of our community and raise funds to support our work.
It sounds like a lot has been achieved already, but what’s next, what does the future hold?
A lot we hope! We are passionate, enthusiastic, determined and have big ambitions for Stargardt’s Connected. The main focus for this year will be to register as a charity. We feel this will help us with fundraising for our networking events and to put towards supporting Stargardt's research.
We aim to build our Stargardt’s Connected team further and grow our partnerships. So far we have been London-centric with our events, but as we grow and get to know our community better, we would like to hold networking events around the country. We even have plans for a second Stargardt’s Day, so watch this space!
Last autumn we began a project on nutrition because we know that people receive conflicting advice about vitamin A, which might (in some forms) be bad for people with Stargardt’s. We are currently working with some experts in diet and nutrition to help clear up some of the confusion for our community.
One of our ultimate goals would be to ensure there is a clear pathway for Stargardt's. Right now when people are diagnosed not only is it a condition no one has ever heard of but you are told there is no treatment or cure. You are not given much else in terms of information and you are sent home. We want to make it so that no one with Stargardt’s is without information or is left isolated and without appropriate support.
What we are most excited about today however is the launch of our new website (stargardtsconnected.org.uk) which will help Stargardt’s Connected become that trusted one-stop-shop of information and support I mentioned. We want to encourage our community to tell us what that they would like to see on the site and for it to become a place they can share their recommendations with others. I want to also say a huge thank you to Perfectly Digital who designed the site and to Professor Michel Michaelides from Moorfields Eye Hospital and UCL Institute of Ophthalmology, who has been really supportive of the work we are doing and acting as the medical advisor to Stargardt’s Connected.
And finally Bhavna, what would you like to say to anyone reading this who has been affected by Stargardt disease?
Please do look at our website and contact us. You can also join our mailing list to receive updates and relevant information. We want you to know you are not alone. We are always happy to chat with anyone who has been affected by Stargardt’s or direct you towards the various support groups and online communities that are there. If you can, do come to our events, they are an excellent opportunity to meet others.
We are very excited about what the future holds. As our name suggests we want to be connected to our Stargardt’s community in every sense; you really are at the heart of everything we do.