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Stargardt's Connected
3 days ago
Stargardt's Connected

Join us for a day of fun, friendship, and fresh air at our annual Picnic in the Park in Hyde Park! We’re bringing people together from all over the country for a relaxed, joy-filled afternoon, pack your picnic blanket, bring your snacks and enjoy the great company. We can’t wait to see you there!

Where: Parade Ground, Hyde Park, London, W2, 2UH
When: Sunday 10th August
Time: 12-4pm (BST)
Nearest Tube: Marble Arch 5 minutes walk to the park

There will be sighted guides at Marble Arch Station and our volunteers in bright yellow charity T-Shirts to help guide if needed.

Let us know if you are attending by emailing [email protected].

PD: a poster announcing the next annual Picnic in the Park on the 10th August, 12:00-16:00 (BST). At the top of the poster is a photo from last year’s picnic with lots of people smiling in the sun.

#StargardtsConnected #PicnicInThePark #HydePark #Community #Stargardts #CommunityOutings #Networking
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Join us for a day of fun, friendship, and fresh air at our annual Picnic in the Park in Hyde Park! We’re bringing people together from all over the country for a relaxed, joy-filled afternoon, pack your picnic blanket, bring your snacks and enjoy the great company. We can’t wait to see you there!

Where: Parade Ground, Hyde Park, London, W2, 2UH
When: Sunday 10th August
Time: 12-4pm (BST)
Nearest Tube: Marble Arch 5 minutes walk to the park

There will be sighted guides at Marble Arch Station and our volunteers in bright yellow charity T-Shirts to help guide if needed.

Let us know if you are attending by emailing events@stargardtsconnected.org.uk. 

PD: a poster announcing the next annual Picnic in the Park on the 10th August, 12:00-16:00 (BST). At the top of the poster is a photo from last year’s picnic with lots of people smiling in the sun. 

#StargardtsConnected #PicnicInThePark #HydePark #Community #Stargardts #CommunityOutings #Networking
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Stargardt's Connected
4 days ago
Stargardt's Connected

Come and join us for our next Community Zoom session 19th July 17:00-18:30 (BST - UK time).

We are delighted to have Dr. Alekseev, a Principal Investigator for the Belite Bio DRAGON II study at Duke University Hospital (Duke Eye Center USA) joining this session to share recent research updates on Stargardt’s disease and providing an update on the DRAGON II Study clinical trials. Dr. Aleeksev’s clinical focus is on inherited retinal degenerations, including conditions like retinitis pigmentosa, Stargardt disease, macular pattern dystrophies, syndromic retinal degenerations, and mimickers like autoimmune and iatrogenic retinopathies. scholars.duke.edu/person/oleg.alekseev

In the second part, we will have our usual breakout sessions where you’ll have the opportunity to speak to others in smaller groups and share your experiences.

Here is the link:
us02web.zoom.us/meeting/register/_Tcxt2ydQ3uqDrNSqHT9Kg

PD: a poster with a yellow background and black writing announcing our upcoming Community Zoom session on Saturday 19th July at 17:00 BST.

#StargardtsConnected #Stargardts #BeliteBio #CommunityZoomSession #ClinicalTrials
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Come and join us for our next Community Zoom session 19th July 17:00-18:30 (BST - UK time). 

We are delighted to have Dr. Alekseev, a Principal Investigator for the Belite Bio DRAGON II study at Duke University Hospital (Duke Eye Center USA) joining this session to share recent research updates on Stargardt’s disease and providing an update on the DRAGON II Study clinical trials. Dr. Aleeksev’s  clinical focus is on inherited retinal degenerations, including conditions like retinitis pigmentosa, Stargardt disease, macular pattern dystrophies, syndromic retinal degenerations, and mimickers like autoimmune and iatrogenic retinopathies. https://scholars.duke.edu/person/oleg.alekseev

In the second part, we will have our usual breakout sessions where you’ll have the opportunity to speak to others in smaller groups and share your experiences.

Here is the link: 
https://us02web.zoom.us/meeting/register/_Tcxt2ydQ3uqDrNSqHT9Kg

PD: a poster with a yellow background and black writing announcing our upcoming Community Zoom session on Saturday 19th July at 17:00 BST. 

#StargardtsConnected #Stargardts #BeliteBio #CommunityZoomSession #ClinicalTrials
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Stargardt's Connected
5 days ago
Stargardt's Connected

We had a super time at the Goff’s Oak Summer Fayre this weekend!

As well as having a charity stall, we were thrilled to be chosen as one of the 3 charities the Fayre had decided to support and fundraise for.

Our fun fundraising game of Blind Pong (our version of Beer Pong!) was very popular where players wore glasses simulating Stargardt’s and then had to try and throw a ball into a cup for a prize.

It was a hugely successful day with lots of family fun on offer and the crowds were even treated to a live performance from our sensational charity ambassador @_katriona_jazz_official, a talented jazz singer, who lives with Stargardt’s herself 💫

Thank you to everyone who stopped by to play, donate, or simply find out more, your support means so much to us.

PD1: A photo of Rosie on the left, and Bhavna on the right, standing in front of the Stargardt’s Connected stand, both wearing yellow shirts.

PD2: A photo of the Stargardt’s Connected stand at the summer fayre with a poster for our Blind Pong game and bags of sweets in front of it.

PD3: A photo of Bhavna, on the right wearing a yellow Stargardt’s Connected shirt with the Mayor of Broxbourne Patsy Spears, on the right wearing a red dress. They are standing either side of a Stargardt’s Connected sign.

PD4: A photo of Bhavna on the right wearing a yellow Stargardt’s Connected shirt, with the MP for Broxbourne Lewis Cocking on the left wearing a smart pink shirt.

PD5: A photo of Katriona, our lovely ambassador, singing at the summer fayre. She is wearing a lovely blue dress.

PD6: A collage of all the different activities that were available at the summer fayre.

#StargardtsConnected #GoffsOakSummerFayre #BlindPongChallenge #LivingWithStargardts
... See MoreSee Less

We had a super time at the Goff’s Oak Summer Fayre this weekend! 

As well as having a charity stall, we were thrilled to be chosen as one of the 3 charities the Fayre had decided to support and fundraise for. 

Our fun fundraising game of Blind Pong (our version of Beer Pong!) was very popular where players wore glasses simulating Stargardt’s and then had to try and throw a ball into a cup for a prize. 

It was a hugely successful day with lots of family fun on offer and the crowds were even treated to a live performance from our sensational charity ambassador @_katriona_jazz_official, a talented jazz singer, who lives with Stargardt’s herself 💫

Thank you to everyone who stopped by to play, donate, or simply find out more, your support means so much to us. 

PD1: A photo of Rosie on the left, and Bhavna on the right, standing in front of the Stargardt’s Connected stand, both wearing yellow shirts. 

PD2: A photo of the Stargardt’s Connected stand at the summer fayre with a poster for our Blind Pong game and bags of sweets in front of it. 

PD3: A photo of Bhavna, on the right wearing a yellow Stargardt’s Connected shirt with the Mayor of Broxbourne Patsy Spears, on the right wearing a red dress. They are standing either side of a Stargardt’s Connected sign. 

PD4: A photo of Bhavna on the right wearing a yellow Stargardt’s Connected shirt, with the MP for Broxbourne Lewis Cocking on the left wearing a smart pink shirt. 

PD5: A photo of Katriona, our lovely ambassador, singing at the summer fayre. She is wearing a lovely blue dress. 

PD6: A collage of all the different activities that were available at the summer fayre. 

#StargardtsConnected #GoffsOakSummerFayre #BlindPongChallenge #LivingWithStargardtsImage attachmentImage attachment+3Image attachment
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