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Stargardt's Connected
11 hours ago
Stargardt's Connected

We are absolutely delighted to announce our Stargardt’s Star for August: the incredible Alex Miles.

Alex was diagnosed with Stargardt’s during the COVID pandemic after she and her family noticed her vision was changing. She started sitting closer and closer to her laptop while studying at home. Alex was just 15 years old and due to start Year 11 the Monday after her diagnosis.

It was a huge shock, but in true Alex style, she didn’t let it stop her. She completed her A-Levels with excellent grades, went on to university, and trained to become a primary school teacher. This helped Alex feel fulfilled, happy, and independent, completing teaching placements, enjoying contact sports as a new hobby, and finding a fantastic partner and relationship that brings her great joy.

Alex loves giving back to the community through her work with Stargardt’s Connected. Among other things, she supports children and young people and their families by leading tailored Zoom sessions on living with Stargardt’s, making a huge difference in people’s lives.

In the future, Alex hopes to complete her dissertation on sight loss in schools and the support, strategies, and adaptations that can be put in place for children and young people with sight loss.

Alex’s advice: “I have learned since being diagnosed with Stargardt’s that we are often more resilient then we give ourselves credit for, and you never know what you can achieve until you try it.”

PD: a lovely photo of Alex smiling wearing a white and brown framed glasses.

#StargardtsConnected #StargardtsStar #Community #Star
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We are absolutely delighted to announce our Stargardt’s Star for August: the incredible Alex Miles.

Alex was diagnosed with Stargardt’s during the COVID pandemic after she and her family noticed her vision was changing. She started sitting closer and closer to her laptop while studying at home. Alex was just 15 years old and due to start Year 11 the Monday after her diagnosis.

It was a huge shock, but in true Alex style, she didn’t let it stop her. She completed her A-Levels with excellent grades, went on to university, and trained to become a primary school teacher. This helped Alex feel fulfilled, happy, and independent, completing teaching placements, enjoying contact sports as a new hobby, and finding a fantastic partner and relationship that brings her great joy.

Alex loves giving back to the community through her work with Stargardt’s Connected. Among other things, she supports children and young people and their families by leading tailored Zoom sessions on living with Stargardt’s, making a huge difference in people’s lives.

In the future, Alex hopes to complete her dissertation on sight loss in schools and the support, strategies, and adaptations that can be put in place for children and young people with sight loss. 

Alex’s advice: “I have learned since being diagnosed with Stargardt’s that we are often more resilient then we give ourselves credit for, and you never know what you can achieve until you try it.”

PD: a lovely photo of Alex smiling wearing a white and brown framed glasses. 

#StargardtsConnected #StargardtsStar #Community #Star
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Stargardt's Connected
1 day ago
Stargardt's Connected

Don’t forget to RSVP 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 (swipe the photo for a map)

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].

PD1: a poster for our next annual Picnic in the Park on August 10th. The poster includes a photo from the last picnic with all the smiling attendees.

PD2: a map of the area of Hyde Park where the Picnic in the Park will take place.

#StargardtsConnected #PicnicInThePark #HydePark #Community
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Don’t forget to RSVP 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 (swipe the photo for a map) 

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. 

PD1: a poster for our next annual Picnic in the Park on August 10th. The poster includes a photo from the last picnic with all the smiling attendees. 

PD2: a map of the area of Hyde Park where the Picnic in the Park will take place. 

#StargardtsConnected #PicnicInThePark #HydePark #CommunityImage attachment
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Stargardt's Connected
2 weeks ago
Stargardt's Connected

We were delighted to have Dr. Alekseev, a Principal Investigator for the Belite Bio DRAGON II study at Duke University Hospital (Duke Eye Center) join our Community Zoom session on Saturday to share recent research updates on Stargardt’s Disease and providing an update on the DRAGON II study clinical trials.

You can now watch it too on our YouTube channel. Here is the link: www.youtube.com/watch?v=6itH4lDyyZY

For more information you can contact Belite Bio at clinicaltrials.gov. Here is the link: clinicaltrials.gov/study/NCT05428735

PD: a poster with a yellow background and black writing announcing that the Belite Bio Zoom recording is now available on YouTube.

#Stargardts #StargardtsConnected #Community #ClinicalTrials
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We were delighted to have Dr. Alekseev, a Principal Investigator for the Belite Bio DRAGON II study at Duke University Hospital (Duke Eye Center) join our Community Zoom session on Saturday to share recent research updates on Stargardt’s Disease and providing an update on the DRAGON II study clinical trials. 

You can now watch it too on our YouTube channel. Here is the link: https://www.youtube.com/watch?v=6itH4lDyyZY

For more information you can contact Belite Bio at clinicaltrials.gov. Here is the link: https://clinicaltrials.gov/study/NCT05428735

PD: a poster with a yellow background and black writing announcing that the Belite Bio Zoom recording is now available on YouTube. 

#Stargardts #StargardtsConnected #Community #ClinicalTrials
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  • likes love 13
  • Shares: 3
  • Comments: 0

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