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Stargardt's Connected
1 day ago

Our incredible CEO Bhavna Tailor was nominated for the BBC1 The One Show One Big Thank You which aired tonight at 7pm.

A special treat was organised with the BBC Saturday Kitchen Live team where they surprised her with The One Show One Big Thank You to celebrate all the amazing work she has done and continues to do through Stargardt’s Connected.

We would like to say a big thank you to @bbctheoneshow and @saturday.kitchen team for arranging the incredible surprise for Bhavna and helping to shine a light on Stargardt’s and Stargardt’s Connected.

If you would like to donate to the charity to help us keep raising awareness, giving support and funding research click here:
stargardtsconnected.org.uk/donate/

You also rewatch the episode here: www.bbc.co.uk/iplayer/episode/m002mdzv

PD: a photo of Bhavna and her family with Matt Tebbutt tasting the One Big Thank You pies at the Saturday Kitchen studio after she received her One Big Thank You.

@bbctheoneshow
@saturday.kitchen
@matt.tebutt
@knackeredmother
@michaelahomeeconomist
@amandacactus
@pizzapilgrims
@philkoury
@missminifer
@misterosman
@onetribetv
@rarebeacon
@ambitionbroxbourne

#StargardtsConnected #BBCTheOneShow
#SaturdayKitchenLive
#OneBigThankYou
#Stargardt #RaisingAwareness #GivingSupport
#SeekingACure
#InheritedRetinalDystrophy
#RareDisease
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Our incredible CEO B
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Stargardt's Connected
2 days ago

We had a busy but brilliant 2 days at #SightVillage London where we exhibited with a charity stand. On Tuesday we were delighted to invite Gianluca and Oscar, representatives from Meta RayBan to join us at our seminar session where they spoke about #MetaRayBan glasses and their functionality. They joined us at our stand after where people had the opportunity to try and demo the glasses. We would like to thank Oscar and Gianluca for their time and support and joining us for a really informative session.

Thank you to those who came and visited our stand to find out more about what we offer. It was also a great opportunity to network with other organisations doing amazing things for the VI community.

@raybanmeta
@rayban
@qacofficial

PD1: a photo of Rosie, Ethan, Bhavna, Gianluca and Oscar at the Stargardt’s Connected stand.

PD2: a photo of Bhavna and Rea at the Stargardt’s Connected stand wearing yellow Stargardt’s Connected t-shirts.

#SightVillage #QAC #Meta #RayBan #MetaRayBan #StargardtsConnected
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We had a busy but brImage attachment
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Stargardt's Connected
2 weeks ago

For our final day of Trustee celebrations, we would like to shine a light on Louise.

With over 25 years of experience in clinical research, and the last decade focused on rare diseases, Louise brings a wealth of scientific insight to the Stargardt’s Connected Board.

Here’s some what Louise had to say:

Why Louise chose the role: “Most of my work is office-based, so I don’t often get to interact with participants on the trials I work with. Last year I joined the Stargardt’s Connected Conference and really enjoyed meeting members of the community and talking about the clinical trials process. Medical research in Stargardt’s is really exciting at the moment, and it’s so important that the community understands what opportunities might become available and what it means to take part in trials. I found the conference really inspiring, and when the team asked me to be more involved, I jumped at the chance! I hope I can bring my experience in clinical research to help Stargardt’s Connected navigate these changes and push the science forward.”

Louise’s favourite thing about being a Trustee: “The people I work with. It’s been great to get to know the other Trustees and members of the community. Seeing how everyone shares experiences and supports each other is truly special.”

Fun fact: Every Monday is choir night! Louise sings in a women’s choir, the perfect way to unwind, de-stress, and focus on the music.

Thank you, Louise, for your expertise, enthusiasm, and for helping us bridge the gap between research and our community.

PD1: a photo of Louise smiling and wearing a green shirt
PD2: Louise with her choir all in black robes with yellow and blue umbrellas
PD3: a photo of Louise wearing a white shirt and stripy blue and white jeans

#TrusteesWeek #StargardtsConnected #ThankYouTrustees #CharityTrustees #ClinicalResearch
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For our final day ofImage attachmentImage attachment
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With thanks to

fight-for-sight 400
lottery community fund 400
powell family foundation 400
clothworkers_foundation 400
jeans for genes 400

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UK eye genetic group 400
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genetic alliance 400

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