Butterfly Room Part
Tonight is the final stretch! I will be uploading my polished art on InZoi and using patterns as well as paintings. This room is dedicated to the butterfly 🦋 children, their families, as well as those living with EB (Epidermolysis Bullosa). #art #inzoibuild #inzoi #ebawareness
Tonight is the final stretch! I will be uploading my polished art on InZoi and using patterns as well as paintings. This room is dedicated to the butterfly 🦋 children, their families, as well as those living with EB (Epidermolysis Bullosa). #art #inzoibuild #inzoi #ebawareness
May 15, 2025 at 8:58 PM
Butterfly Room Part
Tonight is the final stretch! I will be uploading my polished art on InZoi and using patterns as well as paintings. This room is dedicated to the butterfly 🦋 children, their families, as well as those living with EB (Epidermolysis Bullosa). #art #inzoibuild #inzoi #ebawareness
Tonight is the final stretch! I will be uploading my polished art on InZoi and using patterns as well as paintings. This room is dedicated to the butterfly 🦋 children, their families, as well as those living with EB (Epidermolysis Bullosa). #art #inzoibuild #inzoi #ebawareness
🔬 We’re proud to be one of 89 charities awarded a share of @nihr.bsky.social's £37m investment, supporting 800+ early-career researchers. 🩵
Find out more: https://bit.ly/4aft801
#DEBRAUK #EBResearch #EBAwareness #StopThePain
Find out more: https://bit.ly/4aft801
#DEBRAUK #EBResearch #EBAwareness #StopThePain
June 8, 2026 at 3:26 PM
🔬 We’re proud to be one of 89 charities awarded a share of @nihr.bsky.social's £37m investment, supporting 800+ early-career researchers. 🩵
Find out more: https://bit.ly/4aft801
#DEBRAUK #EBResearch #EBAwareness #StopThePain
Find out more: https://bit.ly/4aft801
#DEBRAUK #EBResearch #EBAwareness #StopThePain
📍 Last night, we were proud to host a special reception at Scottish Parliament to share the latest global EB research priorities and highlight the urgent need for improved access to specialist EB healthcare in Scotland.
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
November 13, 2025 at 4:45 PM
📍 Last night, we were proud to host a special reception at Scottish Parliament to share the latest global EB research priorities and highlight the urgent need for improved access to specialist EB healthcare in Scotland.
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
📖 Read the full story: https://bit.ly/47TdZQd
#EBawareness #DEBRAUK
Update for tonight, streaming and catching up with art works for my series Cho No Senshi. It will just be on TikTok Live tonight. #artist #bluskyart #updates #fyp #art #tiktok #livestream #artstreamer #ebawareness
www.tiktok.com/live/event/7...
www.tiktok.com/live/event/7...
July 18, 2025 at 12:33 AM
Update for tonight, streaming and catching up with art works for my series Cho No Senshi. It will just be on TikTok Live tonight. #artist #bluskyart #updates #fyp #art #tiktok #livestream #artstreamer #ebawareness
www.tiktok.com/live/event/7...
www.tiktok.com/live/event/7...
🔬 New research to protect sight in people living with JEB
We’re delighted to be funding a 4‑year research study focused on protecting against sight loss in patients with JEB, in partnership with @fightforsight.bsky.social
Read more: https://bit.ly/49107Vc
#DEBRAUK #EBResearch #EBAwareness #JEB
We’re delighted to be funding a 4‑year research study focused on protecting against sight loss in patients with JEB, in partnership with @fightforsight.bsky.social
Read more: https://bit.ly/49107Vc
#DEBRAUK #EBResearch #EBAwareness #JEB
April 22, 2026 at 1:53 PM
🔬 New research to protect sight in people living with JEB
We’re delighted to be funding a 4‑year research study focused on protecting against sight loss in patients with JEB, in partnership with @fightforsight.bsky.social
Read more: https://bit.ly/49107Vc
#DEBRAUK #EBResearch #EBAwareness #JEB
We’re delighted to be funding a 4‑year research study focused on protecting against sight loss in patients with JEB, in partnership with @fightforsight.bsky.social
Read more: https://bit.ly/49107Vc
#DEBRAUK #EBResearch #EBAwareness #JEB
Today, former Chair, Jim Irvine MBE, attended his investiture at Holyrood Palace.
This award recognises Jim’s incredible 25 years of service to people living with epidermolysis bullosa (EB). We’re hugely grateful for everything Jim has done for the community. 💙
#DEBRAUK #EBAwareness #StopThePain
This award recognises Jim’s incredible 25 years of service to people living with epidermolysis bullosa (EB). We’re hugely grateful for everything Jim has done for the community. 💙
#DEBRAUK #EBAwareness #StopThePain
June 30, 2026 at 3:38 PM
Today, former Chair, Jim Irvine MBE, attended his investiture at Holyrood Palace.
This award recognises Jim’s incredible 25 years of service to people living with epidermolysis bullosa (EB). We’re hugely grateful for everything Jim has done for the community. 💙
#DEBRAUK #EBAwareness #StopThePain
This award recognises Jim’s incredible 25 years of service to people living with epidermolysis bullosa (EB). We’re hugely grateful for everything Jim has done for the community. 💙
#DEBRAUK #EBAwareness #StopThePain
DEBRA UK and @greatormondst.bsky.social have launched a new funding opportunity to support research into childhood EB.
Grants up to £350k available for UK researchers.
📅 Deadline: 16th July 2026
🔗 Find out more: https://bit.ly/43t0PHR
#EBAwareness #DEBRAUK #StopThePain #RareDisease
Grants up to £350k available for UK researchers.
📅 Deadline: 16th July 2026
🔗 Find out more: https://bit.ly/43t0PHR
#EBAwareness #DEBRAUK #StopThePain #RareDisease
June 13, 2026 at 5:08 PM
DEBRA UK and @greatormondst.bsky.social have launched a new funding opportunity to support research into childhood EB.
Grants up to £350k available for UK researchers.
📅 Deadline: 16th July 2026
🔗 Find out more: https://bit.ly/43t0PHR
#EBAwareness #DEBRAUK #StopThePain #RareDisease
Grants up to £350k available for UK researchers.
📅 Deadline: 16th July 2026
🔗 Find out more: https://bit.ly/43t0PHR
#EBAwareness #DEBRAUK #StopThePain #RareDisease
At DEBRA, everything starts with our members 💙
We have now launched our 2027–2029 strategic plan - shaped by member insight, research, and community priorities.
See what’s ahead: https://www.debra.org.uk/debras-new-2027-2029-strategic-plan/
#DEBRAUK #StopThePain #EBAwareness
We have now launched our 2027–2029 strategic plan - shaped by member insight, research, and community priorities.
See what’s ahead: https://www.debra.org.uk/debras-new-2027-2029-strategic-plan/
#DEBRAUK #StopThePain #EBAwareness
June 8, 2026 at 5:56 PM
At DEBRA, everything starts with our members 💙
We have now launched our 2027–2029 strategic plan - shaped by member insight, research, and community priorities.
See what’s ahead: https://www.debra.org.uk/debras-new-2027-2029-strategic-plan/
#DEBRAUK #StopThePain #EBAwareness
We have now launched our 2027–2029 strategic plan - shaped by member insight, research, and community priorities.
See what’s ahead: https://www.debra.org.uk/debras-new-2027-2029-strategic-plan/
#DEBRAUK #StopThePain #EBAwareness
We’re delighted to appoint former Chair Jim Irvine as DEBRA’s Honorary Life Patron 💙
Thank you, Jim, for more than 25 years of dedication to the EB community and ongoing support as a lifelong ambassador.
🔗 Read more: https://bit.ly/4aB0jLG
#DEBRAUK #StopThePain #EBAwareness
Thank you, Jim, for more than 25 years of dedication to the EB community and ongoing support as a lifelong ambassador.
🔗 Read more: https://bit.ly/4aB0jLG
#DEBRAUK #StopThePain #EBAwareness
June 10, 2026 at 1:48 PM
We’re delighted to appoint former Chair Jim Irvine as DEBRA’s Honorary Life Patron 💙
Thank you, Jim, for more than 25 years of dedication to the EB community and ongoing support as a lifelong ambassador.
🔗 Read more: https://bit.ly/4aB0jLG
#DEBRAUK #StopThePain #EBAwareness
Thank you, Jim, for more than 25 years of dedication to the EB community and ongoing support as a lifelong ambassador.
🔗 Read more: https://bit.ly/4aB0jLG
#DEBRAUK #StopThePain #EBAwareness
Designed by Sophia who lives with EB, these beautiful limited edition tote bags are available now at Mace stores. Sophia is teaming up with Mace and Johnny Sexton to raise awareness of EB.
Get yours now! All proceeds go to supporting people impacted by EB. 🦋 #ButterflySkin #EBAwareness
Get yours now! All proceeds go to supporting people impacted by EB. 🦋 #ButterflySkin #EBAwareness
May 29, 2025 at 12:34 PM
Designed by Sophia who lives with EB, these beautiful limited edition tote bags are available now at Mace stores. Sophia is teaming up with Mace and Johnny Sexton to raise awareness of EB.
Get yours now! All proceeds go to supporting people impacted by EB. 🦋 #ButterflySkin #EBAwareness
Get yours now! All proceeds go to supporting people impacted by EB. 🦋 #ButterflySkin #EBAwareness
Our new survey results highlight serious issues with EB prescription access - including missing or substituted items, which can increase pain & risk of infection.
Read more: https://bit.ly/4omF1rb
We’re calling for clearer guidance & better support to protect patient care 💙
#DEBRAUK #EBAwareness
Read more: https://bit.ly/4omF1rb
We’re calling for clearer guidance & better support to protect patient care 💙
#DEBRAUK #EBAwareness
EB patients being failed by prescription changes
A new patient survey has revealed multiple challenges concerning prescription fulfilment for EB patients.
www.debra.org.uk
June 4, 2026 at 5:11 PM
Our new survey results highlight serious issues with EB prescription access - including missing or substituted items, which can increase pain & risk of infection.
Read more: https://bit.ly/4omF1rb
We’re calling for clearer guidance & better support to protect patient care 💙
#DEBRAUK #EBAwareness
Read more: https://bit.ly/4omF1rb
We’re calling for clearer guidance & better support to protect patient care 💙
#DEBRAUK #EBAwareness
Schedule is up for this week. Trying to get my presence known and out there. #artist #networking #bluskyart #livestream #TikTok #nimotv #art #followme #gaming #ts4 #pridemonth2025 #community #goals #ebawareness #mentalhealthawareness #love #families #care
June 16, 2025 at 5:05 PM
Schedule is up for this week. Trying to get my presence known and out there. #artist #networking #bluskyart #livestream #TikTok #nimotv #art #followme #gaming #ts4 #pridemonth2025 #community #goals #ebawareness #mentalhealthawareness #love #families #care
🎉 DEBRA UK has successfully passed the AMRC Expert Review Audit, confirming our research funding processes meet the highest standards of transparency and fairness.
Find out more: 🔗 https://bit.ly/3SUgePz
#DEBRAUK #EBAwareness #StopThePain
Find out more: 🔗 https://bit.ly/3SUgePz
#DEBRAUK #EBAwareness #StopThePain
DEBRA UK Achieves AMRC Audit Success, Reinforcing Excellence in Research Funding
We are proud to announce the successful outcome of the Association of Medical Research Charities (AMRC) Expert Review Audit 2025 into our research grant award process at DEBRA UK
bit.ly
July 21, 2026 at 1:02 PM
🎉 DEBRA UK has successfully passed the AMRC Expert Review Audit, confirming our research funding processes meet the highest standards of transparency and fairness.
Find out more: 🔗 https://bit.ly/3SUgePz
#DEBRAUK #EBAwareness #StopThePain
Find out more: 🔗 https://bit.ly/3SUgePz
#DEBRAUK #EBAwareness #StopThePain
Our new Global EB Taskforce outcomes report is now live.
A 10-year roadmap focused on better treatments, stronger care, and real impact for people living with EB - driven by global collaboration.
Read more 👉 https://bit.ly/4vCXamB
#DEBRAUK #EBAwareness
A 10-year roadmap focused on better treatments, stronger care, and real impact for people living with EB - driven by global collaboration.
Read more 👉 https://bit.ly/4vCXamB
#DEBRAUK #EBAwareness
DEBRA publishes new Global EB Taskforce outcomes report
The new Global EB Taskforce outcomes report sets out a clear 10-year roadmap to accelerate progress for people living with EB.
bit.ly
July 8, 2026 at 3:27 PM
Our new Global EB Taskforce outcomes report is now live.
A 10-year roadmap focused on better treatments, stronger care, and real impact for people living with EB - driven by global collaboration.
Read more 👉 https://bit.ly/4vCXamB
#DEBRAUK #EBAwareness
A 10-year roadmap focused on better treatments, stronger care, and real impact for people living with EB - driven by global collaboration.
Read more 👉 https://bit.ly/4vCXamB
#DEBRAUK #EBAwareness
🎂 We are wishing our Royal Patron, HRH The Duchess of Edinburgh, a very happy birthday! 💜
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
January 20, 2026 at 10:40 AM
🎂 We are wishing our Royal Patron, HRH The Duchess of Edinburgh, a very happy birthday! 💜
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙
#DEBRAUK #EBAwareness
Streaming tonight at 8:30 PM EST. Show these families love and help spread awareness for EB! Follow me on my art journey, help me reach beyond borders. 💜Kiki
#artist #artstreamer #art #ebawareness #butterflychildren #butterflyskin #Tiktoklive #fypシ #family #friends
www.tiktok.com/live/event/7...
#artist #artstreamer #art #ebawareness #butterflychildren #butterflyskin #Tiktoklive #fypシ #family #friends
www.tiktok.com/live/event/7...
Butterfly🦋Series-蝶🦋戦士 - TikTok LIVE Events
0 viewers have registered for this event | Continuing the series, and spreading awareness about EB (epidermolysis bullosa).For these next few days I will be drawing as much as possible on stream.
www.tiktok.com
June 12, 2025 at 11:52 PM
Streaming tonight at 8:30 PM EST. Show these families love and help spread awareness for EB! Follow me on my art journey, help me reach beyond borders. 💜Kiki
#artist #artstreamer #art #ebawareness #butterflychildren #butterflyskin #Tiktoklive #fypシ #family #friends
www.tiktok.com/live/event/7...
#artist #artstreamer #art #ebawareness #butterflychildren #butterflyskin #Tiktoklive #fypシ #family #friends
www.tiktok.com/live/event/7...
Finally some good news! #debraUK #debra #butterflychildren #ebawareness #health #medical #children #fragileskin #butterflyskin
www.linkedin.com/posts/debra-...
www.linkedin.com/posts/debra-...
🌍 At the 78th World Health Assembly, skin disease was officially… | DEBRA UK
🌍 At the 78th World Health Assembly, skin disease was officially recognised as a global public health priority — a major step forward! 🙌
With 2+ billion people affected worldwide, this resolution by ...
www.linkedin.com
June 3, 2025 at 11:00 PM
Finally some good news! #debraUK #debra #butterflychildren #ebawareness #health #medical #children #fragileskin #butterflyskin
www.linkedin.com/posts/debra-...
www.linkedin.com/posts/debra-...
I’m live on TS4 today. I felt like the Inzoi room to support my friends didn’t reach the vision I wanted. It disappointed me but that art will still come on later.
#ts4 #ts4build #family #cute #artist #bluskyartist #gaming #butterflychildren #ebawareness #butterflies
www.tiktok.com/t/ZTjaR6CWx/
#ts4 #ts4build #family #cute #artist #bluskyartist #gaming #butterflychildren #ebawareness #butterflies
www.tiktok.com/t/ZTjaR6CWx/
Ki Empress (@kg.artist0991) is LIVE - TikTok LIVE
Dice Roll Butterfly 🦋 | Watch Ki Empress (@kg.artist0991)'s LIVE on TikTok and interact with others in real time.
www.tiktok.com
May 17, 2025 at 1:34 AM
I’m live on TS4 today. I felt like the Inzoi room to support my friends didn’t reach the vision I wanted. It disappointed me but that art will still come on later.
#ts4 #ts4build #family #cute #artist #bluskyartist #gaming #butterflychildren #ebawareness #butterflies
www.tiktok.com/t/ZTjaR6CWx/
#ts4 #ts4build #family #cute #artist #bluskyartist #gaming #butterflychildren #ebawareness #butterflies
www.tiktok.com/t/ZTjaR6CWx/
Spreading awareness for EB through art!
www.tiktok.com/live/event/7...
#Art #Artist #Digitalart #illustration#tiktoklive #ebawareness #epidermolysisbullosa #artstream #livestream #butterfly #butterflychildren #NimoTV #youtubechannel #wip #Liveevent
#bluskyart #bluskyartist #tumblrartist #niche
www.tiktok.com/live/event/7...
#Art #Artist #Digitalart #illustration#tiktoklive #ebawareness #epidermolysisbullosa #artstream #livestream #butterfly #butterflychildren #NimoTV #youtubechannel #wip #Liveevent
#bluskyart #bluskyartist #tumblrartist #niche
Butterfly 🦋 Series Cont. - TikTok LIVE Events
0 viewers have registered for this event | Keeping it going with the art and spreading awareness for EB. I am also working on some special gifts for our lovely medical families and friends.
www.tiktok.com
May 28, 2025 at 4:41 PM
Art for EB Awareness and Izoi design. Today I'll be streaming art and designing a butterfly room for Inzoi, dedicating the room to the little ones fighting EB. #EBawareness #butterflychildren #art #tiktoklive #tiktok #livestream
www.tiktok.com/live/event/7...
www.tiktok.com/live/event/7...
Hope in Art-EB Awareness - TikTok LIVE Events
0 viewers have registered for this event | Epidermolysis bullosa is a rare, inherited, condition that causes fragile, blistering skin. Usually showing up in infants or young children; some people not ...
www.tiktok.com
April 30, 2025 at 9:31 PM
Art for EB Awareness and Izoi design. Today I'll be streaming art and designing a butterfly room for Inzoi, dedicating the room to the little ones fighting EB. #EBawareness #butterflychildren #art #tiktoklive #tiktok #livestream
www.tiktok.com/live/event/7...
www.tiktok.com/live/event/7...
Now, why have I been saying “?Mystery?” this past week? Well today I will reveal it live. #bluskyartist #Art #bluskyart #nimotv #globalart #ebawareness #illustration #digitalart #magicalgirl #anime #otaku #butterflychildren #debra #cureEB #family #clipstudiopaint
www.tiktok.com/live/event/7...
www.tiktok.com/live/event/7...
Butterfly Series Mystery Reveal - TikTok LIVE Events
0 viewers have registered for this event | Now, why have I been saying “?Mystery?” this past week? Well today I will reveal it live. My reason for asking for favorite colors and the work in progress!
www.tiktok.com
June 3, 2025 at 6:24 PM
Now, why have I been saying “?Mystery?” this past week? Well today I will reveal it live. #bluskyartist #Art #bluskyart #nimotv #globalart #ebawareness #illustration #digitalart #magicalgirl #anime #otaku #butterflychildren #debra #cureEB #family #clipstudiopaint
www.tiktok.com/live/event/7...
www.tiktok.com/live/event/7...
"There is light at the end of the tunnel." 🩵
This morning, Graeme and Isla spoke on BBC Breakfast about why awareness and research funding for EB matter so much.
Watch the full interview now: https://bit.ly/4hzwYVW
#DEBRAUK #StopThePain #EBAwareness
This morning, Graeme and Isla spoke on BBC Breakfast about why awareness and research funding for EB matter so much.
Watch the full interview now: https://bit.ly/4hzwYVW
#DEBRAUK #StopThePain #EBAwareness
Graeme Souness completes new challenge | Isla shares the reality of butterfly skin | BBC Breakfast
YouTube video by DEBRA UK
www.youtube.com
September 18, 2026 at 12:16 PM
"There is light at the end of the tunnel." 🩵
This morning, Graeme and Isla spoke on BBC Breakfast about why awareness and research funding for EB matter so much.
Watch the full interview now: https://bit.ly/4hzwYVW
#DEBRAUK #StopThePain #EBAwareness
This morning, Graeme and Isla spoke on BBC Breakfast about why awareness and research funding for EB matter so much.
Watch the full interview now: https://bit.ly/4hzwYVW
#DEBRAUK #StopThePain #EBAwareness
When your diagnosis deserves an honest review 😅⭐
This Epidermolysis Bullosa tee is dark humor done right, perfect for Butterfly Children, caregivers, and anyone in the EB Community who copes with a laugh → sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior
This Epidermolysis Bullosa tee is dark humor done right, perfect for Butterfly Children, caregivers, and anyone in the EB Community who copes with a laugh → sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior
September 9, 2026 at 11:50 PM
When your diagnosis deserves an honest review 😅⭐
This Epidermolysis Bullosa tee is dark humor done right, perfect for Butterfly Children, caregivers, and anyone in the EB Community who copes with a laugh → sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior
This Epidermolysis Bullosa tee is dark humor done right, perfect for Butterfly Children, caregivers, and anyone in the EB Community who copes with a laugh → sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior
www.tiktok.com/t/ZP8navJJn/
This sweet little angel lost her battle. She was a joy to her family and will be missed more than words can ever express.
This sweet little angel lost her battle. She was a joy to her family and will be missed more than words can ever express.
Your kindness means the world to us🦋❤️ #EBawareness #fyp #foryoupage #babytok #darciesstory
TikTok video by Darcie’s Story🦋
www.tiktok.com
August 8, 2026 at 2:43 PM
www.tiktok.com/t/ZP8navJJn/
This sweet little angel lost her battle. She was a joy to her family and will be missed more than words can ever express.
This sweet little angel lost her battle. She was a joy to her family and will be missed more than words can ever express.
Wearing hope, strength, and courage on my sleeve today. Together we fight for a cure for Epidermolysis Bullosa — one shirt, one voice, one family at a time
sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior #ButterflySkin #RareDiseaseAwareness #TogetherWeFight
sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior #ButterflySkin #RareDiseaseAwareness #TogetherWeFight
July 31, 2026 at 8:15 PM
Wearing hope, strength, and courage on my sleeve today. Together we fight for a cure for Epidermolysis Bullosa — one shirt, one voice, one family at a time
sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior #ButterflySkin #RareDiseaseAwareness #TogetherWeFight
sleepingangeltreasures.com/products/epi...
#EpidermolysisBullosa #EBAwareness #EBWarrior #ButterflySkin #RareDiseaseAwareness #TogetherWeFight