Addressing the Funding Crisis for Special Needs Education in the UK
Being a parent of a child suffering from Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum (H-ABC), a condition caused by...
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NEWS & EVENTS
habcfoundationuk
- Feb 8
- 9 min
Dan Williams interviewed for prestigious journal - Major International Clinical Trials feature showcases SynaptixBio story
ICT talks with Dan Williams from SynaptixBio about the rare genetic disease group of leukodystrophies, how they affect the white matter...
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habcfoundationuk
- Feb 8
- 1 min
BBC Interview Tubb4a Family
Oxford company working on drug to treat rare brain disease - BBC News
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habcfoundationuk
- May 10, 2023
- 1 min
Great news that Synapix Bio have secured £13.2m to fund clinical trials for H-ABC/Tubb4a!
Oxford biotech firm secures £13.2m to develop first treatment for rare, incurable, deadly disease. (synaptixbio.com)
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habcfoundationuk
- May 16, 2022
- 2 min
Virtual Reality for H-abc
In 2021, the H-ABC Foundation UK began working on two exciting projects involving Virtual Reality for H-ABC. IMAGINATION VR: IMAGINATION...
80 views0 comments
habcfoundationuk
- May 16, 2022
- 1 min
Another article about one of our H-abc kids!
Time running out for 'beautiful' Cotswold teen needing medical treatment for genetic condition - Gloucestershire Live
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habcfoundationuk
- Oct 28, 2021
- 1 min
NIH, FDA and 15 organisations join forces to increase effective gene therapies for rare diseases.
More exciting news for rare disease communities. The article below explains the new partnership to help improve and accelerate the...
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habcfoundationuk
- Oct 15, 2021
- 1 min
New Biotech, Synaptix, launched to develop treatment for Tubb4a H-abc!
Very exciting news for the H-abc community. Biotech Synaptix has launched and are working hard to develop ASO gene therapy for H-abc and...
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habcfoundationuk
- Sep 25, 2021
- 1 min
Darren Hardy the Machine!
The amazing Darren Hardy is at it again! This time he pulled a car (yes a car!!) for 50km! Darren is such an amazing supporter of H-abc...
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habcfoundationuk
- Jul 16, 2021
- 1 min
5 Marathons in 50 Hours video
Darren Hardy, who ran 5 marathons in 50 hours for H-abc Foundation UK, has produced a video about his challenge. Have a watch, its a...
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habcfoundationuk
- Apr 10, 2021
- 1 min
5 Marathons in 50 Hours!
Ex Solider Darren Hardy is running 5 marathons in 50 hours to raise money for H-abc Foundation UK after being inspired by Aggie, 12, who...
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habcfoundationuk
- Mar 5, 2021
- 1 min
H-abc family meeting the Queen of Spain!
One of our H-abc families had the privilege of meeting the Queen of Spain, here is what mum, Laura, had to say: On February 11, we had...
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habcfoundationuk
- Nov 18, 2020
- 1 min
BBC Breakfast news interviews H-abc families
3 of the H-abc children and their mum's were interviewed by BBC Breakfast to help raise awareness of the disease and the charity we have...
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habcfoundationuk
- Oct 6, 2020
- 1 min
ULF H-abc Conference presented by Dr Vanderver
ULF organised a Leukodystrophy conference this year and Dr Vanderver presented and update on H-abc, click below to view the presentation.
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habcfoundationuk
- Aug 17, 2020
- 1 min
Ben Fogle has given us his Twitter account for a week!
We have the amazing opportunity of having access to Ben's Twitter account to help publicise our charity. We will be tweeting videos and...
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habcfoundationuk
- Aug 11, 2020
- 1 min
News article in The Sun online!
The Sun Online published a great article about H-abc and how we are desperately trying to find a cure for our kids. have a read here.....
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habcfoundationuk
- Aug 7, 2020
- 1 min
We now have our Charity Commission number!
After lots of paperwork and waiting we now have our Charity Commission number! H-abc Foundation UK 1190390 is a charity registered in...
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Afaq Javed
- Jul 19, 2020
- 1 min
Our new Youtube video!
Some of our parents and US affiliated charity Foundation to Fight H-abc have produced this great Youtube video. It features some of our...
28 views0 comments
Afaq Javed
- Jul 19, 2020
- 1 min
Art Exhibition
£960 has been raised from a local art exhibition at the Exhibitionist in Ware, Hertfordshire.Thanks for everyone that came and made it...
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