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 89 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...
12 views0 comments
habcfoundationuk
Feb 81 min
BBC Interview Tubb4a Family
Oxford company working on drug to treat rare brain disease - BBC News
14 views0 comments
habcfoundationuk
May 10, 20231 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)
17 views0 comments
habcfoundationuk
May 16, 20222 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, 20221 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, 20211 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, 20211 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...
44 views0 comments
habcfoundationuk
Sep 25, 20211 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...
15 views0 comments
habcfoundationuk
Jul 16, 20211 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...
17 views0 comments
habcfoundationuk
Apr 10, 20211 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, 20211 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...
95 views0 comments
habcfoundationuk
Nov 18, 20201 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...
22 views0 comments
habcfoundationuk
Oct 6, 20201 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.
10 views0 comments
habcfoundationuk
Aug 17, 20201 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...
30 views0 comments
habcfoundationuk
Aug 11, 20201 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.....
49 views0 comments
habcfoundationuk
Aug 7, 20201 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, 20201 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, 20201 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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