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UPDATE ON UK APPROVAL OF GENE THERAPY - Click here to view this entry

UPDATE ON UK APPROVAL OF GENE THERAPY

Sat Jul 10 2021
NICE unfortunately leans towards a ‘NO’ for the treatment of Metachromatic Leukodystrophy (MLD).
NICE (National Institute of Clinical Excellence) the drug decision making body have publicly released their interim decision today (9 July 2021) not to recommend OTL-200 (Libmeldy), the treatment for individuals suffering from both, late infantile and early juvenile Metachromatic Leuko....
Brilliant News for Ava - Click here to view this entry

Brilliant News for Ava

Sun Sep 6 2020
FANTASTIC news just received that the Local Authority and NHS have agreed to jointly fund this amazing 'Innowalk' machine for Ava! Earlier this year Ava outgrew 3 separate pieces of equipment: a standing frame, walking frame and movement trainer. Further to a successful trial of this machine in February, the excellent staff at 'Made for Movement' have been generous enough to lo....
CALLING ALL UK MLD FAMILIES - Click here to view this entry

CALLING ALL UK MLD FAMILIES

Sat Aug 29 2020
ArchAngel has joined forces with MLD Support UK and The MPS Society to support of the approval of Gene Therapy for MLD for use by NHS England. As part of the formal assessment process conducted by the National Institute for Health & Care Excellence 'NICE', we need to demonstrate the devastating effects of this disease on patients and their families. The survey below will give us vita....
THANK YOU Downe House - Click here to view this entry

THANK YOU Downe House

Fri Jul 17 2020
Just before the Covid-19 lockdown Ava's sister Angelina and her cousin Milly organised a 'Mufti Day' in aid of ArchAngel at Angelina's school Downe House. In addition to selling merchandise, they also held a raffle and hosted a movie night. I am delighted to report that we have just received the final total and funds from the bursar - they raised a staggering £2492.46! En....
COVID-19 Shielding Update - Click here to view this entry

COVID-19 Shielding Update

Tue Jun 23 2020
With the risk of catching coronavirus steadily decreasing, the UK Government yesterday announced changes to the future of the shielding programme. From 6 July those shielding will be able to meet outdoors, in groups of up to six people from outside their household, with social distancing: If you live alone (or are a lone adult with dependent children under 18), you will be able to form a support ....
Super School - Click here to view this entry

Super School

Fri Jun 19 2020
Never a dull moment at Ava's school. Today she met the Head Teachers animals, including a chameleon! Whilst home and online schooling has been a challenge for many, we have been blessed to have an incredible team who have continued to give Ava 1:1 tuition, story time, special visitors and catch-ups with friends. Thank you all for such dedication 💖
Covid-19 Information - Click here to view this entry

Covid-19 Information

Fri Apr 17 2020
Genetic Alliance UK (of which ArchAngel is a member) have created this extremely useful hub of resources and information for anyone with a rare disease during the Covid-19 pandemic. [link]
Happy 6th Re-Birthday Ava - Click here to view this entry

Happy 6th Re-Birthday Ava

Sat Mar 28 2020
Happy RE-birthday Ava! Today is the 6th anniversary of Ava receiving her life-changing new DNA. Never have we been more grateful to have this ray of sunshine safe and well. Tomorrow we would have been flying to Milan for Ava's follow-up checks, now postponed due to the Covid-19 crisis. Our thoughts and prayers are with all of the remarkable medics there who not only made Ava's second cha....
Happy Home-made Mother's Day - Click here to view this entry

Happy Home-made Mother's Day

Mon Mar 23 2020
We have been in self-imposed isolation as a precautionary measure for Ava since 12th March. We have done twice daily video calls with school and Ava has had over 2 hours of 1:1 lessons every day, which have worked brilliantly. Angelina is home from boarding school and Richard is working from home. So far so good. Today Ava received an official letter from the NHS stating "you are at risk of s....
Coronavirus concern - Click here to view this entry

Coronavirus concern

Thu Mar 12 2020
Whilst we continue to have good press coverage of our NBS campaign, the news is now increasingly dominated by Coronavirus. It is particularly worrying to hear about the huge increase in cases in Italy and the tragically high number of deaths there. Last night I spoke with Ava's neurologist in Milan, as we are due there at the end of the month for Ava's 6 year post-transplant follow-up. U....

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