Blog
RSS FeedPosted by Michael Wonder on 10 Aug 2020
B.C. family nearing finish in race to raise $2.8 million to treat baby's rare disease
8 August 2020 - Parents hope funds will pay for expensive therapy not approved in Canada for type 1 spinal muscular ...
Posted by Michael Wonder on 26 Jul 2020
'I need something to move forward,' says Edmonton mom waiting for approval for son's life saving treatment
24 July 2020 - The family of a little boy in need of a $3 million treatment says they have ...
Posted by Michael Wonder on 18 Jul 2020
'Heartbreaking': Alberta families describe waiting for life-changing drug to be made available in Canada
17 July 2020 - More families are hoping a one-time treatment option for a rare condition will be made available ...
Posted by Michael Wonder on 05 Jul 2020
Clock ticking on Edmonton family's hope for $2.8 million drug treatment for toddler son
3 July 2020 - Family hoping Alberta Health will pay for new drug that must be administered by mid-July. ...
Posted by Michael Wonder on 01 Jul 2020
Life-changing drug remains unfunded
1 July 2020 - Knowing his body is slowly deteriorating is ‘‘the scariest feeling ever’’. ...
Posted by Michael Wonder on 24 Jun 2020
Germany first in EU to get Novartis’ SMA gene therapy, costing almost 2 million euros
24 June 2020 - Novartis is set to launch its one-off gene therapy Zolgensma for the ultra-rare muscle-wasting disease spinal ...
Posted by Michael Wonder on 15 Jun 2020
Teen with spinal muscular atrophy campaigns for wonder drug to survive
15 June 2020 - Taylor Fincham is one of 35 Kiwi children who suffer from spinal muscular atrophy. ...
Posted by Michael Wonder on 10 Jun 2020
Hawke's Bay mum's heartbreak as PHARMAC refuses spinal muscular atrophy drug for her two kids
9 June 2020 - Skylah-Rose Shaw 8 and her brother Zayden Shaw 10 suffer from spinal muscular atrophy a disease that ...
Posted by Michael Wonder on 20 May 2020
B.C. teen with rare disease wins fight to receive costly drug from province
19 May 2020 - Health ministry won't explain change of heart in granting Miles Ambridge treatment for spinal muscular atrophy. ...
Posted by Michael Wonder on 03 May 2020
'New Zealand doesn't have help juice' - PHARMAC's decision leaves family stuck abroad
3 May 2020 - Kristie Yeoman says returning home would likely mean death for her daughter. ...
Posted by Michael Wonder on 28 Apr 2020
Spinraza could give teen a longer life, but Government says it's too expensive
28 April 2020 - A Greymouth father is battling for PHARMAC funding for a drug he hopes can help his ...
Posted by Michael Wonder on 24 Apr 2020
PHARMAC won't fund drug Spinraza to help children with spinal muscular atrophy
24 April 2020 - The parents of babies with a rare and debilitating condition will have to wait longer for ...
Posted by Michael Wonder on 22 Feb 2020
Health ministers condemn Novartis lottery for Zolgensma, the world’s most expensive drug
12 February 2020 - Novartis has held the first draw to choose four babies who will receive its one-shot treatment ...
Posted by Michael Wonder on 06 Feb 2020
Call to reduce ‘scary’ gene therapy costs
28 November 2019 - Health care funders have been urged to overcome the “scary” cost of emerging gene therapies that ...
Posted by Michael Wonder on 31 Jan 2020
When a lottery 'wins' sick babies life-saving drugs
30 January 2020 - Eva was diagnosed with spinal muscular atrophy, a motor neuron disease, just a few weeks after ...