Hello to you all,

An update is long overdue to you. I have good news, bad news, need your help again and would like to offer my most sincere gratitude for being part of Spinraza4all.

First of all, after much fighting and threats of legal action, my Spinraza application got approved in Scotland. This is a small but important success – not just personally, for others with SMA in Scotland. Precedent has been set and adults in Scotland should also be able to access Spinraza. I must add that my approval is conditional for 2 years [by which time I do hope better treatments are available!] and that means of delivery of the drug pose a particular risk to me as I have a fused spine. Nevertheless I am going forward with hope and caution.

It is a great step forward but I am also regaining my physical and mental energy spent on this for so long [19 months to be exact].

Earlier this year, I had a wake-up call regarding my health. I found out that my lung function was at 15% [instead of the 30% I had previously had]. This both scared me and forced me to rethink my life structure and how I look after my own health. It is for this reason I have been less active with the campaign the past few months – but no less committed to push forward and find a way.

I've realised I can't work on this campaign alone.

I am delighted to announce that Mira Budafoki, who I will fully introduce on our Facebook campaign page, has agreed to work on this campaign with me as Assistant Director.

It is with the help of Mira, and a few more other people, I will be building a team to branch out the campaign sustainably and win this fight. 

I am currently looking for people for the following roles, and would ask that you get in touch [on our Facebook page] and share this with your social network:

1.     Social Media Manager

2.     Website Designer

3.     Financial Manager

4.     Journalist [initially UK based, looking to branch out]

5.     Videographer[s] and Editors [preferably freelance in many locations as required]

The roles are currently unpaid – funding is tricky as we are directly challenging governments/organisations – therefore I ask that no one working on this does more than 10 hours maximum a week.

I know that with a strong team, Spinraza4all is a dream that will turn into a reality.

I started this campaign, alone in my bedroom, on a cold winter's night, after the deciding to do something about the guilt I felt after doing nothing and as a consequence going through the death of a friend. Something I can't turn back or change.

The campaign has grew very quickly.

Today, the petition has been translated into 9 languages, signed by just over 18000 in all five continents of the world.

I've been contacted by so many across the globe. All people interested in the campaign or accessing Spinraza.  Without your help, I can’t make the campaign reach its goal.

I’d like to get media attention but need many more signatures to make this happen, so please share this again and donate what you can [even £1 goes a long way] to make this petition go viral.  

I’m incredibly grateful for your support in this journey and that of my friends and family. We’re reaching a new era of advanced medical technology where we can help our society, but need the culture of medical treatment as human right to fully benefit from this. 

Here's to a future where no one has to fight for their human rights. 

With love and thanks, 

Kiana Kalantar-Hormozi