The 27th of August 2013 is a Wednesday.
I have have gotten my very first package of Imukin from the pharmacy. I’ve hung up the phone call with doctor Harald for the last instructions. We are ready for the first shot.
I lie down on the sofa with pillows under my knee. I don’t know how this injection will feel like so I make sure I’m comfortable. My father, Morten and my mum is in the room. My mum is nervous. She will do the injection. As an experienced nurse she is never nervous before an injection, but it’s different with us kids. She always gets nervous treating us even now that we are not kids anymore.. She never shows it. She is the calmest person on the ouside as she fixes the syringe and desinfect my thigh.
We have to wait for two Skype calls. My sister in another city in Norway, and the other sister in Washington DC. When they are both connected my mum makes the injection with 100 micrograms of interferon gamma, and my future is going to get so much better.
I posted about this in October 2013. I waited untill I was sure about the effects that I felt. This blog post created quite a stirr. People got excited,but many was also negative accusing me for benefiting financially on this drug, talking loud about it being placebo, how I was spreading false hope.
I’m just happy that my story could help others getting better from FA also, and I will keep talking about it as long as it has an effect on me.
This day means so much to me. When I woke up today I said “Happy Anniversary” to myself and took a moment to think about the impack this drug have had on me for the last 6 years.
I just want to express my warmest gratitude to my favorite Professor of all times:
Roberto Testi
…and to all your team at Fratagene. Thank you from the bottom of my heart for donating your mind power and curiousness to find a cure for Friedreichs Ataxia!
A big heartfelt Thank You to Harald, Morten and my family for supporting this journey.
If you have FA or someone you care about has FA, let’s take a moment to think about all the researchers out there who is working to find treatments for FA. The cure is not going to suddenly spawn out of nowhere. Somebody is working hard for it. Researchers with all their teams, people and organizations working relentlessly to collect money and create awareness…
Thank you! We love you!
Earlier this year I read these lovely sentences said by Ron Bartek in Fara;
Three highly advanced therapy trials will start this year! Including gene therapy. And there is much much more coming up in Europe, Australia, America… in the near future.
Now things are getting really exciting! ❤
This is where we can help! You and me 🙂
The registry for FA with the most registered patients is The FA Global Patient Registry.
“… it is more and more important that we know how to contact FA families around the world and keep them informed as to which clinical trials they might be eligible for and how to contact the clinical site if they are interested in participating.” – Ron Bartek, Fara
At this moment it’s 3747 people registered. However, there are about 22 000 people with FA world wide.
Does that mean that 18 313 people with FA are not interested in finding a cure? I doubt it!
Let’s do our part! We must spread the word and get more people on the list. Check with everyone you know with FA if they are registered. Ask if they can do the same to their friends…
If I were a decision maker in a pharmaceutical company and was asked to invest in research, I would rather choose the diagnosis who had 22 000 people on the list than the one with 3687 on the list… So there is another good reason to recruit people for The FA Global Patient Registry. We would get even more attractive for those who want to make money. Let’s make FA so attractive they can’t resist us 🙂
Here is the link to the registry; https://curefa.net/registry
If you cant register for some reason; perhaps you don’t have a computer, don’t find your country on the list, don’t understand english…. Someone will help you. Just put a comment below this post 🙂
Here is more about Imukin and all the patient experiences I was able to collect so far; https://fafysio.wordpress.com/2019/07/22/status-imukin-may-2019/
Thanks for reading 🙂
I am so so so honored and blessed and grateful to have such a strong fighter on the same team as me. Your drive and smart mind are definitely making FA “so attractive they can’t resist us!” Thank you immensely to all the researchers, including Gunnhild Lystad 💜 You bring so much hope