I can sometimes be a bit of a geek, so please bear with me while I briefly indulge my love of numbers …
I often get texts, messages etc in response to things I have posted …too many to count, but they all mean a lot to me 😘
As you can see, we are almost a quarter of the way there with our fundraising campaign. Never in my wildest dreams did I think we would do this well …thank you to everyone who has contributed with donations, shares or by taking on challenges.
We have a few other events in the pipeline but I am very aware that we are unlikely to achieve the full amount by the date of my treatment. Ideally I would like to pay early so as to avoid the crashing of the value of the pound when we leave the EU. Next week I plan to begin looking into options on borrowing to pay the rest. I am not very money savvy, so if anyone has any advice or guidance you could give me on that, please get in touch. Our plan would be to continue to fundraise and hopefully repay the loan by the end of the year.
I also want to share this YouTube video with you …
Aaron Boster is a well regarded American neuro immunologist. In this video, he makes the argument for a therapy deescalation model, where a patient gets the most potent therapy, as early as possible in the disease course. He describes induction therapies as the best option and includes HSCT (Hematopoietic Stem Cell Transplant) as one of these. At present, patients are initially offered the least effective treatments, with an escalation to more effective treatments if the first drug fails. He also makes some interesting comments about how a patient’s age can the impact the efficacy of DMD’s.
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