If you've only got a few seconds I'll cut to the chase: My amazing friend Lucy has FOP. She is wonderful. FOP is horrible. We need to find a cure, and the NHS doesn't fund that. You give money. Once we have reached £1500 - I'll shave my head on Facebook live. If you can't give (times are tough for some, I know) make sure to share on social media!
Why I'm raising money for FOP Friends?
If you've got a bit more time, here is the full story. This is my beautiful friend Lucy. She can tell you as much detail about physics as Bowie in the same breath. You could mistake her for the lead of a badass rock band. She's an amazing friend, sister, auntie, and light to everyone she comes across.
She is all of this while living with FOP, a rare genetic disease that causes the bone to form in muscles, tendons, and other tissue. Once the bone grows it locks into place and restricts movement making it quite a debilitating and painful condition to live with. There is currently no treatment or cure, but FOP Friends is working to change all that and that is where you and I come in!
What will my money go to?
Research into FOP in the UK receives no NHS or government funding. The FOP research team at the University of Oxford, led by Professor Alex Bullock, is funded solely by FOP Friends. Without funding from FOP Friends, the research team would not be able to continue in its current form.
Research into rare disease such as FOP helps scientists understand more common medical conditions, which could, in turn, advance the treatment for other diseases. Your support for FOP Friends could further understanding of osteoporosis, atherosclerosis, joint replacements, heart disease, heterotopic ossification following military injuries or surgery, chronic anaemia, sporting injuries, and burns.
"Cool, cool, cool. But I just want to see Betsy shave her head..."
I will do it. The day that we meet our £1500 goal I will send all backers and everyone who encouraged others to donate an invite to watch my partner shave my head live on Facebook. Will I cry? Will I rejoice? Will I immediately hit the Natalie Portman glamour factor? There is only one way to find out!
My birthday is coming up, don't get me anything, just donate. Enough now, go donate and/or share with your friends.