Hi, my name is Danny and I have Motor Neurone Disease. My symptoms started back in 2011 at the age of 36. You may ask yourself, what is MND?
Motor Neurone Disease is a terminal Neurodegenerative Disease (NDD) which essentially means my central nervous system is unable to send signals to my motor neurons which are critical to be able to move limbs and control movement. Time is not on my side, for 50% of sufferers, life expectancy can vary between 3-5 years from diagnosis. The disease has gradually impacted my ability to use my limbs, to be able to speak and in time will take away my ability to breathe.
MND has changed my life significantly and will continue to do so daily, both mentally and physically. One thing I have learnt along the way is information regarding Motor Neurone Disease is hard to find which is concerning, especially as statistics released Nov 2022 estimate the total number of worldwide ALS /MND cases will increase from 222,801 in 2015 to 376,674 by 2040.
This fundraiser is to raise funds for me to continue on my current drug trial CNM-Au8. The HEALEY ALS Platform Trial based in Boston, Massachusetts was designed to accelerate the development of breakthrough treatments for persons with ALS by testing multiple drugs using a shared infrastructure. CMN-Au8 was one of the first three investigational treatment regimens tested using this innovative paradigm. This particular trial drug is an oral liquid suspension of gold nanocrystals designed to improve nerve cells' survival, function, and communication by supporting their energetic needs while lowering oxidative stress. I believe this experimental drug has prolonged my illness and although I'm deteriorating it seems to be at a slower pace.
The main objective of the fundraising is to essentially provide financial support to cover ongoing medical, transportation and accommodation costs as well as working alongside other charities such as MNDA. and My Name's Doddie.
Time is precious, time is valuable. Please help us in our efforts to prolong this illness and not let MND destroy lives and families.