I took this of me yesterday for the MS Society's kiss your hand, kiss goodbye to MS campaign (I have MS and attend the National Hospital For Neurology and Neurosurgery that is around the corner from Great Ormond St and part of UCLH, where I also attend). My daughter and I were on a billboard and in campaign literature about MS Research last year after my daughter was a finalist in the MS Awards Young Carer of the year awards. For the #kissgoodbyetoMS campaign you are supposed to give up something and fundraise, I'm rubbish at fundraising but more of an ideas person so I have sent them some ideas for another campaign they were asking about. I've also been trying to get the MS Society, the hospital, Mark Zuckerberg and various DNA researchers, universities and others to use data from descendants of my family tree (two of which go back quite far in Scotland and one in the UK / Europe) to explore why Scotland has a 20% higher rate of MS than the UK (Native Americans hardly any MS at all, nor do Africans). My basic DNA is on Ancestry.com under my original name name of Victoria Alexandra Cabrini Quin-Harkin and doing this has, apart from putting my daughter and I in touch with DNA matches and helping me to verify bits of my family tree for the memoir I am writing, has told us we have trace elements of Native American DNA. As someone who has had MS since age 19 and has been a database manager for IDG media and who did an MA thesis on examining data and reporting techniques in Africa / on the LRA I think there is a lot of scope for research in this area.
It was only a couple of years ago that a genetic link to Progressive MS was discovered by scientists and I hope that, with the latest technology available and data collection possible via widespread collection of DNA through companies such as Ancestry and others, that it may be possible to fund and conduct a very wide-scale and deep research project into the factors that make people more susceptible to MS and factors that protect against it genetically. And hopefully obviously that this might lead to better treatments and ultimately prevention or cure via new developments in gene editing techniques such as CRISPR. Ultimately the intersection of these technologies this has implications for many other diseases also. As a lone parent with MS who is also writing and editing a Memoir I have very little time or funds available, I am therefore not interested in working on this project full time and only in contributing on a consultancy basis.I am also having a hard time getting hold of people like Mark Zuckerberg's contacts, If you are interested in working with me, taking this research forward, funding it or can put me in touch with anyone that can then please get in touch. My email is victoria@alexcabrini.com.