crowdfunding – Prof G's MS Blog Archive

#MSCOVID19: round-2 a series of webinars

I would like to say thank you, thank you and thank you for your kind donations towards the Barts-MS coronavirus antibody study. With gift aid, we have now passed the £10,000 milestone and will be able to start the first phase of the study. This is great news.

To raise the additional money I won’t be running a double-marathon, but we have taken up your suggestion of hosting a series of webinars. We have not are not going to charge anyone as such for attending these webinars; instead, we will simply ask you to consider making a donation in kind towards our study.

“What is the real MS and why is it important to know the answer?” will be the first webinar, in a series of webinars, to raise funds for the Barts-MS Coronavirus Antibody Study.

This webinar will be delivered by Professor Gavin Giovannoni on Thursday 12th November 2020 from 17h30-18h30. The number of places is limited and will be allocated on a first-come basis. As a registrant, you are being asked to make a donation to support the Barts-MS COVID-19 Coronavirus MS Antibody study via our JustGiving page. The following is a short interview with main investigators explaining why this study is so important to people with MS.

CoI: multiple

#MSCOVID19: it’s over, but it is not

Barts-MS rose-tinted-odometer: ★★★★★

I have just completed the Virtual New York City Marathon in London and have clearly survived to tell the tale. Not only did I prove many doubters wrong, I even managed to surprise myself by dipping under the 3:20 mark (3:19:07 when I clocked 42.2km on my Garmin). It was only 3 years ago, due to chronic right hip pain, that I decided my running career was over. I interpreted the pain as being due to early osteoarthritis. Despite still having some hip pain it is so much better than it was. I suspect losing weight and exercising, or using the hip, has given it a new lease of life. This for me is one of the positives of COVID-19.; it has allowed many people like me to reassess their lives and to do different things. If COVID-19 hadn’t happened I would not have just completed a virtual marathon. My experience gives credence to the saying ‘use it or lose it’.

My motivation for doing the marathon was to raise money for Dr Ruth’s and Dr Kang’s COVID-19 antibody study. The reason ‘it is not over yet’ is that we have many miles to go before we reach our target of £25,000. The good news is that we very close to raising £10,000, which is the first funding milestone, which will allow us to actually start the process of recruiting pwMS and collecting their bloodspots on Guthrie cards for our antibody assay.

Prof G after completing his NYC virtual marathon

I, therefore, want to take a moment and thank those of you who have been so generous and donated money to our study. Your support and encouragement are much appreciated. For those of you who have not donated yet please consider making a small contribution; every little bit helps and also demonstrates that this is not just our project, but a community project.

The next phase of our fundraising will involve a series of topical webinars, but more on that later. At the moment we are discussing the logistics of how we can make this happen in a way that allows everyone to have a chance of attending the webinars.

If you have other ideas for us to raise the money please let us know.

CoI: multiple

Twitter: @gavinGiovannoni Medium: @gavin_24211

#MSCOVID19: dropping dead

Barts-MS rose-tinted-odometer: ★★★★★

“Did you hear that Professor Giovannoni dropped dead after attempting to complete the virtual New York Marathon trying to raise money for a multiple sclerosis research project?”

“Prog G finally throws in the towel and arranges to see an orthopaedic surgeon about his failing right hip. His attempt to complete a marathon to raise money for MS research was one run too many.”

“Prof G’s kidneys finally pack-in after excessive use of non-steroidal anti-inflammatories in his futile attempt to complete a marathon and raise money for MS research.”

These are some of the comments I am getting back from my colleagues, who are concerned about my potentially foolish attempt to run a marathon. Please don’t be concerned about me I wouldn’t be taking on this challenge if I didn’t think I could complete it. As proof that I am getting close, I managed to complete a 20-mile run on Sunday; all I need to do is extend that by 6.2 miles in a few weeks time.

The reason for taking on this challenge is to raise money to complete a very time-sensitive research project that is very relevant for people with MS. We have developed an ultrasensitive GloBody assay to detect antibodies against coronavirus that can be run on blood spots that are collected at home and posted to our laboratory.

Our preliminary data indicates that our assay is more sensitive than the two commercial assays (Roche Diagnostics and Abbott laboratories) that are currently available via the NHS. The GloBody assay is detecting antibodies in people who are ‘antibody-negative’ on the commercial assays. This finding may be very important going forward and to help pwMS come to terms with their risk of getting COVID-19 and potentially help to detect antibody responses to any future coronavirus vaccine.

To borrow a metaphor we have an oven-ready study that needs to be done in the next month or two. We lost our funding when the charity that was funding this project realised they had a funding shortfall due to COVID-19. Prior to hearing this bad news, we had already been given the green-light by our research office and ethics committee to proceed with the study; this is why the study is oven-ready.

As our assay is now running and is closed to being validated would you be interested in getting yourself tested for a small amount? The result will then be sent to you and we would use the money collected from providing a service to pay for the service and to support the costs of the laboratory component of the MS seroprevalence study. Your thoughts, please?

If you haven’t done so already we would appreciate any microdonations so that we can start the study as soon as possible.

Thank you.

CoI: multiple

Twitter: @gavinGiovannoni Medium: @gavin_24211

#MSCOVID19 running the talk

Barts-MS rose-tinted-odometer: ★★★★★

In anticipation of a second-lockdown at a meeting with colleagues last night I was asked the question about what positive experiences I could reflect on from the first lockdown. Firstly, no international travel and a focus on family, home life and the realisation that we can live more sustainably. Secondly, walking or running the talk. I decided to take my own prehabilitation advice seriously and I have managed to rehabilitate my physical and mental self and get my right hip working again. This is quite remarkable. Three years ago I had written off any future prospect of running long distance never mind a marathon. Six months into the pandemic and I am getting ready to try and complete a marathon in a months time. Why? Funding and important time-sensitive research for people with multiple sclerosis.

We have a problem with the current antibody tests for detecting past infection with coronavirus. The current assays are not sensitive enough and are not detecting antibodies in a large number of people with asymptomatic or mild infection and possibly in pwMS who are on certain immunosuppressive disease-modifying therapies, in particular the anti-CD20 treatments rituximab, ocrelizumab and ofatumumab. Detecting antibodies in these people is really important in that it would indicate that they have been exposed to the virus and therefore likely to have cellular immunity.

In response to this challenge and thanks to a grant from the Barts Charity, our group (Dr Kang and his team) have developed an ultrasensitive assay (GloBody) that will work on blood spots. Preliminary results show that the assay is detecting antibodies in samples that have been called negative with commercial antibody assays. This is not unexpected because the assay was designed to have amplification steps to detect very low levels of antibodies. We did this because we want to study low-level antibody responses in pwMS on and off different DMTs.

This assay will now allow us to test a large number of pwMS using self-collected blood spots to see if they have been infected with coronavirus and are now immune. The tragedy is we have been promised a grant to do the initial part of this study by a charity. However, as donations have dried up this charity can’t afford to give us the money to cover the initial costs of the study. This is when I took up your suggestion to crowdfund. To show how serious I am about the crowdfunding I have decided to run the virtual New York City Marathon. All I have to do is record a single 42.2km run using the GPS-tracking application STRAVA sometime between the 18th October and 1st November.

In reality, I started my training very late and don’t really have the time to get truly marathon ready. However, as it is so important for us to raise the money so we can get this critical time-sensitive research done I am going to give it a go anyway.

I would like to thank those of you who have already sponsored me. I would also like to urge you to donate to our cause. Even a small donation or £2-£5 would help. Microdonations all add-up.

Thank you.

CoI: multiple

Twitter: @gavinGiovannoni

Medium: @gavin_24211