Proud to Contribute to the Autoimmune Encephalitis Alliance July 2020 Newsletter

Proud to Contribute to the Autoimmune Encephalitis Alliance July 2020 Newsletter

Thank you so much Caterri Woodrum and the Autoimmune Encephalitis Alliance in the USA for asking me to contribute an article about my Dad’s diagnosis of CASPR2 antibody encephalitis, his journey and his recovery 🥰🥰

It is SO important to raise awareness of autoimmune encephalitis, as it can very easily be put down to other conditions by GPs, doctors and neurologists. We were so close to my Dad’s symptoms being put down to motor neurone disease and associated dementia, but with treatment he is making some small improvements.

It was also very difficult to get this article into around 800-900 words as I have so much to say to raise awareness of my Dad’s condition. This is just the beginning of what I intend to do to raise much-needed awareness of autoimmune encephalitis and the effect it has on those who suffer from it and their families. My book “Encephalitis Daughter” will be released later this year which will focus on my Dad’s journey and diagosis, his road to recovery and the impact his illness has had on us as a family.

You can read my article in their July newsletter here https://aealliance.org/the-july-newsletter/.

Lisa Ventura Shortlisted in the Positive Role Model (Gender) Category for the UK’s Largest Diversity Awards

Lisa Ventura Shortlisted in the Positive Role Model (Gender) Category for the UK’s Largest Diversity Awards

Lisa Ventura is honoured, proud and humbled to announce that she has been shortlisted for the Positive Role Model (Gender) category at the National Diversity Awards 2020.

A record breaking 64,000 people nominated this year alone and the results are finally in for the National Diversity Awards (NDA), with an astonishing 126 nominees being recognised for their various achievements nationwide.

Community organisations and role models from across the UK will head to the breath-taking Liverpool Anglican Cathedral on 26th February to witness the countries 2020 winners being crowned the best of British diversity. Amongst those being honoured are charities, campaigners and activists, all of whom work tirelessly to combat injustice and discrimination in very different ways.

Nielsen, Direct Line Group & The Open University have recently been announced as sponsors of the pioneering awards that have paid tribute to over 800 grass root groups and diversity champions since its inception. ITV News are also listed amongst a host of companies showcasing their support to recognising diverse talent, providing a platform to our unsung heroes.

Rachel Corp, Acting Editor, ITV News said: “We are pleased that ITV News will once again be supporting the National Diversity Awards. ITV News remains committed to telling the stories of those, who through their work and dedication to helping others have made a difference; enhancing equality, diversity and inclusion in our society. We look forward to introducing the 2020 nominees to our viewers across the regions and nation.”

Designed to highlight the country’s most inspirational and selfless people, the NDA’s continue to gain endorsements from high profile figures such as Sir Lenny Henry CBE and Graham Norton. Activist Katie Piper, Presenters Alex Brooker & Ade Adepitan MBE and Emmerdale star Ash Palmisciano were on this year’s judging panel, dedicating their time to help choose the highly anticipated shortlist.

Actress and comedian Sally Phillips will take centre stage on 26th February as the official host of this year’s ceremony. Sally said, “This year has presented historic challenges for everyone but with them we have also seen extraordinary and heroic achievements of people fighting to keep some of our most vulnerable communities supported. We need a spotlight on our communities, need, human rights and care for those on the outside like never before. We need to meet, exchange ideas and resources and pool skills more urgently than ever. I am ever-grateful for the NDA network and couldn’t be prouder to be returning to their tremendous awards as host for a second time. See you there?”

Previous winners include actor Warwick Davis, men’s mental health charity Andy’s Man Club and reformed breast cancer survivor Codilia Gapare.

Paul Sesay, Founder and CEO of the National Diversity Awards added, “During difficult and challenging times, it is now more important than ever to recognise our countries true role models. The nation has embraced the diversity of our country and exceeded every other year by submitting a record breaking 64,000 nominations and votes. Let me reiterate that creating this shortlist was no easy task. The profound impact made by all our nominees is astonishing, and I feel personally encouraged to know that so many lives are being changed for the better due to the many causes being championed by all of you. After weeks of deliberating and thousands of heartfelt testimonials later, I am delighted to finally present to you the best of British Diversity. Congratulations to all of our shortlisted nominees, it is an honour to recognise your fearlessness, resilience and humanitarian efforts with the rest of the world. Let’s continue the fight for justice, unity and equality for all”.

To view a full list of nominees please visit www.nationaldiversityawards.co.uk/shortlist.

Happy 72nd Birthday to the NHS

Happy 72nd Birthday to the NHS

Happy birthday to you,
Happy birthday to you,
Happy birthday NHS….
Happy birthday to you.

Today marks the 72nd birthday of the NHS, and there is a final #ClapForCarers event taking place at 5pm tonight to mark the occasion. I don’t think I have ever been so grateful for the NHS and what they are doing to keep everyone who contracts coronavirus safe and alive, while also attending to those with other illnesses and conditions. Everyone who works in the NHS, no matter what their role is, is a hero to me.

I feel so lucky and privileged to be able to access healthcare at source whenever I need it, and to book a GP appointment if I need one without having to pay. You could argue that we pay for it through our NHS contributions of course, but that is a small price to pay to be able to see a doctor more or less on demand and to have access to specialists, nurses and doctors when we need them. The NHS should be treasured, because I fear for a day that it becomes a privatised institution.

I’ve had my share of help and support from the NHS over the years – so have my family – and I can’t thank them all enough. We’ve all heard horror stories, and the system isn’t by any means perfect, but we are so lucky to have access to it. In 2013 I had incredible support when I was pregnant with my unborn son Francesco “Frankie” Enrico Ventura. When a severe cleft lip and palate was picked up in him during my 5 month scan I was referred within 3 days from the Worcestershire Royal Hospital to the Foetal Medicine Unit at the Queen Elizabeth Hospital in Birmingham under obstetrician Professor Mark Kilby. When other problems were detected with him, I was supported every step of the way as I prepared to be a full-time Mum to a son who would need 24-hour round the clock care and support.

When my son was stillborn on 29 November 2013 the care and support I received at the Worcestershire Royal  Hospital was second to none, especially from the hospital Chaplain Rev’d David Southall who went on to become a good friend to myself and my family. I had genetic testing and so did my husband and family at the Queen Elizabeth Hospital in Birmingham when they found after my son was stillborn that he had a very rare chromosome duplication on his chromosome 15, and I know that would not have been cheap. I’m very grateful to the NHS for that and for their support.

With my son Francesco “Frankie” Enrico Ventura and my good friend Rev’s David Southall, Chaplain at the Worcesershire Royal Hospital. Rev’d Southall is baptising my son.

Today I am even more grateful to them for finally getting to the bottom of what was wrong with my Dad and diagnosing him with CASPR2 antibody encephalitis, which is extremely rare and only 45-50 people globally have been diagnosed with this particular kind of encephalitis, which is autoimmune. My Dad has had brilliant support from Dr Tom Heafield, his neurologist at the Worcestershire Royal Hospital and Professor Sarosh Irani and his team at the John Radcliffe Hospital in Oxford who my Dad is now under due to the rarity of his autoimmune condition.

In addition to this my Dad is of huge interest to Dr Saiju Jacob, consultant neurologist at the Queen Elizabeth Hospital in Birmingham and to Dr Mike Zandi, consultant neurologist at the Queens Hospital in London.  The only small gripe I have with my Dad’s illness and condition is that it took the NHS nearly 3 years to get to the bottom of it – my Dad was very close to being diagnosed with motor neurone disease with associated dementia – and he didn’t have either condition. But they got there in the end, and for that I am extremely grateful.

With my Dad when he was in the John Radcliffe Hospital in Oxford in March 2020, just prior to lockdown, getting treated for his CASPR2 antibody encephalitis under Professor Sarosh Irani.

I can’t even begin to imagine what every single NHS worker is going through right now with the coronavirus outbreak and pandemic, I am in awe of each and every one of them for what they do for us. They deserve our most lavish praise and most outstanding ovations (as the quote goes in the film “The Greatest Showman”). How they cope day after day, night after night is incredible.

If my Dad was living in the USA, even if he had the best health insurance policy that money could by over there, he would NOT be covered for CASPR2 antibody encephalitis. Autoimmune conditions are excluded from health insurance policies in the States and he would have to thousands and thousands of dollars for his treatment despite having insurance.  This brings it home even more as to how lucky we are to have access to healthcare when we need it.

Of course, if we have the money or insurance policies we can bypass the NHS and pay to have certain treatments and operations privately – but the majority of us are not so lucky – and this is only going to get worse as the pandemic grows, job losses occur and people lose their businesses and livelihoods. We MUST treasure our NHS with everything we have got. If I had the power to grant every specialist, professor, doctor, nurse, healthcare professional and person who works for the NHS a pay rise I would do so in a heartbeat. It is scandalous that they are paid so little for everything they do for us.

So happy birthday NHS, and THANK YOU for everything you do for us, especially during these unprecedented times with the coronavirus pandemic spreading like wildfire all over the world. I treasure you all more than you will ever know. On a person note, thank you for all the help, support, treatment and care I and my family have received from you. You all have my deepest and utmost respect for what you do.

Lisa Ventura Named as one of the “Most Influential Women in UK Tech by Computer Weekly Magazine

Lisa Ventura Named as one of the “Most Influential Women in UK Tech by Computer Weekly Magazine

Lisa Ventura is proud to announce that she has been named as one of the “Most Influential Women in UK Tech” in Computer Weekly for 2020.

When Computer Weekly launched its list of influential women in UK IT in 2012, it only featured 25 women. It was later expanded to include 50 women to ensure as many as possible are recognised each year.

Each year, they aim to ensure the nominations for the 50 Most Influential Women in UK Technology are as diverse and inclusive as possible, regardless of age, disability, race, religion or sexual orientation, including trans women and those who identify as non-binary.

Readers will be to vote on who they think should be chosen as the Most Influential Woman in UK Technology 2020 to help the judges make their final decision – but they also wanted to reveal all of the nominees who were considered.

For more information about Computer Weekly’s “Most Influential Women in UK Tech” long list please visit https://www.computerweekly.com/news/252485588/Most-Influential-Women-in-UK-Tech-The-2020-longlist

Lisa Ventura Nominated in Computing Magazine’s 2020 Women in Tech Excellence Awards

Lisa Ventura Nominated in Computing Magazine’s 2020 Women in Tech Excellence Awards

Lisa Ventura is proud to announce that she has been nominated in the 2020 Computing Magazine’s Women in Tech Excellence awards in the “Positive Role Model” and “Woman of the Year” categories for her work supporting women in cyber security and in neurodiversity.

The winners of the awards will be announced on Wednesday 25 November 2020 at The Brewery in London.

Computing Magazine’s Women in Tech Excellence awards is a prestigious event which exists to recognise top-performing women from across the technology space and provide inspiration for younger women looking to build a career in the tech industry. They are designed to help the industry by recognising and promoting the many talented females, and other success stories. There are places in IT for females, and this industry can lead to rewarding, fulfilling careers for everyone.

For more information about the awards please visit https://womenintechexcellence.co.uk/womenintechexcellenceawards2020/en/page/home