Advances in ALS research 2021 by Talya Goble

Amyotrophic lateral sclerosis (ALS) is a disease of the nervous system, affecting nerve cells of the brain and spinal cord. These affected cells, called motor neurons, communicate signals from the brain to the muscles in our body and allow for voluntary movement. In ALS, death of these neurons results in progressive weakening and wasting of muscles leading to severe disability. Around 5000 people in the UK are living with ALS at any given time, however, it is still not entirely understood how and why certain individuals are affected.

Currently, Riluzole is the only drug that has been approved for the treatment of ALS in the UK. It acts by blocking a brain chemical called glutamate. Glutamate is responsible for passing messages from one nerve cell to another in the brain. However, motor neurons are particularly sensitive to glutamate and over-stimulation of them can be toxic. Therefore, Riluzole acts to protect against motor neuron death by blocking glutamate and slows the progression of the disease. However, there is still an unmet need for more treatments that can further slow, or even halt, progression of the disease as well as increase the quality of life for those living with ALS.

The vast majority of ALS cases are spontaneous (sporadic ALS) with estimates of only 5-10% of ALS patients inheriting the disorder from a parent (familial ALS). In these rare inherited cases, a few causative genes have been identified, including C9orf72 and SOD-1, and these genes have provided key insights into how the disease can start as well as progress. ALS researchers use a wide range of techniques and species to model the disease from fish to mice to human cells. Each model can provide a piece of the wider puzzle and lead to exciting new drug targets that can be tested in clinical trials.

Clinical trials are essential for finding new and effective treatments and are made up of three phases. The first phase assesses the drug for initial safety and usually involves a small group of healthy participants. The second phase will involve patients and test if the drug is effective as well as safe in those with the condition. If successful, the treatment will move onto the third phase which involves larger groups of patients who will be monitored for a longer period of time for signs of improvement or side effects. Once the treatment is deemed safe and effective by this strict and lengthy process, it can be approved for use. Currently, there are several promising clinical trials for ALS taking place in the UK:

  • Alexion CHAMPION-ALS: this clinical trial based in London and Sheffield is currently in its third phase of studying the new drug, Ravulizumab. Ravulizumab aims to help treat ALS by blocking a component of the immune system. Usually, our immune system is primed to kill foreign material, like bacteria or viruses, or even our own cells if they turn cancerous, but in ALS the immune system can incorrectly attack motor neurons and contribute to their death.  Previously, Ravulizumab has shown to increase survival in mouse models of ALS so announcement of the trial entering its third phase is very promising news.
  • TUDCA-ALS: is currently in its third phase and recruiting across the country. TUDCA stands for the drug it is trialling, taurousodeoxycholic acid, which was previously used to treat liver disease. TUDCA is being explored as an add-on to riluzole treatment and it has shown promise to protect against cell death by working as an antioxidant. Reactive oxygen species (ROS; also called free-radicals) are waste products produced by our cells when they turn the food we eat into vital, useful energy. However, if our cells produce too many ROS, or are less able to clear them up then they can get stressed and damaged. In cases of ALS where nerve cells are less healthy and already overwhelmed, antioxidants can help reduce this stress and protect against their death.
  • Biogen SOD1: is an almost decade-long study that started in 2016 to test the safety and effectiveness of a drug called Tofersen (also called BIIB067). This trial is aimed specifically for the 2% of ALS patients that have a mutation in a gene called SOD1. Each and every one of us have a unique genetic code that we inherited from our parents, our DNA. DNA provides thousands and thousands of recipes for the proteins that make us up, from our hair or eye colour to the enzymes that let us break down certain types of food. Some of the recipes, or genes, can come with mistakes meaning a protein is made that doesn’t work as it should. This is the case for the gene SOD1, where inherited mistakes cause this protein to become toxic, and this particularly affects motor neurons. Tofersen acts by reducing the amount of toxic SOD1 that is produced by the cells of SOD1-ALS patients therefore helping reduce the damage that it causes to motor neurons.
  • Biogen C9orf72 BIIB078: this trial is currently in its first phase, meaning it will be the first time the drug BIIB078 is tested in humans. Like the Biogen SOD1 trial, this trial is aimed at people with an inherited form of ALS, but specifically in those with a mutation in a gene called C9orf72. The C9orf72 gene provides the recipe for the C9orf72 protein which is present in many of our nerve cells and is important for how they communicate with one another.  However, in some people, the C9orf72 gene can be drastically bigger because a portion of the recipe is repeated hundreds of times. Here, this bigger gene can now make toxic products that kills the cells that it is expressed in. It’s estimated that mistakes in the C9orf72 gene are responsible for 40-50% of inherited ALS cases and is also linked with certain forms of dementia. The drug BII078 aims to reduce the number of toxic C9orf72 proteins that are produced, helping to protect them and increase their survival.

The last 18 months have taken a heavy toll on many people, communities and industries. Science research unfortunately has not been exempt from COVID-based obstacles. Nonetheless, many research groups adapted quickly allowing their vital work to continue by switching to online-based tools and home test-kits. Now, as the world begins to open up again, promising times lay ahead for ALS research with the anticipation of fundamental breakthroughs in the field. And with it, a new sense of hope for all those affected with this debilitating disease.

National Diversity Awards 2021 – Nominations

We are thrilled to announce that Jaspal’s Voice has been nominated for the National Diversity Award 2021. We hope that this nomination will lead to further awareness of Motor Neurone Disease.

If you would like to nominate us please click on the highlighted Nominations link below by 4th June.


Thank you for all your support!

#Without A Voice You Feel Alone

Since our event of 29th January on ‘how you can lend a hand to help raise awareness of Motor Neurone Disease’, we have had a huge number of people who were unable to attend requesting a copy of the webinar.

So we decided to create this post where you can watch the webinar below. You can also find the step by step guide on how you can help by clicking here.

Lend A Hand for 2021

2020 was a difficult year for charities and non profit organisations due to COVID 19 and so we have all had to adapt on how we operate. With this in mind we have organised our first 2021 virtual event on Friday 29th Jan, to introduce a campaign which we would like you all to participate in and help raise the awareness for Motor Neurone disease. Outlined below is a step by step guide on how you can help:

Step 1:

Take a piece of A4 paper (or any size available) .

Step 2:

With a marker or pen write in a large size ‘#WITHOUTAVOICEYOUFEELALONE‘.

Step 3:

Ask someone to take a photo of you holding this paper up (if you’re not comfortable showing your face you can hide behind the paper).

Step 4:

Post this picture on your social media (Facebook, Twitter, Instagram and/or
LinkedIn, then tag @JaspalsVoice and 5 (or more) of your friends. Ask them to take the same steps as you have just done.

That’s it! The aim is to spread the awareness to as many people as possible globally. With these 4 steps & your help you will be surprised on the outreach by the power of social media.

How to Tag your friends and Jaspal’s Voice on Instagram

When you post your picture on Instagram, below the caption area you will see ‘tag people’.

Click on ‘ >’

And your picture appears. Tap on the picture and type @jaspalsvoice and tap again to tag your friends. Press ‘Done’ when completed!

Shweta Singh

Jaspal’s Voice is pleased to announce Shweta Singh as our goodwill Ambassador to help raise funds and awareness of Motor Neurone Disease all around the world.

Shweta is the Founder & CEO of ‘Majestic by Shweta Singh’, a multifaceted consultancy focussing on human resources development and personal skills training.

Shweta grew up in a rural part of India where she faced stereotypical challenges associated with being an ambitious female.  From these humble beginnings Shweta had developed a drive and ambition to succeed, to see the world and then to one day return to her roots to help those less fortunate than herself. 

Her achievements are many and varied, from state boxing medallist to mountaineering in the Himalayas, a national award winning pilot and a successful  career in the aviation industry. After a prosperous 10 years in the corporate world she followed her passion of helping others by further founding the National Ambassador for Villages and Aspiration for Mission India‘ NAVAMI’, an initiative designed to bring investment into the rural sector of India with her vision for a self reliant rural India. Keen to have international expertise evaluating her work, Shweta has achieved a place at the prestigious Oxford University.

Her work and campaigning on social issues has been recognised by various International organisations and press, covering awards and accolades including ‘Mrs India Worldwide North 2018’, ‘Youth Development Board’s India Shining Star Award 2019, ‘Mahanagar Mail Global Achiever’s Award’ and ‘Female Icon of the Year 2019’.

As a regular speaker, Shweta brings her strong social influence and status to continue to effect positive change across matters and verticals which are very close to her heart.

We are thrilled to have Shweta’s valued expertise and reach on board.

When Life Throws You A Curveball

It is not often that I write personal blogs but felt I needed to capture certain moments in my life during the pandemic. It’s taken me some time to gather my thoughts and write this post, so here I go………

It all seemed to be going smoothly at the beginning of the new year – 2020. We had been busy organising our first Bollywood style event with MND Association to raise funds and awareness for Motor Neurone Disease. I cannot come close to sharing with you the sheer excitement we felt preparing for this event, as it was the largest we had ever undertaken.

However, the excitement soon turned sour as sadly we were forced to cancel. This was due to the hurricane of Covid-19 and as some of the attendees had Motor Neurone Disease, we couldn’t expose them or others to this deadly virus. But this was the right thing to do as the whole nation came to a complete lockdown not long after.

Trying to absorb all the Covid-19 information being bombarded at us became quite frightening, especially with a vulnerable person in the house. The first few days were challenging but we got into a routine which worked quite well.

I set myself tasks to read my books that had been collecting dust in the bookcase while my husband completed his latest thousand-piece jigsaw puzzle. I also learned how to bake cakes such as Carrot and Victoria sponge cake leading me to become more adventurous with my cooking as it’s not a strong point of mine.

We as a family had embraced a comfortable routine which left no room for boredom, as I was fully aware of the negative impact the lockdown could have on our mental and physical wellbeing.

There was a strange feeling in the air because although we were all living in an element of fear, there were some benefits of the lockdown. The crime rate had dropped dramatically, the traffic noise and pollution in the air was lower due to no cars on the roads and no planes in the sky. The environment as a whole benefitted from this lockdown globally. The stars at night literally shined so bright in the clear sky as we eagerly looked up to watch Elon Musk’s Starlink Satellites- a train of lights in the night sky.

The birds chirping now became louder in the morning and evenings and the local people began to smile and acknowledge you, as the government had allowed us one form of outdoor exercise a day – going for a walk down our street.

Then there was the clapping every Thursday at 8pm to thank our NHS for all their hard work in putting themselves in the front of line of this war against the deadly virus.

During this pandemic I received an email from ‘OWL’ our local neighbourhood watch community asking for volunteers to help the elderly in our community. I noticed there were no volunteers on the list from my road so replied immediately offering my services even though I had a vulnerable person at home. I had my children, all above the age of 20, to help at home, so felt I needed to do what I know best and go out helping to care for others in my community.

I had collected a small but perfectly formed list of people to help – three people over the age of 90 and two over the age of 70 who were unable to collect their prescriptions and food. Having to venture out with my home-made face covering and disposable gloves was scary to be honest, but the thought of helping the vulnerable dissolved my fear.

There were many volunteers in this group who carried out various tasks for the vulnerable and the NHS, which was amazing! I would like to thank Vanessa Rousseau for organising and reaching out to volunteers to help the vulnerable. To acknowledge our support we were all given a beautiful certificate by ‘ Three Rivers District Council’ and ‘W3RT Community & Voluntary Services’.

At the same time the unfortunate rise in job losses were taking place all over the country and many women were now considering learning new skills in order to get back in the workforce to support their families. I had been approached by some such women and asked to advise on what skills they needed to enhance their chances of landing a job.

Through my experience I identified key skills that could be used in any industry and therefore set about creating short courses for them. Other women contacted me wanting to start up their own businesses and I found myself creating simple websites and teaching what I had picked up about the use of social media by hosting weekly webinars.

In a nutshell the challenges during this pandemic made me realise how all the experiences in my life (good & bad) had empowered me to survive through this dark time and become a support system as a wife, mother, daughter, sister, aunt and friend.

It’s A Tough Life….Or Is It?

As if life wasn’t hard enough, now COVID-19 comes into the mix!

I am a 41 year old Sikh Punjabi woman living in London who is now having to adjust to online teaching of Mathematics at secondary school level. Having been brought up in a tight knit and fairly large family this phase of social distancing is also teaching me many new ways of living.

Let’s be honest 2020 hasn’t been a great year so far, our New Years resolutions broke before they even started, and the end is nowhere to be seen. So how do we stay positive in this situation or see the glass half full?

Having struggled with mental health issues almost all my life, aged 40-something I would like to think I have tried many options to stay ‘happy’. Battling with depression and anxiety was very challenging. It took me some time to realise I was a sufferer and more often or not I wasn’t aware I was going through a phase as it was not something I had been educated on. Some days, weeks, months or even years would go by and I would be ‘fine’ but then that shadow of darkness would come and suck me back into this hole. So, I educated myself on this topic and became more aware of the signs and symptoms and how best I could manage these cycles. From visiting Gurudwaras to watching numerous comedies, I have explored multiple avenues to make me feel better. It is safe to say some worked and, well, some were not so great (for me that is) however what I have needed to work out is which ones works best for me in this new lifestyle?!

1 in 4 of us in the UK suffer from some kind of mental health issues, predominantly depression or anxiety, and I am sure the current climate hasn’t helped these figures. So that is 1 in 4, 25% percent of the UK’s population of almost 68 million, 17 million are struggling with their mental health. A shockingly large number but also a comforting number to know when you feel you are alone in this ‘state of mind’.

So, what can we do to help ourselves from feeling lost, lonely, or stuck in this dark place that not many seem to understand? I have learnt several ways that work for me, maybe they will help you, too.

I want to share a few tips and tricks that have worked for me to get through these tough times and make life easier on those difficult days when you just do not see the point in anything.

1. Gratitude – spend 10 mins in the morning, afternoon and evening being grateful for the simplest of things. The fact you are alive, the birds chirping outside your window, the family around you or even having a roof over your head are amazing factors in your life. Being grateful for what you have helps you move away from thinking about what you don’t have.

2. Mindfulness – make sure that your MIND is not FULL of unnecessary worries or thoughts that you cannot control and try to become MINDFUL of everything around you. Be aware of the most basic things using your five senses which will make you appreciate the world around you. God (or the Supreme energy) has blessed us with the painting of life which needs time to be admired. After a long time or the first time for some of us we have this time. Aren’t we lucky!

3. Meditation – Last but not least is meditation. One of my favourite hobbies if you like is to try various meditation techniques. Meditation is a spiritual practice which has been practiced in one form or another in virtually every religion so there must be something in it, right? To me it provides me with an escapism from the outside chaotic world, the warmth of a colourful internal world and the chance to give my mind a break which is working overtime during the day and even at night when I’m sleeping. Though it takes time to achieve complete bliss and avoid any thoughts when sitting in meditation it most definitely gives me the opportunity to take ‘time out’ from the fast pace life and provides light in the darkness around me.

Ultimately by taking small steps we can work towards lifelong change.

There’s no harm in trying! ‘If you think you are too small to make a difference try sleeping with a mosquito’ .

(Dalai Lama)

By Aanika

Talking Therapy on the film festival front

In reaction to the Covid-19 pandemic and its impact on the mental health of artists and filmmakers, the annual Tongues on Fire UK Asian Film Festival (UKAFF) marked Mental Health Awareness this week with a new initiative called Talking Therapy tailored for the entertainment world.

As part of this unique offering, therapists will be at hand to provide a phone support service for artists in need. The service aims to offer emotional support, signposting problems, advice and information along with details of organisations and support available on a case by case basis.

“We are launching a much-needed free Talking Therapy service for artists working in the creative and media industries because during these difficult times, people are feeling anxious and isolated, worried about the financial uncertainty and in some cases the loss of loved ones,” explains Dr Pushpinder Chowdhry MBE, the founder of UKAFF and a qualified psychotherapist.

“We would like to support artists and filmmakers by helping them explore, through Talking Therapy, a range of options that are out there but most importantly being there to listen,” she said.

As part of the service, artists will be able to access a safe space to speak in confidence with a therapist, who will listen and consider possible options.

The support line is open to help UK-based artists dealing with issues such as bereavement, depression, anxiety, stress, worry, feeling lonely and isolated, having relationship problems or suffering domestic abuse.

To access the therapy, artists can call a dedicated helpline (07930 491915) and leave a confidential message providing contact details and their preferred time of contact. A therapist will then call back within 24 hours.

Tongues on Fire is a not-for-profit organisation that provides a platform for independent film and arts from South Asia. It celebrates Indian culture, its vibrancy and its many dimensions through storytelling, live events, master-classes and cinema screenings.


How To Make A Face Mask In 1 Minute – No Sewing!

As an experienced carer for MND, Heart, and Parkinson’s Disease patients, I understand the need to wear a mask around the vulnerable for their protection.

During this global Covid-19 pandemic I am currently a volunteer helping the elderly in my community who are self isolating and due to the shortage of masks I made some washable and reusable face masks. I was inspired by a study carried out by Cambridge University in 2013 (Cambridge Study) which examined homemade masks as an alternative to commercial face masks.

Please share this video as an article in the NY Times reports ” poorer countries losing out to wealthier ones in the global scrum for masks”. The shortage of face masks is worldwide and the developing countries are struggling, so we can all help by sharing our techniques.

This method shows a quick and simple way to make a face mask and most of all helps reduce the spread of this ugly virus. Stay Safe.

What You Need To Know About Covid-19 If You Have Motor Neurone Disease

MND Association released a short video to help those living with motor neurone disease or caring for someone with motor neurone disease to understand the implications of the coronavirus.

Please click on the link below: