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Giving MS patients a digital sense of community

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Through the creation of BelongMS, people living with Multiple Sclerosis around the world are being supported in new and innovative ways. Its co-founder and CEO, Eliran Malki, shares the reasons for its foundation and the impact it is delivering

People who live with a chronic medical condition are often faced with a difficult choice: succumb to the condition or be proactive in managing it. Evidence shows that where sufferers are actively engaged, they maintain better mental health, which in turn has a positive effect on their physical health. The challenge is knowing where to turn to get the support that is best suited to their unique condition.

 

How Did it All Begin?

When a close family member of mine was battling cancer a few years ago, I realized something was missing in the way patients and caregivers manage the illness journey. Partnering up with two friends in a similar situation, we founded Belong.Life and our first app, Belong-Beating Cancer Together was created. What started out as us three entrepreneurs working out of a garage, has organically grown to be the largest cancer network in the world, with users in over 100 countries. Belong.Life now seamlessly connects patients and their caregivers with peers and medical professionals, all via an app on their phone.

Following the success of Belong-Beating Cancer Together, we started building the same platform for the Multiple Sclerosis (MS) community –BelongMS. Around 2.3 million people live with MS worldwide; the disease attacks the central nervous system and can cause varying symptoms, such as extreme fatigue, problems with vision or balance and gaps in memory. Lifetime costs for a patient in the US have been estimated to exceed $4 million, creating a deep need for access to the latest information about treatments.

Too often, patients are left with only technical resources at a time when they really need personal support. This is not a criticism of healthcare providers, but rather a reflection of the pressures in the health systems around the world, driven by the number of patients and budget concerns. We wanted to counteract this issue and improve the quality of life and quality of care for patients through connecting with others by leveraging our patient engagement insights and extending our proven machine learning technology to provide effective support for patients across the healthcare continuum.

How Belong is Connecting the MS Community and Ecosystem 

BelongMS is a free and anonymous AI-powered social networking and navigation platform for multiple sclerosis patients, caregivers and healthcare professionals. The app offers support groups and direct access to medical professionals, including neurologists, radiologists, urologists, and others who can answer patient questions. When opening the app, every user sees a personalized feed according to their  specific medical diagnosis, interests, situation and challenges. The app also provides useful tools, including a medical binder manager to store and organize medical records in one place, with the option to share them securely and privately with family members or physicians. A clinical matching trial feature is available as well, utilizing Natural Language Processing (NLP) algorithms to analyze all available trials around the globe to match patients within two weeks, on average – we’ll dive into that soon. 

Ultimately, BelongMS provides MS patients and their caregivers a safe meeting place where they can learn more about the condition, get updates on the latest treatments, and support each other. As the platform is entirely anonymous, it allows for completely open communication without any feelings of embarrassment or shame.

After launching in May 2020, we are very proud that BelongMS is now the world’s largest social and professional network for multiple sclerosis patients, with over 100,000 users in the US alone and more around the world accessing and gaining support from the app. 

The Belong Clinical Trial Matching Service 

Clinical trials play a major role in MS research, while also providing patients with access to the latest treatment technologies. They have been instrumental in the development of new drugs for patients with MS and participating in a trial helps both current and future patients dealing with the same disease, making it an essential step forward in increasing the range of treatment options.

However, finding a relevant trial can be challenging. The sheer volume of available clinical trials for MS can prove overwhelming for many physicians and patients and many available clinical trials databases present complex criteria explained using medical language, making it hard for humans as well as existing Natural Language Processing (NLP) technologies to analyze them. Even well-informed patients face challenges with the technical language used and the very granular nature of the inclusion and exclusion criteria. This leaves many patients unaware of the trials that could be their best hope for a cure or remission and a high number of trials critically under-enrolled.

In addition, MS patients often face another hurdle. Some of them find it hard to concentrate over time, and many of them experience some cognitive difficulties (AKA ‘cog fog’ among MS patients), making it tough to digest the vast amount of information found within the clinical trials databases. 

BelongMS already helped ~2,000 patients find relevant clinical trials relevant, and while our AI technology does 95 per cent of the heavy lifting, our clinical trial coordinators consult with the users in order to  develop the final short list that meets the individual’s preferences and needs, such as inability to travel significant distances. 

Current achievements in the treatment of MS are mainly based on the outcomes of clinical trials that demonstrated valuable results in treating a disease which has an unpredictable course. As treatment options for MS broaden, future clinical trials will continue to incorporate new strategies to identify novel therapies and pathways of intervention, for the betterment of the MS community – Belong is honored to be a part of this journey.

In Conclusion

BelongMS is helping MS patients and caregivers all over the world to understand the treatment journey through reliable, professional and customized information. We’re providing an opportunity for the MS community to become proactive and participate in their own medical care. Our platform is not only improving patients’ quality of life but reducing the workload of doctors and hospitals by helping patients navigate their treatment journey with more independence. We hope to continue empowering patients and caregivers on their MS journey to manage their condition proactively and enjoy life to the maximum.

 

Eliran Malki is the co-founder and CEO of Belong.Life, developer of the world’s largest social and professional networks for cancer and MS patients and healthcare professionals. A tech entrepreneur with experience in big data and high throughput analytics, Eliran previously founded three tech companies and transformed them from ideas into successful businesses and exits. Eliran’s focus is improving access to life-saving information, allowing patients and caregivers to better navigate the treatment journey and improving the quality of life for people battling diseases.

Belong.Life  develops social and professional networks for managing diseases, patient journeys and communities and is the creator of the world’s largest social and professional network for cancer patients (Belong-Beating Cancer Together), BelongMS, BelongIBD (select countries), CoronApp and more. Belong.Life’s mission is to improve the quality of life and quality of care around the world through technology, engagement, data and AI for patient communities, healthcare organizations, pharma and hospitals. The company’s end-to-end solutions encourage the formation of patient communities, and provide care coordination, customized content and advanced management features for users. Delivering actionable insights into patient journeys, Belong uncovers key trends and patterns that can help improve global care.

MS

Brain molecule ‘wake ups’ cells that could help tackle MS

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An immunological molecule called fractalkine can boost the production of brain cells that produce myelin, a key factor in diseases such as MS, a study shows.

Myelin is an insulating layer around nerves that is gradually worn away by inflammation in multiple sclerosis and similar diseases.

Without this layer, the nerve impulses that travel through the body are slowed, causing neurological problems.

Though there are therapies that manage symptoms or attempt to slow the progression of neurodegenerative diseases, effective treatments would require restoring lost myelin.

Finding methods to kick the myelination process into high gear is a crucial step in the quest for treatment.

The study was carried out by University of Alberta researchers.

Anastassia Voronova (pictured) of Department of Medical Genetics, explains that neural stem cells produce a variety of brain cells, including oligodendrocytes, a type of cell in the central nervous system and peripheral nervous system. Oligodendrocytes are the only brain cells that produce myelin.

“During development, these neural stem cells build the brain. In the adult brain, part of the reason they exist is to replenish damaged or lost cells, including oligodendrocytes,” she said.

“However, especially in humans, replacement of oligodendrocytes is very inefficient. The goal of my lab is to identify molecules that are capable of ‘waking up’ those neural stem cells we all have in our brain to replenish those oligodendrocytes.”

Voronova’s study showed that fractalkine — a molecule previously thought to have a role only in the immune system — noticeably stimulated the transformation of neural stem cells into oligodendrocytes.

“The [fractalkine] molecule and receptor work together to elicit a signalling cascade inside of the cell,” said Voronova.

“This is a really interesting era to be doing this science in. I think we’re just starting to appreciate the full spectrum of what these oligodendrocytes can do.”

Voronova’s team is now investigating the remyelination capacity of fractalkine in a mouse model of MS. Voronova also plans to examine whether fractalkine could affect myelination in other neurodegenerative disorders.

She added that the immunological nature of fractalkine could also be important for future drug development, as MS and neurodegenerative disorders have a strong immune component.

“Myelin is diminished in a variety of neurodegenerative disorders, which makes the idea of enhancing oligodendrocyte production, and therefore repair of the myelin, so exciting.”

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MS

MS and depression ‘increase risk of death and vascular problems’

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Depression is common in people with multiple sclerosis (MS), and a new study shows that people with both conditions may be more likely to die over the next decade than people with just one or neither condition. 

The study also found that people with MS and depression have an increased risk of developing vascular disease such as heart attack and stroke.

“These findings underscore the importance of identifying depression in people with MS as well as monitoring for other risk factors for heart disease and stroke,” said study author Dr Raffaele Palladino, of Imperial College London.

“Future studies need to be conducted to look at whether treating depression in people with MS could reduce the risk of vascular disease as well as death over time.”

The study involved 12,251 people with MS and 72,572 people who did not have MS. Researchers looked at medical records to see who developed vascular disease or died over a period of 10 years. 

At the start of the study, 21 per cent of the people with MS had depression and nine per cent of the people without MS had depression.

The researchers found that people with both MS and depression had a mortality rate from any cause of 10.3 cases per 100,000 person-years. 

Person-years take into account the number of people in a study as well as the amount of time spent in the study. The mortality rate for people with MS without depression was 10.6, for people who had depression without MS it was 3.6 and for people with neither condition it was 2.5.

Once researchers adjusted for other factors that could affect the risk of death such as smoking and diabetes, they found that people with both conditions were more than five times more likely to die during the next decade than people with neither condition. 

People with MS without depression were nearly four times more likely to die than people with neither condition and people with depression without MS were nearly twice as likely to die.

For the risk of vascular disease, the rate for people with both MS and depression was 2.4 cases per 100,000 person-years; 1.2 for people with MS without depression; 1.3 for people with depression without MS; and 0.7 for people with neither condition.

After adjusting for other factors, researchers found that people with both conditions were more than three times as likely to develop vascular disease as people with neither condition.

“When we looked at the risk of death, we found that the joint effect of MS plus depression equaled more than the effect for each individual factor alone—in other words, the two conditions had a synergistic effect,” Dr Palladino said. 

“A total of 14 per cent of the effect on mortality rate could be attributed to the interaction between these two conditions.”

A limitation of the study was that researchers did not have information on risk factors such as body mass index (BMI), which could affect the risk of vascular disease and death.

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Mum and son innovators look to bring their Walking Wheelchair to reality

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A mother and son team who have devised a pioneering standing wheelchair are looking to partner with a manufacturer to bring their prototype to fruition. 

The Walking Wheelchair enables people with limited use of their legs to assume a standing position, using a saddle therapy seat and Segway-style wheelbase. 

Its design, which is aimed at people living with conditions including Muscular Sclerosis, Cerebral Palsy, Motor Neurone Disease and spinal injury (L1-5), is protected by patent and has already won awards for its innovative design. 

It differs from what is already available through its saddle seat lifting the user’s weight vertically to standing, rather than a conventional seat which tips, and has a gyroscope to balance the standing weight instead of a counterweight. It also has a two wheel wheelbase with a tight turning circle rather than the standard six-wheel base. 

Now, its creators Suzanne Brewer and her 14-year-old son Jarvis, are looking to bring their idea to reality by finding a company to license the Walking Wheelchair and add the product to their range. 

Work on the idea for the Walking Wheelchair begun in 2018, when Jarvis was just 11, and he and his mum were inspired by the experience of Andy Masters, who lives with spinal injury and uses a wheelchair, at an event they had attended at their local rugby club in South London. 

Unable to be noticed amidst the clamour at a busy bar, Suzanne and Jarvis realised the everyday struggles Andy and others who use a wheelchair must experience, and were compelled into action by a children’s enterprise competition being run by Sky News. 

From there, the concept has developed hugely, with its initial prototype being redesigned following insight from experts at Stoke Mandeville Hospital and the Back Up Trust – with the design’s inspiration Andy being one of the advisors – and product is now ready to launch. 

Suzanne, an architect and owner of Suzanne Brewer Architects, will be exhibiting at Naidex 2021 in their search for a partner to help launch the Walking Wheelchair. 

“From seeing the need for a more discrete standing wheelchair than anything that was available, we did some designs and then ordered the parts from eBay so we could build it – we had to take it to a prototyping company for that bit, that was a bit far for us,” recalls Suzanne. 

“We have had some great insight and support to help us on our journey. For example, Jarvis loves being on his bike so we initially included a bike seat, but after we visited occupational therapists at Stoke Mandeville, they recommended we use a Bambach saddle seat instead. 

“We came at it initially from a design perspective, but our feedback has made us realise how the Walking Wheelchair can positively impact posture and bowel movement, we’ve realised the benefit it could have on people’s needs. 

“It has been brilliant to work on this with Jarvis, we’ve both really enjoyed it, and it has turned into something which we hope will make a difference. Now, we are looking for a company who will add our product to their range.”

While the Walking Wheelchair was due to be unveiled at Naidex 2020, which was cancelled due to the COVID-19 pandemic, Suzanne says the extra year has been both helpful but frustrating. 

In the past year, the invention won the product design category of the international Dezeen Awards, and was named a finalist in the international Intelligent Design Awards, having been nominated by the British Design Fund. 

“In some ways we lost a lot of time, but in others we were able to gain momentum through the awards and we got a bit of national press too. We’re keen to make up for lost time and are looking forward to meeting people at Naidex and to hopefully finding a company to work with,” says Suzanne.  

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