How £513,000 is supporting 21 MS organisations through the pandemic

At the end of 2020, MSIF awarded £513,000 to 21 MS organisations to support them in maintaining essential programmes, projects or activities during the pandemic. The COVID-19 Response Initiative grants helped organisations start or adapt projects, and prepare for growth during COVID-19 and beyond.

Six months after being awarded the grants, MSIF caught up with the recipients to find out how their initiative-funded projects have progressed.

Esclerosis Múlitple Argentina has used the grant to contribute towards office costs and staff salaries. A fully staffed team were able to respond to the growing increase in requests for support, with up to 1,970 queries in the first five months of 2021 compared to 777 in 2020. Esclerosis Múltiple Argentina is now working on a volunteer programme to help them follow up with the enquiries.

Österreichische Multiple Sklerose Gesellschaft (Austria) is using the grant to cover its Fundraising Project Manager’s salary this year. With the Manager in place, the organisation has started to prepare for a national campaign from November to December, as well as investing in online fundraising via Facebook and Instagram.

MSIF’s member in Belgium split its grant between the Nationale Belgische Multiple Sclerose Liga’s e-learning platform and the Ligue Nationale Belge de la Sclérose en Plaques’ respite care activities. The e-learning platform, whilst still under development, will enable volunteers to undertake tailored training courses to help them develop in their roles. The respite care activities focus on boosting the mental health and wellbeing of people affected by MS and reducing isolation.

The grant awarded to the Associação Brasileira de Esclerose Múltipla (Brazil) is contributing to salary costs for a team of psychologists, physiotherapists, psychiatrists and neurologists to run the organisation’s online neurorehabilitation programme. The programme has enabled the team to overcome geographic, social and economic barriers and reach over 800 people with MS throughout the country, including the North and North East regions farthest away from the organisation’s São Paulo base.

The Cyprus Multiple Sclerosis Association has used its grant to contribute to the salaries of their social workers, psychologist, kinesiologist and physiotherapist. This has enabled them to continue to provide a wide range of services to members and their families.

The Ligue Française contre la Sclérose En Plaques (France) is using its grant to develop and diversify the organisation’s fundraising programme. With a fundraising staff member now in place, the grant will also be used to contract a fundraising expert to work on both direct and legacy fundraising for the organisation.

In Germany, the Deutsche Multiple Sklerose Gesellschaft Bundesverband e.V’s Awareness-Coach Programme continues to be developed with the support of a Response Initiative grant. The programme will complement the organisation’s existing MS connect platform, enabling people with and affected by MS to access online coaching on the topics of relaxation, exercise, nutrition and self-management. This will be particularly beneficial to those living in rural areas or with limited mobility.

The Greek MS Society’s Personalised Parent Counselling Program has now finished, with their grant supporting the salary and equipment costs for the staff and health professionals involved. 38 families participated in the online programme, designed to help parents or siblings of children/teenagers with MS manage challenges that a young person with MS may face, and its impact on the family dynamic. A series of free videos and guides was produced to reach beyond those involved in the programme. Its success has led to the organisation considering how best it can expand the programme in the future.

An online platform and digital skills programme is being developed by the Hellenic Federation of Persons with Multiple Sclerosis in Greece with the grant. The organisation has purchased a number of tablets so their branches can participate in a digital training series, on topics such as using the internet and social media safely. Increasing digital literacy is key for the organisation and its members, not only in the way that it communicates but in supporting people affected by MS to access and navigate online information and appointments.

Asociación Guatemalteca de Esclerosis Multiple (Guatemala) has used its grant to cover the salary of its Executive Assistant and the office rent. This means that during such challenging times, people affected by MS can still connect with the organization – something they often depend on for information and guidance.

The Multiple Sclerosis Society of India has used part of its grant to recruit local and national staff. As a result, the chapters in Kolkata and Indore have not only been able to maintain their services but also increase engagement with decision makers in the states. The National Communication & Campaign Manager has already made significant progress in increasing the visibility of MSSI through its website, Facebook and Twitter channels. The National Coordinator for COVID-19 has distributed bursaries for 52 children to remain in school. The bursaries, also supported by the grant, have been essential for people with MS and their families who cannot afford to keep their children in school when struggling to pay MS-related expenses.

With its grant-funded Digital Fundraising and Marketing Executive now in place, MS Ireland has begun to add a digital element to a number of its campaigns. This includes targeted LinkedIn campaigning to keep the organisation’s Care Centre open, and mapping donor journeys through Facebook fundraisers. The Executive will be working with MS Ireland’s branches during the summer to build their online fundraising capacities.

The Latvijas Multiplās Sklerozes Asociācija in Latvia used the grant to purchase laptops and equipment to enable their regional branches and board to work remotely. Video conferences have been held for members, keeping them informed and engaged without them needing to leave their homes. On World MS Day, an online event involving a number of neurologists attracted people affected by MS outside of the organisation’s membership, as well as family members and health professionals. The organisation has also benefitted from being able to link up with and participate in online events organised by other health NGOs in Latvia.

With the support of the MSIF grant, Lietuvos Išsėtinės Sklerozės Sąjunga (Lithuania) also purchased computers to enable volunteers in their regional associations to work remotely. The grant also contributed to the salary of a psychologist so the organisation could increase its provision of online support to its members. A portion of the grant covered the costs of training sessions in counselling and psychological support attended by groups in five regions. The sessions included topics such as self-care, keeping active and sharing experiences.

In the first half of 2021, the National Association for MS (North Macedonia) held 117 sessions as part of its psychological and psychotherapeutic support for people with MS project, part-funded by an MSIF grant. Working with a group of psychologists with experience in supporting people affected by chronic diseases, the project was positively received, so much so that the organisation hopes to continue expanding the service in the future.

Part of the Polskie Towarzystwo Stwardnienia Rozsianego (Poland) grant has contributed to the salary of staff working on the MS Helpline. Given that many people have been unable to access their neurologist during this time, the helpline has proved a vital source of support and advice. The grant has also supported staff running the organisation’s communications activities, enabling them to ensure that their website and social media channels contain relevant, up-to-date evidence-based information.

Sociedade Portuguesa de Esclerose Múltipla (Portugal) has developed its EM’REDE (MS networking) project with the support of the grant. Through this digital platform, approximately 160 online sessions have been held so far for individuals and groups in psychology, social support, cognitive stimulation and rehabilitation. In addition to these, 22 sessions have been broadcast live through the organisation’s social networks on themes including mental health and mindfulness, the rights of people with disabilities and independent living. The project has been met with high levels of satisfaction and has enabled the organisation to alleviate social and physical isolation by reaching people affected by MS living in smaller cities and rural areas.

The grant awarded to Asociación Española de Esclerosis Múltiple (Spain) is being used to contribute to staff and health professional costs related to the Home Help Programme carried out by the organisation’s local branches, as well as associated personal protective equipment costs. Organisations including those in Santiago de Compostela, Madrid, Castilla y León, and Murcia have been able to offer therapies in a safe environment to those unable to leave their homes.

Esclerosis Múltiple España (Spain) is using the grant to support its member entities transform face-to-face services into a digital format. The organisation is currently analysing the needs and proposals submitted by the entities before awarding grants for this transformative work.

The grant awarded to the Schweizerische Multiple Sklerose Gesellschaft (Switzerland) has enabled specialised staff to carry out home visits and phone consultations with isolated people with MS. During the first six months of 2021 more than 100 house visits and over 2,500 phone and video calls were made. The feedback has been very positive: ‘I would like to thank you again very much for all your help and support… a sense of security, stability, reliability and warm feelings in my heart, which always puts me at ease’.

By supporting the salary of its Executive Assistant, and contributing towards office costs, the grant has enabled Association Tunisienne des Malades de la Sclérose en Plaques (Tunisia) to continue supporting the MS community with virtual conferences, video sessions and a virtual World MS Day event. The organisation was also able to petition for MS to be included in the list of those prioritised to get the COVID-19 vaccine.