MNDA South Africa

Motor Neurone Disease/Amyotrophic Lateral Sclerosis Association of South Africa (MNDA of SA)

The MNDA of SA’s mission statement is: ‘To provide and promote the best possible support for people living with motor neurone disease, their families and carers and to raise public awareness.’ The MNDA is an audited, non-profit organization (NPO 155-413) registered in 2015 but operating from 1993 when this incurable disease (involving the progressive degeneration of the motor nerve cells in the brain and spinal cord controlling muscles for movement, speech, swallowing and breathing) became more widely known in SA. Funded solely by private donations, bequests and voluntary fundraising activities, the association’s small team consists of an office administrator and eight home-based advisors covering SA’s main regions. The advisors regularly visit or call officially diagnosed patients on our records from all income groups, races and cultures, providing advice and help with equipment, aids, homecare and any other practical, psychological and emotional support required by patients, their families and carers.

Our Top 3 projects:

Patient support:

Regular home visits, telephone calls, support group meetings, hospital clinics attendance, and sourcing and lending aids and equipment, from disease onset/diagnosis until the end of the patient’s life.

Data capturing and information gathering:

The office administrator keeps up-to-date records and progress reports of all listed patients as a source of statistics and information for medical research (Tygerberg and Groote Schuur), a support for advisors and a communication tool with patients and families through emails, telephone calls and a quarterly newsletter.

Fundraising:

With no state support, income is automatically generated through donations, bequests, a small (R200) patient/family membership fee and private, individual fundraising drives, all of which is voluntary.

Needs:

A more regular income

An experienced, dedicated, commission-based fundraiser

Specific equipment and aids for loaning to patients

Statistics:

MND/ALS most commonly affects those in the 40 to 70 year age group.

The incidence (new cases during a defined period) is 2 per 100 000 of total population.

The prevalence (number of cases at any point in time) is 6 per 100 000 of total population.

On average about 250 patients are registered with the MNDA of SA at any given time (246 in June 2018).

Life expectancy on average is between 2 and 5 years from onset of symptoms.

Success Story:

MND being an incurable, progressively debilitating disease, success stories are about the extent to which the lives of patients and their families/carers are eased in physical and emotional ways through providing aids, equipment, advice and support and helping create a network of knowledge and care.

An example:

Anne Moolman of Port Elizabeth has been living with MND since 2012 after an early diagnosis following investigation of a weakness in her left hand. At the time still an independent working woman, she immediately joined the MND Association. The MNDA has been walking the difficult road with her and her husband Philip as she lost her mobility, supporting the couple with information, practical advice and aids and equipment to ease Anne’s life. In recent times, a hospital bed, hoist and sling, the costs not covered by medical aids, have been financed by the association thanks solely to the ongoing funding the MNDA receives via private donations, bequests and a small annual voluntary membership fee.

Linda Stewart of Hillcrest, KZN, lost her husband Gary (one of our patients) to MND in November 2016. She subsequently donated her husband’s communication device, a Tobii eye tracker, to the MNDA, which, with the help of our Durban-based advisor could be loaned to Kirsty-Leigh Carazzo of Ballito, an unusually young patient in her 20s. Linda accompanied our advisor to help set up and acquaint Kirsty-Leigh with the device.

MNDA contact person/s:

Office manager: Wendy Toerien

Tel: 021 531 6130

Email: mndaofsa@global.co.za

Vice-chair and advisor: Sheila Kendal Slabber

Tel: 072 326 4477

Email: sheila.mnda@global.co.za

Physical address:

MNDA of SA

WBHO House Office G02

Glen Roy Rd

Pinelands