Motor Neuron Disease (MND) is one of the rare diseases which, at this stage, has no treatment or cure. According to Dries la Grange, Bestmed’s CEO, it is time for the private healthcare sector to take a stand and to work towards understanding the causes of rare diseases such as MND.
“As a medical scheme, our strategy promotes preventative healthcare, and sadly , with a disease such as MND, there are no preventative measures, as there are no identified causes. It is for this reason that we are joining hands with the J9 Foundation to show our commitment in assisting to finding a cure,” says La Grange.
The J9 Foundation was formed by rugby legend, Joost van der Westhuizen in aid of those suffering from the same form of this debilitating illness he was diagnosed with in early 2011.
Bestmed has over the past few months worked with the J9 Foundation, its service providers, and selected sports legends to produce a Public Service Announcement (PSA) that will raise awareness and educate communities. In addition, there is a call for help to public to support this campaign by donating money to the J9 Foundation in a bid to raise funds to start research on MND.
“Although our relationship with the J9 Foundation dates back over a year, we saw it fitting to join hands and involve communities, both nationally and internationally, in fighting this rare disease. As a society, we can no longer turn a blind eye to this disease,” says La Grange.
La Grange says, “With adequate funding and advanced technologies, there are dedicated professionals who are prepared to leave no stone unturned to find a cure for this disease. The PSA and the call for funding are just one step and the first to bigger things, and we urge other entities to work together on this initiative.”
Currently, MND sufferers are only treated for their symptoms as there is no cure, and medical schemes do not fund the disease as one of their chronic conditions, which is burdensome to sufferers and their familities.
Joost van der Westhuizen says in line with the purpose of his foundation, it is encouraging to have a corporate partner such as Bestmed.
“This proudly South African Public Service Announcement is the first step to greater things. We believe with the work that has been done to date, backed by this initiative, we will have opened a lot of people’s eyes and educated many people who may have not been aware of this rare disease”, says Van der Westhuizen.
The Public Service Announcement
The Bestmed/J9 Foundation collaboration will focus on bringing a public service announcement on a national and international level when the J9 Foundation embarks on an annual end of year tour with the Springbok rugby team when they take on Ireland, England Italy and Wales.
The collaboration will kick-off with a PSA and a call to action, where internationally recognised South African icons will further drive home the message. This is the first phase of the campaign, which will be launched on 15 November 2014.
What is Motor Neuron Disease?
MND is a very rare condition that affects the nervous system (neurological condition). Approximately one person in every 50,000 is diagnosed with MND each year. It can affect people of any age, but most affected people range between ages of 40 and 70 years. Out of every 10 people with MND, six are men and four women.
MND is an incurable form of progressive neurodegeneration – over time the nerves in the spine and brain progressively lose function, which results in death. In the case of motor neuron disease, motor neurons, types of nerve cells, are affected. People with MND have a life expectancy of two to five years, from day of diagnosis.
The renowned English physicist, Stephen Hawking, and guitar virtuoso Jason Becker are living with motor neuron disease. Lou Gehrig was a New York Yankees baseball player who was diagnosed with amyotrophic lateral sclerosis (ALS) in 1939 which forced him to retire at age 36 and claimed his life two years later. ALS is now commonly referred to as Lou Gehrig’s disease in America.
There are different forms of motor neuron disease:
- ALS (amyotrophic lateral sclerosis) is the most common form and accounts for approximately 60% to 70% of all cases. Known in the USA as ALS and in South Africa and the UK as MND.
- PBP (progressive bulbar palsy) accounts for about 20% of all cases.
- PMA (progressive muscular atrophy) accounts for the remaining 10% of cases.
In all three MND forms, symptoms are very similar. However, they progress at different rates. PLS (primary lateral sclerosis) is a very rare form of MND. PLS, unlike the other forms, is not fatal. In some very rare cases PLS can progress into ALS.