ALS ice bucket challenge raises awareness in the right places

As of Sunday morning, the ALS Association of the US reported $88.5 million in donations compared to $2.5 million during the same period last year. A fund-raising success, the ice bucket challenge became an internet sensation attracting attention from all over the world… not least Malta.

There still remain the critics who believe the challenge is narcissistic or only serves “to waste water”. But the huge funds collected will go towards enhancing research for the Amyotrophic Lateral Sclerosis (ALS), the lethal neurodegenerative disorder, also known as Lou Gehrig’s disease.

It is believed that in Malta there are at least 15 people suffering from the rare disease and the Malta Hospice Movement has provided support to 13 ALS sufferers.

According to co-founder Rennie Zerafa, Puttinu Cares Foundation collected between €700 and €1,000 through donations believed to have been inspired by the challenge. Opposition leader Simon Busuttil was one of those who chose to donate €100 to the foundation, forfeiting his first challenge.

But the ALS ice bucket challenge also served to create awareness about the support given by the Malta Hospice Movement.

“We don’t know how many of the donations that came in during the past days were actually inspired by the challenge. But definitely we had a spike in calls by relatives or patients who did not know that we provide care services to ALS sufferers,” Care Services manager Anna Zammit told MaltaToday.

“Those who contacted us told us they learned about our services from the ice bucket challenge.”

Zammit said there could be patients who would be reluctant to seek help but the awareness raised could have encouraged them.

The Malta Hospice Movement is today caring for over 900 patients and their families. Most of the patients have cancer while a small number have motor neurone disease and respiratory disease.

ALS is a rare condition that eventually also affects speech and food intake. The professional team of doctors, nurses, social workers, physiotherapists, chaplain and the day therapy unit offer support and respite care to both the patients and the family or carers.

The Malta Hospice Movement also provides ALS sufferers with equipment – such as beds and wheelchairs – due to mobility problems. Once a week, a professional carer visits the patient at home, allowing the patient’s relatives a short break.

“The services we offer are free of charge and we are there for both the patient and the family,” Zammit said.

The movement also provides bereavement support for the relatives.

Little is known about ALS and families who live with these conditions are very often secretive about it, anxious about the longevity of their relatives when the symptoms finally catch up, anxious about the financial wellbeing of their family when the breadwinner is rendered totally disabled.

Robert Arrigo: Do it for the cause, not for the fun

“The initiative of raising money for the research of a disease, commonly called motor neurone, is only surpassed by the same awareness campaign that has gripped the world, including Malta.

“However do not participate and nominate people just out of fun, or plain strategic marketing.  Do it because there is a cause behind it.

“Having seen my father suffer from this disease, which can linger on for years, is no party.  In fact it is a lot of suffering on the part of the victim that contracts the disease – a one in a million possibility.”

The disease attacks the person’s nerves, gradually works itself up the body, starting from the feet, going through wherever it finds nerves, and breaks these down to simple useless chords. The tongue is the last of the organs that lets go and the patient eventually swallows the tongue, and stops breathing.

The brain, on the other hand, is clear until death.

“My father passed away 22 years ago when the disease was still unknown. A known consultant, after a conference in Geneva, recognised the symptoms.

“One can hardly describe the suffering that the victim has to go through, seeing the body deteriorate and degenerate in such a manner. The immediate family is hard hit too. Life changes in no uncertain manner, as proper comfortable surroundings must be created and kept, as the disease unfolds, till its final victory.

“At the moment I am informed that tests are still ongoing and no cure, if ever found, is in sight. Hence the importance of real donations to this cause, as the final victory by humanity on such a disease, is a world achievement.”