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100 People To Support LSD Ice Bucket Challenge6 September 2014
6 September 2014
Currently, "Ice Bucket Challenge" is becoming popular throughout the world. It success aroused the awareness of rare diseases specificly ALS (Amyotrophic Lateral Sclerosis), so donations will be able to fund research work of the disease and provide important support and care services for patients and their families.
This event with the help of social media had reached millions of people. As of 26 Aug, ALSA US has announced a total of USD 88.5 million total donation received from existing and new 1.9 million donors in very short time. It is such huge jump as compared to the last year donation of USD 2.6 million. It was such encouraging news for us, we are happy for ALSA and hope the donation will continue to flood in so that it will bring in enough fund for them to work out with pharma companies and scientists for a cure to the devastating disease. For ALS Ice Bucket Challenge, we see the power and the strength of the public…
Fighting ALS with no known cure is both frightening and frustrating where the body will be paralyzed completely but their minds remain sharp and alert. Fighting LSD is no better. For LSD patients, some of the diseases have available treatment but no one can bear the cost of the treatment on his own. We are not looking at thousands, we are not looking at ten thousands, nor we are looking at hundred thousands, the medical bill is at the average of RM 1 million a year. And the treatment is life long, meaning that each patient will need RM 1 million every year. Without the treatment, the patients will have multiple degenerating body functions, they will die slowly in pain.
When we looked out of Malaysia, there are many patients that are out there sharing the similar fate. Many are getting the treatment around the world. No one is funding their own medical bill. Then who is paying for their bill? The answer is the government. Developing countries like Chile, Brazil, Mexico, Libya are providing this medication to their citizen as none of the normal family could afford. Only the government has the ability to pay the bill long term, in Malaysia, we do not have National Health Care Policy, hence LSD children right for the treatment has been compromise.
Don’t get us wrong, we are not saying our Malaysian government is not doing their job. We are grateful that our government is funding for ERT. But we just want to bring to everyone attention that what we are getting RM 8.5 million a year from our government is not good enough to save our patients. We have 15 of the patients getting the treatment, 3 dropped out for different reasons, now we have 12 patients sharing the budget for many years. The dosing for some of the patients no longer suffice with the allocation as our children are growing up.
Nevertheless, we have 20 new patients that are waiting to be treated. Some have been waited for years, however the budget stopped at RM 8.5 million. Those awaiting for treatment continued to wait, but how long more can they wait? Almost every one in the queue is experiencing different degrees of degradation of the body, it does not seem to be fair for them to keep on waiting.
Come back to why Ice bucket challenge, cause we see our LSD patients sharing the same fate as ALS. There is treatment but they just can’t get access to it, it is just as good as there is no treatment. We hope ice bucket challenge will shine some light to these less fortunate families…
If one person start this ICB, it will takes 12 level to reach 200,000 people. but if 100 person to start this ICB, it will takes 7 level to reach 200,000 people. Imagine each one of them donate RM 100, then we can raise RM 20 Mil to save 20 patient life. Challenge or not challenge has become secondary issue, most importantly we have to find this 200,000 people, We shall tell our nominees on this and remind them to keep on telling their next nominees why we need to do this to save these children even though they didn’t take up this ICB.
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