Stop criticising the Ice Bucket Challenge!
My advice, to those criticising the Ice Bucket Challenge for being a waste of water, is stop! Stop criticising long enough to understand the rare disease community and their struggles.
The kind of awareness ALS (Amyotrophic Lateral Sclerosis), has gotten over the past few weeks is the kind of well-deserved attention, I as someone who saw those closest to me suffer with a disease nobody knew off, could diagnose or had even heard off, wish and hope one day all rare diseases receive. People from all over the world have taken part in the campaign that has spread like wild fire. Celebrities have been partaking and contributing, children are conducting it at schools, friends have been nominating each other, and patients are rolling out on their wheel chairs to show support by pouring buckets of ice water over their heads and donating towards the cause.
My grandmother and mother had a rare genetic disorder called HD (Huntington’s Disease) and throughout their lives, we never saw a rare disease get attention as much as I have because of such campaigns and social media. We should encourage these fund raising, awareness tactics and support them instead of discouraging them. Why is there so much negativity surrounding an act like this?
The ALS community is no longer alone and rare, in fact they are rather strong. The funds will enable improved access to treatments, medical representation for individuals with these diseases and their families, awareness, public and physical education, a strong support system and a community on social media that has helped support research initiatives to find treatments and cures.
The level of research that scientists can now conduct with over $95 million in donations, that have been generously donated from all over the world with people like Stephen Hawking, a patient of ALS coming out and finally supporting this rare disease, will surely bring patients so much closer to treatments and maybe a cure one day.
For communities of rare diseases, the struggles are that they are underfunded and highly unrecognised. Due to lack of awareness, rare diseases have almost no funding and FDA approvals take years. It has been estimated that 95% of rare diseases currently have no FDA approved drugs and treatment, and for the 7000 rare diseases out there, there are currently less than 400 treatments that have been approved by the FDA.
Due to Huntington’s disease, my mother struggled her entire life, with no hope for a cure or even basic treatments being approved by the FDA during her lifetime or in the near future. Similarly, there is no cure or treatment for ALS except for one FDA approved drug, Riluzole, that only slows the progression of ALS.
We need to start pouring buckets of ice water on ourselves because according to the National Institute of Health at the current rate FDA is approving drugs it could take over 10,000 years to find therapies for all those who are suffering from rare diseases. This means that if, in the next few years, somebody from your family, friends or you are diagnosed with a rare disease, the only option you have is to suffer and spend the rest of your life hoping for a cure.
Such campaigns are the only way to speed this process up and supporting this movement is important because every time we choose not to get involved, choose not to donate to this cause and choose not to understand, we risk losing lives. 50% of those affected by rare diseases are children, which makes rare diseases even more deadly and debilitating for children all over the world.
One in ten people have a rare disease and no access to treatment, support or a cure globally. This is an alarming situation and needs attention.
Some numbers shared by the critics on Facebook state that the annual deaths caused by ALS are 5,600 and the annual deaths from having no access to clean water are 3,400,000. Individual rare diseases may have small patient population, but collectively the rare disease community is much larger than that of AIDS and cancer combined!
This campaign gives the rare community a chance to a unified voice. The success of the Ice Bucket Challenge is not just for ALS; it is of the entire rare disease community. Bringing everyone out on a common ground has given us, those suffering through it, a face. For the first time, we are not invisible to the world.
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