Thursday, August 21, 2014

Would an online registry of cures and/or potential cures for every disease, change the outcome for many? That is our hope.

I've started the petition "United State Surgeon General: Create an online registry of cures and/or potential cures that is made available to the public." and need your help to get it off the ground.

Will you take 30 seconds to sign it right now? Here's the link:

Here's why it's important:

Do you believe there are cures that we know nothing about for the many diseases out there? We have unbelievable technology with new discoveries and advances every day. Heck, we put the first man on the moon in 1969, and with that intelligence 45 years ago, I find it very hard to believe that we cannot find cures for every single disease within the human body. I know I am not alone in this thinking.

Every day children and adults are diagnosed with medical conditions. When that happens to a loved one, the gut reaction kicks in and you want to research everything about the disease or condition – symptoms, causes, treatments, side effects and cures. But all too often, we cannot find information for cures, even if they exist. So what are we to do? How do we go about finding information on cures, or the potential for them, in order to make the best and most informed decisions? While we can rely on medical professionals for their opinions, we are left with the idea that there is still more to know.

I, too, have been personally affected by disease within my family. I felt helpless, but had to do something. My sister Tracy had a rare brain tumor, and like Tracy and me, there are billions of people affected by disease and other medical conditions.

People dealing with disease should not have to worry that they haven’t been given all the information. A solution is to make sure everyone has equal access to information via a cure registry because, as we all know either from personal experience or the experience of a loved one, a cure is the #1 wish list item for anyone with a medical condition.

An online registry of cures and/or potential cures will bring us a step closer to fulfilling this wish. We believe a nonpartisan committee, guided by legislation, should build an online, transparent, cure registry to which everyone will have access. The registry would be a place to see what cures are currently available or those that have been approved as well as those not yet approved, but hopefully would be at some point in the future.

We reach out to you in this petition so that you can help us in letting our governments know that we want information, that we have the right to this information, and that we have the right to make informed medical choices for ourselves. A cure registry is much needed and should be something that is protected by legislation and governed by a non-political or non-partisan committee. We seek 100% transparency so it is an even playing field for everyone to have all the information about the cures and potential cures that are available.

Had a cure registry been available when my sister Tracy was battling her rare brain cancer, Mesenchymal Chondrosarcoma, I could have searched and found any possible cures or treatments in progress around the country. Instead, I spent many hours calling and emailing medical institutions across the nation trying to find someone, anyone, that had treated this rare cancer with no luck and Tracy eventually lost her battle. If a cure registry had been in place at that time, I could have searched and found this information within seconds and Tracy could have had other options, and perhaps she could still be with us today.

An online cure registry, developed as a searchable database, would give us a way to see the progress behind finding cures. With a nonpartisan committee and legislation in place for transparency, we would demand for ourselves and for our loved ones, the possibility that cures be given a chance and not be hidden or squashed by greed any longer.

I know firsthand, when you want or need to change something in this world, passionate people will do anything to help their loved ones, and then mountains can be moved. And we know this task will be like moving Mount Everest, but with your help in signing and sharing this petition, together we can take on this huge mountain. Then everyone will have access to information about available cures.

Thanks for your support! 

You can sign my petition by clicking here.
Smiles, Jackie Waters                                                                                                    

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