Possibly a bit of a rant here, but never know what words I will type out when I have some fire in me..
So I noticed the petition for NurOwn UK (the only drug that seemingly has reversed ALS/MND symptoms of those suffering in the U.S- those who were wheelchair bound have been seen to walk again) has expired on 19th September. The petition only had approx 65,000 signatures when it needed 100,000 to be discussed in parliament. These petitions last for 6 months. I'm gobsmacked that this never got the 100,000 required!!
So then I go onto social media today to see a new petition, although completely unrelated (as you can petition anything by the looks of it)....a petition to allow more than 15 to attend a wedding due to the newly imposed lockdown restrictions. Now I always have to take a step back and a deep breath. I understand that grief is relevant to what you have experienced in your lifetime and the cancellation of a wedding that has been in the planning for some may be the biggest grief they've experienced, the expense, the business for caterers/florists/venues, the emotion etc. But at some point you just think....hmmm if that petition can get to 100,000 (not yet but I just know it will somehow considering it's at 45,000 in its first week) and it's a petition not involving life or death, then how the heck can't a treatment to try to save and prolong lives not get the interest!
Sweeping statement here, but is this due the general demographics of those who are affected by MND? Computer literacy? (yet I still see so many individuals of all ages on this forum) Is this due to the lack of knowledge/leap of faith in the NurOwn trial? Is there not enough publicity around MND in general? I'm so confused.
One day I sit and think realistically, that we know there won't be a cure in our lifetime so no point wasting energy on it and the next day I think why should I sit and let that be the case, I should be more proactive about this for my partner.
What are peoples thought on the petition expiring? Should we start the petition up again? Is it worth it? Am I on to plums?
Tess
x
So I noticed the petition for NurOwn UK (the only drug that seemingly has reversed ALS/MND symptoms of those suffering in the U.S- those who were wheelchair bound have been seen to walk again) has expired on 19th September. The petition only had approx 65,000 signatures when it needed 100,000 to be discussed in parliament. These petitions last for 6 months. I'm gobsmacked that this never got the 100,000 required!!
So then I go onto social media today to see a new petition, although completely unrelated (as you can petition anything by the looks of it)....a petition to allow more than 15 to attend a wedding due to the newly imposed lockdown restrictions. Now I always have to take a step back and a deep breath. I understand that grief is relevant to what you have experienced in your lifetime and the cancellation of a wedding that has been in the planning for some may be the biggest grief they've experienced, the expense, the business for caterers/florists/venues, the emotion etc. But at some point you just think....hmmm if that petition can get to 100,000 (not yet but I just know it will somehow considering it's at 45,000 in its first week) and it's a petition not involving life or death, then how the heck can't a treatment to try to save and prolong lives not get the interest!
Sweeping statement here, but is this due the general demographics of those who are affected by MND? Computer literacy? (yet I still see so many individuals of all ages on this forum) Is this due to the lack of knowledge/leap of faith in the NurOwn trial? Is there not enough publicity around MND in general? I'm so confused.
One day I sit and think realistically, that we know there won't be a cure in our lifetime so no point wasting energy on it and the next day I think why should I sit and let that be the case, I should be more proactive about this for my partner.
What are peoples thought on the petition expiring? Should we start the petition up again? Is it worth it? Am I on to plums?
Tess
x
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