tag:blogger.com,1999:blog-4831070856258014656.post5577711119311487589..comments2023-10-19T12:32:04.190+01:00Comments on SMASH SMA: AN INFINITE SKY WITH INFINITE POSSIBILITIESUnknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4831070856258014656.post-3658946938856528862012-01-04T13:03:46.340+00:002012-01-04T13:03:46.340+00:00By the way, can you send me the link to the petiti...By the way, can you send me the link to the petition you want people to sign. I'd be happy to Facebook/Tweet and blog about it - and I'll get all of my family and friends to sign itDonna@MummyCentralhttp://www.mummycentral.comnoreply@blogger.comtag:blogger.com,1999:blog-4831070856258014656.post-5434128108772561712012-01-04T12:53:22.182+00:002012-01-04T12:53:22.182+00:00Spotted this through Sarahmumof3's Facebook pa...Spotted this through Sarahmumof3's Facebook page. Will also share, Tweet and do what I can to spread the wordDonna@MummyCentralhttp://www.mummycentral.comnoreply@blogger.comtag:blogger.com,1999:blog-4831070856258014656.post-27301718468208012782012-01-03T09:04:41.948+00:002012-01-03T09:04:41.948+00:00I will sign and hare with my friends and hope and ...I will sign and hare with my friends and hope and pray that SMA is given that good kicking xxSarahmumof3https://www.blogger.com/profile/03928332640674423684noreply@blogger.comtag:blogger.com,1999:blog-4831070856258014656.post-51317825524076441532011-12-23T21:26:29.702+00:002011-12-23T21:26:29.702+00:00It might be slow but you will get there. Please do...It might be slow but you will get there. Please dont give up. Your campaign has been inspirational in a short period of time. Keep believing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4831070856258014656.post-4021377574111255922011-12-23T16:31:00.531+00:002011-12-23T16:31:00.531+00:00I have had some of the same thoughts, and it is ma...I have had some of the same thoughts, and it is maddening to see the nonsense that is tweeted or posted by someone right after I have sent them a message about SMA and Estella. To me, once you read one thing or see her face, you are committed for life to trying to end this disease. There are times I want to scream and cannot stand to think about it anymore when I see her face, or the faces of baby after baby who have had this terrible disease. The fact that this is not tested for, and was not even mentioned to me, who just had a baby in September, is unbelievable. And I get so angry. But you have to chip away, day by day. There will be big days like the SMA milk donation and reaching 8000 followers (remember when you were trying for 1000?) and then days when you wonder if anyone is listening. What matters is the one person you reach who will have the effect of 100 people, and there are a lot of those out there. What matters is putting SMA in the minds of people who had never heard of it before; even if they don't don't respond it may prevent one family's pain. It will take time and people reaching out in their lives, not just online. Maybe people could collect names and emails from friends and colleagues and then sign for them, instead of asking people to sign when they get home and may forget. If I lived in the UK, I would be getting the names and emails of everyone I know! <br /><br />Anyway, that's another topic... there will be stops and starts beyond the initial outpouring of support, and it will be frustrating and take time, but you are making a difference and you won't give up. It doesn't seem to be in your nature, parents who have been so strong through so much, and you won't ever give up for her. You will find many ways to make a difference, for the rest of your lives. This is only the beginning. <br /><br />Even though it is so obvious to us, if it were easy to make this change it would have been done by now. Look at what you've done in a few short weeks and persevere, and remember you have a team with you all the way.Maryhttps://www.blogger.com/profile/13477010500739246177noreply@blogger.comtag:blogger.com,1999:blog-4831070856258014656.post-54913746768083833092011-12-23T11:10:08.626+00:002011-12-23T11:10:08.626+00:00Agreed xxxAgreed xxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4831070856258014656.post-24153837743997133652011-12-23T10:54:54.519+00:002011-12-23T10:54:54.519+00:00You are a very inspirational man, and I for one am...You are a very inspirational man, and I for one am also saddened by the lack of response by my Facebook 'friends'.<br /><br />I won't give up, and I will keep posting the petition address on my wall, and keep retweeting as much as I can. I have even put the information on my work web noticeboard.<br /><br />We WILL give SMA a bloody good kicking in the memory of a beautiful, wonderful little girl that I wish I had the honour of meeting.Anonymousnoreply@blogger.com