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  1. Biff

    Biff Cheep not easy

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    On that note night guys or good morning Mark :thumbsup:
     
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    • Mark Wainwright

      Mark Wainwright Well-Known Member

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      What do you pay for Premium gas Fred. We pay between 1.17-1.25 or higher a litre.
       
    • Mark Wainwright

      Mark Wainwright Well-Known Member

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      I'm proud of you Fred for doing what you did for your family. Some guys would have left and never looked back.
      It's the same when you have a child with a disability. One of the parents will leave as they can't handle it which puts extra burden on the other parent.
      My second cousin in the U.K. has Downs and his father was so embarrassed he left my cousin and the other two kids and has never been in touch since. that's over 45 yrs ago. David didn't ask to be born that way but it happens.
      Kudos to you my friend and proud to call you my friend. Too bad there aren't more out there like you
       
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      • Mark Wainwright

        Mark Wainwright Well-Known Member

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        Did the witch come back Biff? Can't remember if you had posted that before or not.
         
      • Mark Wainwright

        Mark Wainwright Well-Known Member

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        Yeah morning guys. Hope everyone had a good night and not up too many times to pee lol. Just once for me last night anyway lol
         
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        • Mark Wainwright

          Mark Wainwright Well-Known Member

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          There was a beautiful story on the news last night. This little girl has a very rare disease which if not taken care of before the age of 2 will cause devastating result and even death.
          There is a med that can start the reversal procedure and can life a near normal life.
          The one injection is and I believe I have the figures correct is 3 million bucks. They started a go fund me for her and someone out west donated to help with the costs.
          image.jpg
          TORONTO -- A little over a year ago, the idea of raising US$2.125 million to receive the “world’s most expensive drug” for baby Eva Batista seemed impossibly daunting for her family. But thanks to generous donors, including a fellow fundraiser, Eva’s parents are elated she will have the necessary funds to get the lifesaving gene therapy treatment she needs.

          Eva, who turned one in August, has spinal muscular atrophy (SMA), a rare neuromuscular disease that causes muscle weakness and atrophy. Basic mechanisms like breathing, which requires the diaphragm to contract, becomes a matter of survival. Many patients like Eva, who has Type 1 -- which are when symptoms are present either at birth or before they are six months -- do not survive past two.

          This month, the family announced on their GoFundMe page and Instagram that they officially met their $2.8-million goal to get Novartis’ Zolgensma, a single-dose gene therapy for babies under the age of two with SMA.

          “We are so thankful for each and every single one of you who donated, who helped share our story,” Eva’s mother, Jessica Batista, said on an Instagram video posted on Oct. 11. The Batista family could not be immediately reached.

          “We are definitely, extremely grateful for a beautiful family in Vancouver who was fortunate enough to win the (Novartis) lottery, but generously helped us with finishing our campaign and helping us reach our goal to obtain Zolgensma.”

          Novartis launched a global lottery system at the start of the year to give the drug for free in a “random allocation process” every two weeks, with the goal of giving 100 doses of Zolgensma around the world by the end of 2020.

          The drug is available in the U.S., Japan and European Union, but is still waiting for approval from Health Canada, where it has a “priority review status.” The drug works by replacing a defective gene that causes SMA.

          In the meantime, Canadian infants who need the drug must either fundraise, hope they can get it free through the Novartis lottery, or wait for Health Canada approval. But a government green light is a time-consuming process that may be too slow for infants since the drug is only for children under the age of two.

          WINNING THE LOTTERY

          The Van Kendall family in British Columbia had also been fundraising for their daughter Lucy, who also suffers from SMA Type 1, when they found out in August that Lucy was randomly selected to receive Zolgensma in the global lottery.

          The family had already raised almost $2.5 million by that point, according to their GoFundMe tally. After offering a refund to donors, the family decided to donate the bulk of the funds to seven Canadian babies also suffering from SMA Type 1. Their donation was able to complete Eva’s fundraising campaign.

          “We know these donations alone are not enough to get them all Zolgensma right now but we will be able to finish Eva Batista fundraising campaign,” the family posted.

          Lucy, who was born in April and diagnosed a month later, has since had her single dose of Zolgensma treatment. Despite some “ups and downs” the family shared online that Lucy made significant strides, including being able to hold her head up briefly for the very first time.

          “We are working on sitting and rolling...We know it will be a long road from here but we are so encouraged by her progress,” the family wrote on their GoFundMe site.

          As for Eva, her parents say she will get the treatment at Sick Kids hospital in Toronto, but no date was available yet.
           
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          • Mark Wainwright

            Mark Wainwright Well-Known Member

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            There are 3 Walmarts all in close proximity that some idiots have gone in and set the shelf of toilet paper on fire. What kind of braindead people do we have out there anyway?
             
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            • Fred Scigliano

              Fred Scigliano Lots of money

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              Not sure Mark don't even look anymore but about $2.50 a gallon for 91 octane.
               
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              • Mark Wainwright

                Mark Wainwright Well-Known Member

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                So we pay say 1.19 a litre times 4 (The equivalent of the U.S. gallon) so we're paying 4.86 a gallon. Most of it is taxes (about 34%) We pay a lot of tax but then we get free medical etc. and covers the politicians wages and pensions they get for life. That makes me feel better NOT!!!!
                 
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                • Fred Scigliano

                  Fred Scigliano Lots of money

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                  Sad story but looks like a happy ending.
                  Nice to see caring people.
                   
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                  • Fred Scigliano

                    Fred Scigliano Lots of money

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                    Kinda like getting bent over every time you fill with gas.
                     
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                    • Mark Wainwright

                      Mark Wainwright Well-Known Member

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                      With sand in the vaseline
                       
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                      • chryslerfat

                        chryslerfat Well-Known Member

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                        We have idiots here that are all for free shit that the Democrats are offering and dont understand that it is not free someone has to pay for it in the end.
                         
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                        • chryslerfat

                          chryslerfat Well-Known Member

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                          Mornin Fred and Mark
                           
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                          • Fred Scigliano

                            Fred Scigliano Lots of money

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                            Brain dead is right doing something like that, I'm surprised there bright enough to strike a match.
                             
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                            • Fred Scigliano

                              Fred Scigliano Lots of money

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                              Morning CF.
                              Nothing is free when it is a hand out from the government.
                               
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                              • Mark Wainwright

                                Mark Wainwright Well-Known Member

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                                I know one thing. I'll be glad when your election is over. We get coverage here and sick and tired of it but would be the same if we had an election coming up here. We just missed having an election yesterday. Nobody wants an election at anytime, they are so costly but it does give you a voice to what is going on. Most of the time it's all lies and unkept promises anyway.
                                 
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                                • Mark Wainwright

                                  Mark Wainwright Well-Known Member

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                                  Morning CF. Have you got the fields all done now?
                                   
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                                  • chryslerfat

                                    chryslerfat Well-Known Member

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                                    How do people not question motive when a man spends 300 million to get a job that pays 1 hundred thousand.
                                     
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                                    • chryslerfat

                                      chryslerfat Well-Known Member

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                                      2 wagons to haul in this weekend and put the machinery away then its wrapped up.
                                       
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                                      • Mark Wainwright

                                        Mark Wainwright Well-Known Member

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                                        Splain it to me Lucy..Splain it to me
                                         
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                                        • Mark Wainwright

                                          Mark Wainwright Well-Known Member

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                                          You'll be glad that's all finished.. Did you get a good price for your yield?
                                           
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                                          • chryslerfat

                                            chryslerfat Well-Known Member

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                                            Yes the best in 5 years
                                             
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                                            • Mark Wainwright

                                              Mark Wainwright Well-Known Member

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                                              Here's something to make you all laugh. So cute and so innocent
                                              73321723_2779864695377546_4627974471444070400_n.jpg
                                               
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                                              • Mark Wainwright

                                                Mark Wainwright Well-Known Member

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                                                Fantastic!! Is that because of all the rain CF? Or did you get a lot of sun?
                                                 
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