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ALS Gene identified, hope MS is next

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    ALS Gene identified, hope MS is next

    All the money raised from the ALS ice bucket challenge really paid off. They have identified a gene can take the next steps to target it. We can only hope MS is next. Maybe we can borrow the ice bucket challenge...
    Kathy
    DX 01/06, currently on Tysabri

    #2
    Yes that is great but a little to late for my cousin who passed away three ago at the age of 57 from ALS

    Yes it would be great if MS was next

    Shoo
    Shoo

    Comment


      #3
      Originally posted by Shoo View Post
      Yes that is great but a little to late for my cousin who passed away three ago at the age of 57 from ALS

      Yes it would be great if MS was next

      Shoo
      So sorry for the loss of your cousin. While MS is debilitating for some, ALS is for all. I hope that it brings some comfort knowing that if any other family members carries the gene for ALS, a cure may be around the corner. I know we say that for MS, but they need to find a cause first.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        To have this happen we'd have to openly acknowledge that MS can be passed down through families and whoo-weee that suggestion can get you burned at the stake among many with MS.

        Great news for ALS though because that and Huntington's have to be the most miserable diseases on the face of the earth.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

        Comment


          #5
          DNA = Designer M.S. Treatment in the near future?

          My extended family members on my maternal side sent blood samples to the UofSF M.S. Genome Study to help scientists discover what genes might be attributed to M.S. We have so much M.S. on my mother's side that we have been labeled a "Multiple Sclerosis Cluster Family". There are several more cluster families who have also participated, and continue to participate, in this ongoing study.

          When my DNA was tested I learned that I personally carry the genes HLA-DRB1 and IL7RA which have been linked to persons with M.S. (these are just 2 possible genes, but there are others, and more to be discovered, no doubt). Having said genes does not guarantee that you will have M.S., but it is looking more and more like it increases your odds. Mixed with environmental factors - and possibly having had Mononucleosis (although I do not know anyone who hasn't had it ) could be the perfect storm that got us sick. Nobody knows for sure...all I know is that I wish I didn't tip the scale by being born with these genes!

          The DNA decoding process is still in its infancy. My hope is that we will soon be able to at least personalize our DMT treatments from the get-go by analyzing our DNA, then picking our best weapon based on our individual biology (or if treatment is even indicated at all). This certainly sounds a lot better than our current, frustrating trial and error approach!
          Tawanda
          ___________________________________________
          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

          Comment


            #6
            Originally posted by Jules A View Post
            To have this happen we'd have to openly acknowledge that MS can be passed down through families and whoo-weee that suggestion can get you burned at the stake among many with MS.
            Love the comment. I think that those who propose there may be multiple causes/triggers to MS may be right. so even if Gene found, may not be full picture. Guess time will tell. hoping in my lifetime, even if I am 90!
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Thank you Pennstater

              Thank you Tawanda and family, I hope they find something. No one in my family has MS, unless they had MS many years ago

              When my cousin was diagnose with ALS I talked to my pc doctor, he said some sytoms are the same but completely different I know my cousin was in a power wheel chair, bladder problems, and a feeding tube, and taking Bacolfen like me All those are similar to MS Should he have had MS instead of ALS we will never know

              I have been hearing there's a cure for MS for a long time When I was diagnosed 28 yrs ago the dr told me their would be a cure within in five yrs, the only thing that happened was Betaseron Did I misunderstand the dr or did he not know what he was talking about Here I am still waiting for a cause and cure It will probably happen like my cousin with ALS, as soon as I die their will be a break through

              Shoo
              Shoo

              Comment


                #8
                Originally posted by Tawanda View Post
                My hope is that we will soon be able to at least personalize our DMT treatments from the get-go by analyzing our DNA, then picking our best weapon based on our individual biology (or if treatment is even indicated at all). This certainly sounds a lot better than our current, frustrating trial and error approach!
                In psychiatry there are a companies popping up now that are attempting to identify an individual's ability to metabolize certain meds which theoretically could indicate better tolerability and possibly better outcomes. Again like you said in its infancy but it will hopefully it could give us more guidance in picking a medication rather than our current method of picking based on route, side effects etc.
                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                Anonymous

                Comment


                  #9
                  designer treatments

                  Originally posted by Jules A View Post
                  In psychiatry there are a companies popping up now that are attempting to identify an individual's ability to metabolize certain meds which theoretically could indicate better tolerability and possibly better outcomes. Again like you said in its infancy but it will hopefully it could give us more guidance in picking a medication rather than our current method of picking based on route, side effects etc.
                  We went to the the MIT college campus when we were in Massachusettes this week (already researching colleges for my daughter, but with its puny 8% acceptance, I doubt this college is gonna' ring the bell!). Anyway, there was a little museum on the edge of campus that included a dumbed-down exhibit about DNA, cancer, and how the most effective drug can be selected to treat the particular patient in need. I couldn't figure out how cancer drug research translates to M.S. or autoimmune drug research , but it was interesting all the same...
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment


                    #10
                    I had a conversation with my old neuro before he retired about the promising future of Gene specific treatment. He said it is so exciting, but also a scary path to head down. I think he was actually relieved to retire before targeted gene therapy became an everyday reality.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      Originally posted by pennstater View Post
                      He said it is so exciting, but also a scary path to head down. I think he was actually relieved to retire before targeted gene therapy became an everyday reality.
                      How mysterious! I wish he had expanded on this. Does he think we are going to turn into Incredible Hulks or something? I think in my case that would be an improvement!
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                      Comment


                        #12
                        Originally posted by Tawanda View Post
                        How mysterious! I wish he had expanded on this. Does he think we are going to turn into Incredible Hulks or something? I think in my case that would be an improvement!
                        He did say that he worried about two things:
                        1. He was worried about advances in genetics being used not for medical purposes, but to start manipulating for sports and cherry picking and not his exact words, but ordering traits in kids.
                        2. He was also concerned that as you start influencing and modifying genes, you don't really know the long term ramifications and how an individual body/brain will respond.

                        I think that was where his thoughts were. He said he was excited by the possibilities for medical advancement, just unsure of ramifications.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Originally posted by pennstater View Post
                          He did say that he worried about two things:
                          1. He was worried about advances in genetics being used not for medical purposes, but to start manipulating for sports and cherry picking and not his exact words, but ordering traits in kids.
                          2. He was also concerned that as you start influencing and modifying genes, you don't really know the long term ramifications and how an individual body/brain will respond.

                          I think that was where his thoughts were. He said he was excited by the possibilities for medical advancement, just unsure of ramifications.
                          Yes, the implications are HUGE! I have been hearing about designer babies forever...could be some out there now!

                          My RN neice is currently enroled in a PA program and her husband is an MD. They were discussing research being conducted that could result in "test-tube" babies resulting from TWO mothers. Paraphrasing here..the best of both moms' genes would be used. The junk genes, such as the ones I have that have been linkef to M.S., along the more well-researched genes for Huntingtons, BRAC 1, Akzheimer, etc., could be all get the boot before your infant takes her first breath. This use I could handle, but athletic ability? Blue eyes? That sounds like a real slippery slope.

                          Yes, exciting and scary both!
                          Tawanda
                          ___________________________________________
                          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                          Comment


                            #14
                            ALS gene

                            Originally posted by pennstater View Post
                            All the money raised from the ALS ice bucket challenge really paid off. They have identified a gene can take the next steps to target it. We can only hope MS is next. Maybe we can borrow the ice bucket challenge...
                            my dad died of ALS. i am not sure if i would want to know if i had an ALS gene.

                            Comment


                              #15
                              Originally posted by lisams View Post
                              my dad died of ALS. i am not sure if i would want to know if i had an ALS gene.
                              It would be terrifying for sure but might also offer someone guidance on whether or not to decide to have bio children and possibly pass it along.
                              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                              Anonymous

                              Comment

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