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Re: Mitochondrion Research Society - Long!

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  • Jeffrey Downs
    Hi, I read Dr. Zullo s post but I don t understand what is expected of us, if anything. I understood that this is an announcement that a research society for
    Message 1 of 5 , Jun 30, 1999
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      Hi,

      I read Dr. Zullo's post but I don't understand what is expected of us, if anything. I understood that
      this is an announcement that a research society for mito disease has been started but that is all I read
      into the announcement.

      Did I miss something? Are they asking us for info on our families? I don't know what they are looking
      for. I am most certainly willing to help but I don't know what they want.

      Can someone clarify what this message from Dr. Zullo means?



      Jean & Frank Shepherd wrote:

      > From: Jean & Frank Shepherd <shepherd@...>
      >
      > Every now and again something exciting happens in the mitochondrial
      > circles. This is new and in my opinion exciting. Frankly, I was
      > surprised that so *LITTLE* attention was paid to either the announcement
      > or my response to it. For some of you, this doesn't apply, if you
      > aren't a member of Mito LIst!

      <snip>
    • mprosser@xxxxx.xxxxxxxxxxxxxxxxx)
      I printed the into and took it to my doctor today. He will also pass it on to his partners. Mary
      Message 2 of 5 , Jun 30, 1999
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        I printed the into and took it to my doctor today.
        He will also pass it on to his partners.

        Mary
      • Dr. Steven J. Zullo
        Dear Mr. Downs, You are exactly right, nothing is expected of you. We asked that the intro letter be forwarded to the lists for informational reasons, to
        Message 3 of 5 , Jun 30, 1999
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          Dear Mr. Downs,
          You are exactly right, nothing is expected of you. We asked that the intro letter be forwarded to the lists for informational reasons, to alert the community of what is going on in the research community. While research into mitochondrial functioning has been conducted for quite some time, it is only in the relatively recent past that the importance of mitochondrial function (or dysfunction) in many human maladies has been realized. That includes disorders not commonly associated directly with mitochondrial integrity. One major funding source for medical research in the USA is of course the NIH, and NIH priorities are generally mandated by the US government, the people, through senators and congresspersons. In fact, most of the buildings on the NIH campus in Bethesda that have names are named for senators and congresspersons who were/are ardent supporters of NIH.
          One important statistic to which all with confirmed or suspected mitochondrial dysfunction (mtDNA- or nuclear DNA-mutations) should contribute (anonymously or not) is the incidence of such disorders. This frequency is important because research into treatment often requires representative sample sizes, and the frequency of the disease may be needed to determine the sample size. I am not sure if the CDC in Atlanta maintains these data, we have just started to investigate this. Keep the faith is what we wish all to do, and follow your heart.
          Best Regards,
          Steve Zullo

          Steven J. Zullo, PhD
          Bldg. 10 Room 2D56
          NIH
          Bethesda, MD 20892
          301-435-3576 FAX: 301-480-9862
          zullo@...
          New Mitochondria Interest Group Web Page:
          <http://www.nih.gov/sigs/mito/>
          First generation Mitochondria Interest Group Web Page:
          <http://www-lecb.ncifcrf.gov/~zullo/migDB/>


          -----Original Message-----
          From: Jeffrey Downs [SMTP:jdowns@...]
          Sent: 30 June, 1999 8:47 AM
          To: Mito@onelist.com
          Subject: Re: [Mito] Mitochondrion Research Society - Long!

          From: Jeffrey Downs <jdowns@...>

          Hi,

          I read Dr. Zullo's post but I don't understand what is expected of us, if anything. I understood that
          this is an announcement that a research society for mito disease has been started but that is all I read
          into the announcement.

          Did I miss something? Are they asking us for info on our families? I don't know what they are looking
          for. I am most certainly willing to help but I don't know what they want.

          Can someone clarify what this message from Dr. Zullo means?



          Jean & Frank Shepherd wrote:

          > From: Jean & Frank Shepherd <shepherd@...>
          >
          > Every now and again something exciting happens in the mitochondrial
          > circles. This is new and in my opinion exciting. Frankly, I was
          > surprised that so *LITTLE* attention was paid to either the announcement
          > or my response to it. For some of you, this doesn't apply, if you
          > aren't a member of Mito LIst!

          <snip>


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        • Laurie
          Jean- Thanks for being mama bear!!! We need to hear such things once in awhile. Thanks for sharing your posts to these two gentlemen and their responses. I am
          Message 4 of 5 , Jul 1, 1999
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            Jean-

            Thanks for being mama bear!!! We need to hear such things once in awhile. Thanks for sharing your posts
            to these two gentlemen and their responses. I am really excited about the idea of a specific journal. It
            is really needed.

            Now, I did do my part a little bit. I did send my backgrounder to the local paper and have now been
            interviewed and photographed (and I don't like having my picture taken).

            I have also copied the post about the society to give to my neurologist.

            So please stop slapping my hands now, they have had enough. <grin>

            Really I do think we all need to do our part in moving information and ideas and then taking action. The
            fellow who interviewed me asked me specifically for an address that people could send money to if they
            wanted to help with research. I gave him the umdf info.

            Laurie

            > Every now and again something exciting happens in the mitochondrial
            > circles. This is new and in my opinion exciting. Frankly, I was
            > surprised that so *LITTLE* attention was paid to either the announcement
            > or my response to it. For some of you, this doesn't apply, if you
            > aren't a member of Mito LIst!
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