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Latest Updates

Retta Beery added a new article NIH funding to help with Rare Disease

2 weeks ago

Raymond Raffetyuploaded video

2 weeks ago

    Retta Beeryuploaded video

    1 month ago

      Retta Beery added a new article Make September Dystonia Awareness Month

      1 month ago

      Retta Beeryreplied to: RE: Hi from New Zealand

      It is so good to hear how much you are able to do, especially with your child!! Sleep restores your dopamine levels, so it is imperative that you alw...

      1 month ago

      kiwigirlreplied to: RE: Hi from New Zealand

      Thanks Retta for your reply. I was always told that for my body to do all the things I do was a big push on it. Also getting older you know, I hav...

      2 months ago

      Retta Beeryhttp://www.kusi.com/story/26195662/120m-donated-to-rady-childrens-for-pediatric-genetic-institute?autoStart=true&topVideoCatNo=default&clipId=10438642


      Noah, Alexis, and I were honored to be a part of an announcement on Monday at the Rady's Children

      2 months ago

        Retta Beeryhttp://www.kusi.com/story/26195662/120m-donated-to-rady-childrens-for-pediatric-genetic-institute?autoStart=true&topVideoCatNo=default&clipId=10438642

        2 months ago

          Retta Beeryreplied to: RE: Hi from New Zealand

          Thanks so much for sharing your journey with all of us! It's hard to imagine going through such pain while caring for your little 4 year old! We are...

          2 months ago

          kiwigirlreplied to: RE: Hi from New Zealand

          Hi there everyone Just popping in to say hi, and give a little update. I had a check up with my GP few months back and due to some pain at night a...

          2 months ago

          Retta Beery added a new article New website for Parkinson's patients

          2 months ago

          Retta Beeryreplied to: RE: Sinemate

          There are quite a few labs that are now doing full exome sequencing, if that's what you are thinking of doing. Rare Genomics works with labs around t...

          3 months ago

          replied to: RE: Sinemate

          I have 23 years brother. He was diagonsed with cerebral palsy when he was 2 years old. 3 years ago we took him to new york peresbetarian hospital. The...

          4 months ago

          Retta Beery added a new article DNA test is diagnosing infectious disease

          4 months ago

          Featured Video
          A Family Changed Forever By Sequencing Technology - Meet The Beerys
          starstarstarstarstar
          The Beerys talk about the family's journey of discovering the twins misdiagnosis of Cerebral Palsy and that they actually had Dystonia
          by Retta Beery | 5,138 views | 1 years ago
          Latest Video
          Noah and Alexis's story reach others-the Today Show
          Twins wrongly diagnosed with cerebral palsy After initially being told their children have cerebral palsy, the parents of twins look for other causes...
          by Raymond Raffety | 153 views | 3 weeks ago
          Latest Journal Entry

          Make September Dystonia Awareness Month

          Dystonia continues to effect a huge amount of people in the world and yet so many have never heard of it.  We continue to find so many other patients, just like Noah and Alexis, that are misdiagnosed.  There is a petition to make September the Dystonia Awareness month.  Please consider signing the petition so that more people will understand what Dystonia is and more people will be ...
          Latest Article
          NIH funding to help with Rare Disease
          The NIH has announced their award of $29 million to research for Orphaned Diseases or Rare Diseases.  A disease that affects less than 200,000 Americans is considered rare and there are currently over 30 million people in the US that sufer from a rare disease.  NCATS, National Center for Advancing Translational Science, will lead the effort to tackle these diseases by finding common elem...
          Latest Links

          Retta Beeryhttp://www.kusi.com/story/26195662/120m-donated-to-rady-childrens-for-pediatric-genetic-institute?autoStart=true&topVideoCatNo=default&clipId=10438642


          Noah, Alexis, and I were honored to be a part of an announcement on Monday at the Rady's Children

          2 months ago

            Retta Beeryhttp://pndassoc.org/

            9/11/2013

              Retta BeeryAlex has a mystery diagnosis, while his family is searching for answers....
              http://vimeo.com/51270922

              3/13/2013

                Retta BeeryLink for different forms of Dystonia and individual gene tests noting specific mutations:
                http://omim.org/search?index=entry&start=1&limit=10&search=dystonia&sort=score desc, prefix_sort desc

                3/12/2013

                  Retta BeeryMyclonic Dystonia
                  http://omim.org/entry/159900?search=dystonia&highlight=dystonia

                  3/12/2013