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Latest Updates

Retta Beery added a new article Head of FDA, Margaret Hamburg, resigns

1 month ago

Retta Beeryreplied to: RE: Hi from New Zealand

Hello, I don't know Amy Haynes - sorry. I appreciate your posting as you never know if someone else may know her. I didn't find her on our site eit...

1 month ago

kiwigirlreplied to: RE: Hi from New Zealand

Hi Retta, can I ask many years ago I had contact with a lady by the name of Amy Haynes, she lived in Milpitas CA. She also had DRD we lost contact ma...

1 month ago

kiwigirlreplied to: RE: Hi from New Zealand

New Years Greetings to everyone out there. I thought I would post an interesting update this morning. We went to friends for a BBQ the other weekend ...

1 month ago

Retta Beery added a new article Hope for 2015

2 months ago

Retta Beery added a new article Smartphones are the future of medicine

2 months ago

Retta Beeryreplied to: RE: megan soltani colorado update

I am so sorry to hear about the lack of help for your sister. Can you request an earlier appointment for her and attend the appointment with her and ...

2 months ago

Laceyreplied to: RE: megan soltani colorado update

So we have gotten lost in the world of testing... As far as I know next apt will be a year from the last visit that was in Oct 2014. Dr had discussed ...

2 months ago

replied to: RE: Rambut bagai Terlahir Kembali

http://techbloggies.com/story.php?title=rambut-bagai-terlahir-kembali http://www.insideuview.com/ActivityFeed/tabid/60/UserId/107201/Default.aspx

2 months ago

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

5 months ago

Raymond Raffetyuploaded video

5 months ago

    Retta Beeryuploaded video

    9/11/2014

      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 | 6,958 views | 2 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 | 817 views | 6 months ago
      Latest Journal Entry

      Hope for 2015

      As we enter into the new year, my Hope for the future of medicine is strong.  There have been many advances made in the past few years and we have witnessed many lives that have been changed.  Answers.  Treatments.  Miracles.  With the promise of hope so close to home, we have also witnessed many lives that have not had such a positive outcome.  Lives that are hanging...
      Latest Article
      Exome sequencing gives answers to a 23 year old man
      Precision Medicine has given another family answers after 23 years of searching.  Through full exome sequencing, Dustin Bennett finally has an answer to what has ailed him for 23 years.  Dustin's diagnosis, Episodic ataxia type 1, effects fewer than 100 cases.  Perhaps with sequencing we'll discover more.  To read more of Dustin's story, copy and paste the url: http://medicalx...
      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

      8/8/2014

        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