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Latest Updates

Retta Beery added a new article Harold Varmus and exiting the NCI

3 weeks ago

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

2 months 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...

2 months 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...

2 months 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 ...

2 months ago

Retta Beery added a new article Hope for 2015

3 months ago

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

3 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 ...

3 months ago

Featured Video
A Family Changed Forever By Sequencing Technology - Meet The Beerys
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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 | 7,124 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 | 908 views | 7 months ago
Latest Journal Entry

Celebrating 13 years of freedom for Noah and Alexis!

Our family is rejoicing as we celebrated Noah and Alexis’s 13 years of freedom yesterday!!  On April 4th of 2002, God led me, after years of research, to three days of a very specific prayer asking for guidance, then to the article that changed Noah and Alexis’s life forever.  A life of wheelchairs, feeding tubes, and being trapped inside non-functioning bodies to a life of f...
Latest Article
Right to Try law signed by Governor Herbert
Cristina Might and her son, Bertrand, gathered with Governor Herbert as he signed a new Utah law that could extend or save the lives of terminally ill patients.  The new "Right to Try" legislation allows patients to search for treatments that are not completely approved by the federal government.  Bertrand, who is 7 years old, was diagnosed with a rare genetic disease called NGYL1.  ...
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