Background Color:
 
Boxed
Stretched
Background Pattern:
Reset
Register
img1
img1
img1
img1
img1
img1
img1
img1
img1
Latest Updates

Retta Beeryreplied to: RE: megan soltani colorado update

That sounds great! I'll be praying for wisdom and discernment for your family and the doctors for dosing. I'm praying for continued response and loo...

5 days ago

Laceyreplied to: RE: megan soltani colorado update

we have not seen any extra movements but the changes so far is she is sleeping through the night for first time ever in her 14 years. also is able to ...

6 days ago

Retta Beeryreplied to: RE: megan soltani colorado update

A half of a pill three times a day is a pretty high dose to start on. Our neurologist in Michigan started Alexis on a quarter of a pill three times a...

1 week ago

Laceyreplied to: RE: megan soltani colorado update

so far she is taking half a pill three times a day. today is her second day and i just havent gotton ahold of my mom and sister on the phone to see ho...

1 week ago

Retta Beeryreplied to: RE: Thanksgiving

It was great to meet you! We are so grateful for God's continued leading in our lives and, we completely agree with you, His timing is always perfect...

1 week ago

Laceycreated the topic: megan soltani colorado update

we start meds today

1 week ago

Ben Gastoncreated the topic: Thanksgiving

Thank you, Beery's for sharing your story. It was a great blessing to me. We regularly follow children whose respiratory diagnosis is obscure. ...

1 week ago

Retta Beery added a new article Patient Advocacy - Fight or Flight

1 month ago

Retta Beery added a new article Rare Disease Battle continues

1 month ago

Retta Beeryreplied to: RE: Thank You!

Hi Alma, I'm so happy to get your posting! Please tell me all about your daughter and your journey. Retta

1 month ago

Almacreated the topic: Thank You!

Mrs. Beery- Thank you for your work on this site! I want to let you know that you have been the answer to my prayers. After 7 years of tears, question...

2 months ago

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

Mystery Illness - Relentless Search
This is Alex's story. An otherwise happy kid who has an unknown mystery illness. This invisible disease has slowly over the course of a year taken away Alex's abilities…

2 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 | 524 views | 2 months ago
    Latest Video
    GENOME: The Future Is Now WEBISODE 1
    Meet George Church, founder of the Personal Genome Project. GENOME: THE FUTURE IS NOW, a multi-media documentary project with a film and interactive w...
    by Retta Beery | 136 views | 2 months ago
    Latest Journal Entry

    Cleveland Clinic personalized medicine health summit

    Joe and I had the honor to be the keynote speakers at the Cleveland Clinic Personalized Medicine Health Summit last Monday, May 6th.  We shared Noah and Alexis's story, Joe sharing about his career path while I shared, on the same timeline, Noah and Alexis's medical journey.  It continues to amaze me how God started Joe in the semi-conducter industry, making semi-conductor chips (circuit...
    Latest Article
    Sequestration suspends important research on cancer
    The NIH's 2013 budget was cut by 5.1% or about $1.6 billion.  Medical research is being halted, midstream, as the cuts continue to take away jobs, innovative, transformative, medical advances, and future insight into understanding and treating disease.   Read more, bloomberg article link: http://www.bloomberg.com/news/2013-04-04/tumors-on-ice-as-budget-impasse-freezes-medical-research....
    Latest Links

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

    Mystery Illness - Relentless Search
    This is Alex's story. An otherwise happy kid who has an unknown mystery illness. This invisible disease has slowly over the course of a year taken away Alex's abilities…

    2 months ago

      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

      Different forms of Dystonia and individual gene tests
      Link for different forms of Dystonia and individual gene tests noting specific mutations:

      2 months ago

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

        Myclonic Dystonia
        Myclonic Dystonia

        2 months ago

          Retta BeeryDystonia Medical Research Foundation
          http://www.dystonia-foundation.org/

          Dystonia Medical Research Foundation
          Foundation supporting research, awareness and support related to dystonia.

          2 months ago