News

100 Miles for the Bradenmobile

100 Miles for the "Bradenmobile"!

Randy Dietz, a 62 year old friend from Harrisburg, PA is traveling to Alabama on November 3rd and 4th to run 100 miles for Braden.
All proceeds will go to Braden's handicapped accessible van (which we call "Bradenmobile") and also for the Albert family to attend the 2nd MECP2 Duplication Syndrome Family Conference in Houston, Texas.
If you wish to donate towards this cause via PayPal, please use the button below.




If you wish to receive updates regarding Randy's progress, please leave your email below.

 

 

News Updates

September 2012 News

100 Miles for the Bradenmobile

Randy Dietz is running 100 miles for Braden Albert.  If you wish to receive updates regarding Randy's progress, please click on the button below.

 

July 2012 News

Dutch MECP2 Duplication Syndrome Website Information

Op de Nederlandstalige website www.mecp2.nl vindt u informatie zoals symptomen, specialisten en nieuws over het MECP2 Duplicatie Syndroom. Deze relatief zeldzame aandoening komt in tegenstelling tot het Rett Syndroom voornamelijk voor bij jongens en wordt gekenmerkt door een ernstige tot zeer ernstige ontwikkelingsachterstand, hypotonie (lage spierspanning) en frequente (luchtweg-) infecties. Ook voor een complete lijst met relevante wetenschappelijke artikelen bezoekt u www.mecp2.nl.

MECP2 Duplication Syndrome Updates

I often send out MECP2 Duplication Syndrome updates.  Sometimes they are sent weekly and sometimes monthly. If you want to stay updated on the latest news pertaining to this disease, please send your name and email address to Pam at....

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June 2011 News

Thank you to Miss Devon Viola who raised $1,396.00 for Dr. Zoghbi's basic science research pertaining to MECP2 Duplication Syndrome.  For Devon's 13th birthday, she had a dance party and mailed invitations to over 100 friends.  In lieu of gifts, she asked everyone to donated money to MECP2 Duplication Syndrome research instead.

 

 

Thank you to Bryce Killian who raised $931.00 for Dr. Zoghbi's basic science research pertaining to MECP2 Duplication Syndrome.  Bryce, a wrestler for Middletown Area High School, conducted a "pin" fundraiser.

 

Beautiful Poem

                                         

 Heaven’s Very Special Child

  

A meeting was held quite far from earth,

“It’s time again for another birth”

Said the Angels to the Lord above.

“This special Child will need much love.

His progress may be very slow,

Accomplishments he may not show.

And he’ll require extra care

From the folks he meets down there.

He may not run or laugh or play:

His thoughts may seem quite far away.

In many ways he won’t adapt

And he’ll be known as handicapped.

So let’s be careful where he’s sent.

We want his life to be content.

Please Lord find the parents who

Will do a special job for You.

They will not realize right away

The leading role they’re asked to play.

But with this child sent from up above

Comes stronger faith and richer love.

And soon they’ll know the privilege given

In caring for their gift from Heaven.

Their precious charge so meek and mild

Is Heaven’s Very Special Child.”

 

 

 

Order Your MECP2 T-Shirts!

MECP2 T-Shirt

Order yours today by printing and mailing the Order Form.

Update:  July 21, 2011

Another order is being taken for shirts.  Please send Pam Albert your order by August 19.  If you have any questions, email Pam at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

News Alert!

Pennsylvania MECP2 Duplication Syndrome Awareness Month Resolution.

Click here to read this resolution that was recently adopted by the Pennsylvania House of Representatives.

 
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