MECP2 Duplication Syndrome Email Updates:
I email MECP2 Duplication Syndrome updates.....usually once a month. If you want to stay updated on the latest news pertaining to this disease, please send your name and email address to Pam Albert at....
May 2014 News:
Scot and Pam Albert recently had their "5 Annual Taste of Tuscany Dinner Auction." A total of $22,125.00 was raised for MECP2 Duplication Syndrome research.
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!
Update: T-shirts can now be personalized with your child's name.
Pennsylvania MECP2 Duplication Syndrome Awareness Month Resolution.
Click here to read this resolution that was recently adopted by the Pennsylvania House of Representatives.
Hosting an Event?
Are you planning an event to raise awareness or support for MECP2 Duplication or Triplication Syndrome? If so, please Contact Us and let us know so we can post your event details on the website!