VIDEO: MECP2 Duplication Syndrome is REVERSIBLE!!!

Hello! This is for Levon. Levon and his fraternal twin are 6 years old.

Levon is pure joy, laughter and absolute light - but he struggles to do even the simplest things that his twin brother can do because Levon was diagnosed with a very rare and difficult disorder called MECP2 Duplication Syndrome in February of 2012. Levon is non-verbal and did not start walking until right before their 4th birthday.

With all of the challenges he faces on a daily basis - he still has a smile that can light up a room.  He is our inspiration.

There are many beautiful children affected by this disorder and like Levon, they are all warriors. We as parents do everything we can to give them the best possible life they can have so they can live it to their fullest but it comes with daily hurdles, advocating systems on behalf of our chidlren, insurance battles, extended stays in hospitals, expensive adaptive equipment and a myriad of other difficulties.

However, last November our small community got some very exciting news. It was announced that researchers at the Baylor College of Medicine, led by Dr. Huda Zoghbi, have reversed MECP2 Duplication Syndrome in adult symptomatic mice using antisense oligonucleotide (ASO) gene therapy!!

We are very optimistic that a cure is on the horizon for children!!

.....We still have a ways to go - but this is a monumentally  huge step in the right direction and can mean so much or our MECP2 community as well as other Rett Related disorders!!!

As a result of this amazing news, our MECP2 parent and family led initiative called "The 401 Project" has launched the "2K16" fundraising campaign asking families in the MECP2 Duplication community to accept the challenge of raising $2,000 each to fast track clinical trials that are a result of Dr Zoghbi's research.

Joseph and I - would like to commit to the 401 Project "2K16 Challenge" of raising $2,000. 100% of the money raised will go directly to funding the next phase of research at Baylor and hopefully helping our MECP2 brothers and sisters.

If you feel so inclined, we would love your support. Every $1 counts.

~ FOR LEVON. Let's Do This!! - For Levon, For all of the brave MECP2 children. Please Join the Fight. --- Let's Do This!!!!

With Love and gratitutde,
Dyna, Joseph, Maceo & Levon