The Christmas Gift of Hope

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We are families with children afflicted by a devastating neurological disorder called MECP2 Duplication Syndrome. Research to find a potential cure for this disorder is very promising, but it needs funding. We’re doing this campaign together to send out to all of our networks of family and friends to ask for your support to help us raise funds for this research to change our children’s lives.

This year the 401 Project aimed to raise $1.2 million towards current MECP2 Duplication Syndrome projects, including phase 2 ASO project in the lab of Dr. Huda Zoghbi, phase 2 of a Drug Screen project also in the lab of Dr. Zoghbi, and also to generate funds which would enable us to recruit new labs. So far we have raised $410,000. As we move to the end of the year let’s close the gap on our 2017 target.

Our Christmas campaign aims to raise an additional $50,000 in 6 weeks, to position us to expedite a cure or treatment for MECP2 Duplication Syndrome. With your support, we will create a beautifully decorated Christmas tree to help us achieve our $50,000 Christmas goal. Help decorate our Christmas tree by purchasing one of the decorations. Your decoration will be added to the tree and contain the name of the child whom your donation is in honor of.

To encourage support of this campaign, Van Wright Foundation will match dollar for dollar all donations to a total of $30,000. Donate today to ensure your donation is doubled! Donations over $500 will also receive an exclusive Kachel + Van Wright Foundation silk scarf valued at USD $65.00.



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What is MECP2 Duplication Syndrome?

Unlike Rett Syndrome, which is caused by mutations or deletions in the MECP2 gene, the symptoms that arise from the duplication syndrome are caused, as the name suggests, by having an area of the X chromosome (Xq28), which includes the MECP2 gene, erroneously duplicated. The section duplicated may vary from individual to individual and may also contribute to the severity of the disease.
The syndrome has been diagnosed mostly in boys. The majority inherits the duplication from their mothers who are typically asymptomatic due to favorable X chromosome inactivation (the moms have inactivated the X chromosome that harbors the duplication). Carrier mothers have a 50% chance of passing on the duplication to their children, meaning MECP2 Duplication Syndrome may be quite prevalent.

Learn more about MECP2 Duplication here.

What is the MECP2 Duplication Syndrome Fund at RSRT?

In an effort to immediately leverage RSRT's deep knowledge base and well established global scientific networks the MECP2 Duplication Syndrome Fund at RSRT was created in late 2010. The Fund puts the intellectual and scientific resources of RSRT immediately to work for the MECP2 Duplication/Triplication Syndrome community.
The Fund exclusively supports projects devoted to the study and means of treatment of MECP2 Duplication Syndrome. 100% of every dollar contributed is invested in research - not a single penny goes to overhead.
In 2012, a parent-driven effort was established to raise funds for the initial reversal experiments conducted at the Baylor College of Medicine. Families pledged to raise $401 to cover the cost of the experiments. The initiative was a success, and the 401 Project was born. All funds raised through the 401 Project initiative are directly deposited into the MECP2 Duplication Syndrome Fund at RSRT.

Learn more about RSRT here.

Supporters (13)

  1. Samantha Platz 
    6 days ago
    $200
  2. Samantha Platz 
    6 days ago
    $200
  3. Matthew Lampert 
    1 week ago
    $100
  4. amy spieth 
    1 week ago
    $200
  5. Marcia Anderson 
    1 week ago
    $500
  6. Amanda Hann 
    1 week ago
    $200
  7. Heather Warman 
    1 week ago
    $100
  8. Marcin Renduda 
    1 week ago
    $100
  9. Suzann Huff 
    1 week ago
    $500
  10. Meghan Baker 
    1 week ago
    $200
  11.  
    1 week ago
    $100
  12. Chandler Crawford 
    1 week ago
    $5
  13. Collene Wright 
    2 weeks ago
    $200

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