Lorenzo’s Run for Research

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Lorenzo and his dad, Alessandro, will run the Munich half marathon on October 8, 2017 to raise funding for research for MECP2 Duplication Syndrome. Lorenzo will “coach” his dad while being pushed in his running stroller. The training for this race is well under way and no small feat as our growing boy weighs 24 kg or 53 lbs!

Please help support our father-son running duo by pledging donations. 100% of every donation goes to research. It is a very important time for the MECP2 Duplication families, as Dr. Huda Zoghbi of Baylor University in Houston, Texas has found a cure to reverse the disease and now all that is keeping our boy from a healthier life is funding to support clinical trials which will help children all over the world.

Lorenzo and children like him have a chance at a better life with this research. Imagine for a moment what you would do if you had the opportunity to save your child’s life. We are humbly asking our loved ones for help in attaining this for him. Lorenzo has had challenges and overcome many obstacles in his 8 years, and in January 2017 he was diagnosed with epilepsy, one of many symptoms of MECP2 Duplication. The seizures are not easily controlled with medicine. MECP2 Duplication Syndrome threatens to take away his ability to walk, eat, play and thrive. Please help us help our child. Please read about MECP2 Duplication Syndrome research at www.401project.com.

Lorenzo and his dad are working hard for this race. Please show your support by donating any amount or choosing one of the giving levels to become one of Lorenzo’s Running Team!

Thanks for your support,

Suzi, Alex, Sofia and Lorenzo


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.
The 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.

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