We Have a Cure! Just Need Funding!

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Worst day of our lives:  March 28, 2017, our 16-month-old son Octavius gets diagnosed with a rare genetic condition called MECP2 Duplication Syndrome. Most children will not live past the age of 25.

The thought of our son not being able to live a full prosperous life breaks our hearts. However, there is hope. Unlike most conditions, this condition has a cure and the only thing preventing us from the cure is raising the required funds.

In 2015, Dr. Huda Zoghbi of Baylor College of Medicine demonstrated that a dramatic reversal of Duplication Syndrome is possible. Her lab is now working on several key experiments that are critical next steps before a clinical trial can be initiated. This research has costs of $300,000 and we hope to raise $50,000 as a major step in making these experiments possible. With your donation, you will help bring the cure to life.

This is the time that we need all our family, friends and support network to be the voice for Octavius.


What is MECP2 Duplication Syndrome?

MECP2 is rare genetic neurodevelopmental disorder characterized by a wide variety of symptoms including low muscle tone (hypotonia), potentially severe intellectual disability, developmental delays, recurrent respiratory infections, speech abnormalities, seizures, and progressive spasticity, a condition characterized by muscle stiffness that is worsened with movement and can be associated with involuntary muscle spasms.

Learn more about MECP2 Duplication Syndrome here.

Who is 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. To date, the MECP2 Duplication Syndrome Fund has raised over $2 Million

Learn more about RSRT here.

Supporters (29)

  1. Chester Sisouw 
    3 months ago
    $100
  2. ULine  
    4 months ago
    $231
  3. Josh Moser 
    10 months ago
    $100
  4. Narinder Tamber 
    11 months ago
    $800
  5. Michelle Spence 
    11 months ago
    $100
  6. Anonymous 
    12 months ago
    $40
  7. Robin& Peter Amaral 
    12 months ago
    $50
  8. Sara Robertson  
    1 year ago
    $50
  9. Jorge & Amanda Guerra and family 
    1 year ago
    $20
  10. Jenny Mcmillan 
    1 year ago
    $250
  11. Cedric Rateau 
    1 year ago
    $10
  12. Peter Anderson 
    1 year ago
    $50
  13. Al & Rhonda James 
    1 year ago
    $500
  14. Gaby Mutchmore  
    1 year ago
    $15
  15. Yuriy Pukhkalo 
    1 year ago
    $200
  16. Heather Britton 
    2 years ago
    $100
  17. Ginette Chatterton 
    2 years ago
    $275
  18. Emily Cameron 
    2 years ago
    $25
  19. ULine Corporation  
    1 year ago
    $300
  20. Anonymous 
    2 years ago
    $450
  21. Mary Ellroy 
    2 years ago
    $30
  22. Anonymous 
    2 years ago
    $50
  23. Mark Danguecan 
    2 years ago
    $20
  24. John Izard 
    2 years ago
    $25
  25. Mary Ellroy 
    2 years ago
    $20
  26. Shaniza Azeez 
    2 years ago
    $50
  27. Samantha Donoghue-Silva  
    2 years ago
    $10
  28. Eric Horner 
    2 years ago
    $50
  29. Narinder Tamber 
    2 years ago
    $700

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