We Have a Cure! Just Need Funding!

  • Description
  • FAQ
  • Comments
  • Supporters

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 
    2 weeks ago
    $100
  2. ULine  
    2 months ago
    $231
  3. Josh Moser 
    8 months ago
    $100
  4. Narinder Tamber 
    9 months ago
    $800
  5. Michelle Spence 
    9 months ago
    $100
  6. Anonymous 
    10 months ago
    $40
  7. Robin& Peter Amaral 
    10 months ago
    $50
  8. Sara Robertson  
    10 months ago
    $50
  9. Jorge & Amanda Guerra and family 
    11 months ago
    $20
  10. Jenny Mcmillan 
    11 months 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 
    1 year ago
    $100
  17. Ginette Chatterton 
    1 year ago
    $275
  18. Emily Cameron 
    1 year ago
    $25
  19. ULine Corporation  
    1 year ago
    $300
  20. Anonymous 
    1 year ago
    $450
  21. Mary Ellroy 
    1 year ago
    $30
  22. Anonymous 
    1 year ago
    $50
  23. Mark Danguecan 
    1 year ago
    $20
  24. John Izard 
    1 year ago
    $25
  25. Mary Ellroy 
    1 year ago
    $20
  26. Shaniza Azeez 
    1 year ago
    $50
  27. Samantha Donoghue-Silva  
    1 year ago
    $10
  28. Eric Horner 
    1 year ago
    $50
  29. Narinder Tamber 
    1 year ago
    $700

This is a unique website which will require a more modern browser to work!

Please upgrade today!