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Linda Taylor's Fundraiser:

REVERSE Rett Syndrome

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Linda Taylor via Crowdrise
May 04, 2011

''A ten-year-old with a body that has regressed to the motor skill levels of a tiny infant..'' http://bit.ly/jYs3Pz  See more

BENEFITING: Rett Syndrome Research Trust

EVENT DATE: May 03, 2011

HOURS PLEDGED: 1,000

Linda Taylor

THE STORY:

Imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy, and anxiety disorders…all in one little girl.

Now imagine these symptoms vanishing ... one by one.

This is the work of the Rett Syndrome Research Trust

Rett Syndrome is the most physically disabling of the autism spectrum disorders. It strikes at random in early childhood, affecting little girls almost exclusively. Many girls live into adulthood, requiring total, 24-hour-a-day care. There is no treatment beyond supportive, and often ineffective, measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures.

Symptoms include:
Loss of speech and motor control
Functional hand use replaced by compulsive hand movements
Disordered breathing
Severe digestive problems
Orthopedic abnormalities including scoliosis and fragile bones
Disrupted sleep patterns
Extreme anxiety
Seizures
Impaired cardiac and circulatory function
Parkinsonian tremor

The Rett Syndrome Research Trust is a 501(c)(3) organization (tax ID: 26-0687439).

Our numbers reflect RSRT’s commitment to our current and future supporters: In 2010 96% of every dollar donated was channeled directly to our program services - and RSRT has only one program service: research.

We believe passionately that Rett Syndrome is reversible. Everything we do, every day, stems from this belief. The scientists, technologies and ideas are in place. Our next steps are clearly defined. We need your support to continue our work.

If healing your child would heal your heart,  we invite you to join our effort.

Whether you are the stunned and grieving mother and father of a newly diagnosed baby, or the seasoned parents of a thirty-year-old whose potential has been locked in by Rett Syndrome since she was a small child, our message to you is that this fate is unacceptable.

Taking this stand is not a simple task for a parent while doing all that daily nurturing requires, rejoicing in each small step our child can accomplish and grateful for any amelioration of pain and stress. But visionary leaps are not achieved through acquiescence or passive hope.

The Rett Syndrome Research Trust is a determined and highly focused research organization engaging the most brilliant scientific minds. The task of unlocking the mechanisms of Rett Syndrome and related MECP2 disorders is difficult and important. The restoration of normal human function in such a complex syndrome has enormous implications for a much greater population. Twenty-first century science is moving very rapidly; a new paradigm of what is possible has already been established for Rett Syndrome, and that is the starting point of the Rett Syndrome Research Trust.

If healing your child would heal your heart, we invite you to join our effort.  For information on how you can make a meaningful contribution to this work, please contact us.  

 

Monica Coenraads
Executive Director, RSRT
monica@rsrt.org
203.445.0041

The Rett Syndrome Research Trust is pleased to announce a campaign to boost awareness of Rett Syndrome in the most iconic of all advertising venues – Times Square in New York City. A newly created public service announcement will run an average of nine times an hour for three months starting November 1st on the colossal 6000 square foot Mediamesh display at the corner of 42nd Street and 8th Avenue.  An estimated 1.5 million people are expected to view the PSA daily.   Click here to watch the video.

Help us REVERSE Rett Syndrome.

www.rsrt.org

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Anonymous

DONATION: $15,000

6 years ago