40 and Fundraising! #ReverseRettTogether

  • Description
  • FAQ
  • Comments
  • Supporters

On August 3, Nicole turned 40!

40 years of Smiles, Love, and Laughter! No matter the circumstance of life, we ARE blessed! Nicole has taught SO many about patience, understanding, and unconditional love.  Through her sparkling eyes, her laughs, her up-close encounters gazing into your soul, or frustrated, angry hand-biting, we try to gauge her wants and needs, and find her happy places to help free her silence. She loves music, wheel-of-fortune, eye-to-eye talking, snuggles and most of all, HER Mom.

She has 33 diagnosed years of life with Rett Syndrome, being an observer unable to share her thoughts and feelings. We try to think of what the best material gifts, experiences, and life's options we can give her. This year, we want to give hope! We want to see a cure for Rett Syndrome and for all those effected by the disease. We have come so far from when Nicole was first diagnosed in 1986. The possibility is in our sights and we want to use this time to come together and put and end to this silence effecting so many.

Join us in celebration of Nicole's 40th Birthday by donating to the Rett Syndrome Research Trust!

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive research to a cure for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (8)

  1. Yvonne Rine 
    2 months ago
  2. Carol Toft 
    2 months ago
  3. Sumi Maun 
    2 months ago
  4. Erin Wolf 
    2 months ago
  5. Natalie Michas 
    2 months ago
  6. Kristin Phillips 
    2 months ago
  7. Christine Santori 
    2 months ago
  8. Courtney Pryor 
    2 months ago

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

Please upgrade today!