Jessica’s Walk for a Cure

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We are celebrating Jessica's 40th birthday with a walk on June 22 at Camp Cedar Hill in Waltham to raise funds for Rett Syndrome research. Please join us in support of this important cause.

In 1979, when our beautiful daughter was born, Rett Syndrome was unheard of in this country. What a long way we have come in 40 years. Rett Syndrome is now more widely known, and the research has made remarkable progress. A major breakthrough occurred in 1999 when it was found that when the MECP2 gene is mutated it causes Rett Syndrome. Because of this discovery there is now a simple blood test to determine the existence of Rett. This discovery also led to a dramatic increase in research that has progressed at an amazing pace with clinical trials and research in animal models being conducted throughout the world.

The Rett Syndrome Research Trust (RSRT) was launched in 2008 to drive research to find a cure for the 350,000 girls and women around the world, including 15,000 in the U.S., with Rett. (A very small number of boys are also affected.) Since that time RSRT has awarded $58 million to research. Current projects are extensive and exciting. Some projects, such as gene therapy seek a cure for Rett Syndrome. Gene therapy would deliver healthy copies of the MECP2 gene to compensate for the mutated ones. Other projects focus on treatment with the goal to improve the quality of life for those with Rett Syndrome. The list of research projects is impressive.

We are thrilled to be able to celebrate Jessica’s 40th birthday. Jess continues to be able to ambulate with assistance, she is able to feed herself using an adaptive splint. She has thrived living in her group home in Foxboro these past four years where she enjoys the company of her roommates and the wonderful staff that care for her. She has continued to attend her day program at the Charles River Center where she has another community of friends and devoted caretakers. Jess spends many weekends at home. She loves long walks, snuggling on the couch with mom or dad to watch tv, and having face time with her niece and nephew. She has maintained skills that she has worked hard to achieve and has been quite healthy. Our extended families and our circle of friends have always loved and embraced Jessica and have included her in all activities and events. Jessica has enriched our lives in many ways and we treasure the years we have had with her.

You can honor Jessica on her milestone birthday by making a donation to the RSRT to help fund further research. Your donation is Jessica’s gift to the children of the future born with Rett Syndrome who will benefit from your generosity.


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.

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