top of page
Writer's pictureInternational Rett Syndrome Foundation

International Rett Syndrome Foundation Unveils My Rett Ally to Support Caregivers of Individuals with Rett Syndrome

NEWS PROVIDED BY

International Rett Syndrome Foundation


My Rett Ally, a web application powered by mejo, is specifically designed for Rett syndrome patients and families to simplify and enhance care coordination.

We recognize the importance of providing support to caregivers and believe [My Rett Ally] will offer practical assistance by simplifying administrative tasks and improving care coordination.”

— Melissa Kennedy, IRSF CEO


CINCINNATI, OHIO, UNITED STATES, July 18, 2023/EINPresswire.com/ -- The International Rett Syndrome Foundation (IRSF) is pleased to announce the launch of the My Rett Ally web app, a valuable addition to the resource toolkit for parents and caregivers of individuals with Rett syndrome. Developed in partnership with mejo, a leading technology company specializing in rare disease solutions, this digital caregiver tool will simplify and streamline caregiving tasks and enhance coordination, offering caregivers peace of mind.


“We are pleased to offer the My Rett Ally web app as another valuable tool for parents in their caregiving journey for loved ones with Rett syndrome,” said Melissa Kennedy, Chief Executive Officer of IRSF. “We recognize the importance of providing support to caregivers and believe this resource will offer practical assistance by simplifying administrative tasks and improving care coordination.”


The My Rett Ally web app provides a user-friendly platform that consolidates crucial information and promotes collaboration with medical professionals. Caregivers can store and share important information about their child easily by utilizing features such as the medical journal, daily tracker, and document library.


Bret Koncak and Ryan Sheedy, Co-Founders of mejo and themselves parents of children with rare diseases, expressed their appreciation for the partnership and the potential impact of the My Rett Ally web app. "We are pleased to collaborate with IRSF to deliver the My Rett Ally web app tailored specifically to the Rett syndrome community. My Rett Ally simplifies the day-to-day elements of caregiving allowing caregivers to focus more on quality time with their loved ones. We commend IRSF for recognizing the importance of supporting caregivers and the positive impact it has on individuals with Rett syndrome."


The My Rett Ally web app is free to all families and caregivers of individuals with Rett syndrome in the United States and represents IRSF's ongoing commitment to empowering families with the tools and resources they need to thrive.


For more information about the My Rett Ally web app and the International Rett Syndrome Foundation, please visitrettsyndrome.org/myrettally.


About Rett Syndrome


Rett syndrome is a rare genetic neurological disorder that occurs mostly in females (1 in 10,000 births), with a growing number of males being identified, and leads to severe impairments, affecting nearly every aspect of life. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained, including their ability to speak, walk, eat, and even breathe. The hallmark of Rett syndrome is near constant repetitive hand movements while awake, and individuals with Rett may experience seizures, scoliosis, breathing issues, GI issues, and more. Rett syndrome is not a degenerative disorder; individuals can live to middle age or beyond.


About International Rett Syndrome Foundation (IRSF)


As the leading Rett syndrome research and advocacy organization, the International Rett Syndrome Foundation (IRSF) builds upon its nearly 40-year commitment to breakthrough discoveries and life-changing advancements in research toward treatments and a cure while supporting families affected by Rett syndrome. Through its legacy foundation pioneers, IRSF has invested over $58M in research leading to identifying Rett syndrome’s cause, demonstrating Rett syndrome is reversible in mice, and supporting the clinical trials that led to the first FDA-approved treatment. IRSF fights for families living with Rett syndrome and a world without it. Learn more atrettsyndrome.org.


About mejo


mejo®is a company focused on creating tools and resources to support caregivers and parents daily. Built with the ability to incorporate custom branding, the organization’s most recent launch was a web application that offers a streamlined way for parents to organize and share important medical and care information about their children.


To learn more visitwww.mymejo.comand @my_mejo on Instagram and Facebook.


Meghan CordeiroInternational Rett Syndrome Foundationmcordeiro@rettsyndrome.org






   

Comments


bottom of page