In August 2022, I first interviewed Ryan Sheedy, the Co-Founder of mejo, a company dedicated to creating tools and resources designed to support caregivers and parents. Sheedy discussed how his son’s Costello syndrome diagnosis drove him to create mejo. He felt that caregivers for medically complex children or children with rare diseases lacked the appropriate tools and resources to manage their child’s information. 

mejo has since grown—and, at the beginning of June, announced an exciting update: the company has partnered with the International Rett Syndrome Foundation. Through this partnership, the International Rett Syndrome Foundation hopes to offer My Rett Ally, a mejo-powered web application specifically for families affected by Rett syndrome, to its community. 

This unique digital tool will allow caregivers to track symptoms, patient needs, medical treatments, how someone is developing, personal care and information, test results, and personal information about the person. One of mejo’s goals is to put the “me” back into medicine; including personal information about the person being treated reminds physicians of the humanistic aspect of their job. Information stored on My Rett Ally can be shared with others, making it easier to connect physicians, family members, and others for a more collaborative experience. 

Additionally, My Rett Ally will be free for the Rett syndrome community to use. The app should be launched at some point this summer—so keep watch! 

What is Rett Syndrome?

Rett syndrome is a rare genetic neurological disorder typically caused by MECP2 mutations. There are over 200 different MECP2 mutations associated with this disorder. Rett syndrome affects an estimated 1 in every 10,000 females and is even less common in males. Children with Rett syndrome often develop normally for the first six months of their life. However, they then regress (lose their skills). Over time, children with Rett syndrome also experience more issues with their muscle function. There are no cures for Rett syndrome, but it can be managed. Treatment focuses on reducing or stopping seizures and improving muscle function and communication.

Symptoms of Rett syndrome, which often appear between 12-18 months old, may include:

• Microcephaly (an abnormally small head) due to slowed brain growth
• Reduced hand control
• Uncoordinated breathing
• Loss of communication and language skills
• Scoliosis
• Irregular heartbeat
• Sleep disturbances
• Irritability
• Loss of ability to crawl or walk
• Unusual hand movements such as flapping, wringing, squeezing, or tapping
• Weak or stiff muscles
• Seizures