A Family’s Journey with Coats’ Disease: Finding Support and Making a Difference

When a family receives a medical diagnosis that changes their lives forever, their journey becomes one of resilience, determination, and hope. The Richardson family, residing in Nashville, Tennessee, found themselves facing such a situation when their youngest child, Kip, was diagnosed with Coats’ Disease at the tender age of 5. In the face of adversity, the Richardson family embarked on a path of seeking medical treatment, finding support, and making a difference through their involvement with the Jack McGovern Coats’ Disease Foundation (JMCDF). Their journey also led them to create an inspiring initiative known as Notes for Coats’, where music and awareness intertwine to raise funds and foster hope for a cure.

Lisa and Keith Richardson, along with their son, Kip, were residing in Nashville, Tennessee when they received the diagnosis of Coats’ Disease for their son. Lisa explained that they did not have any early indicators that Kip had a problem. Lisa never saw “the glow” that is often associated with Coats’ Disease. It was during a routine eye exam that Kip’s optometrist, Dr. Melissa Dow, noticed anomalies in his retinal scan. Dr. Dow referred them to Dr. Franco Recchia for further evaluation, which led to Kip’s diagnosis of Coats’ Disease. The family learned that Coats’ Disease is a rare eye disorder that primarily affects young boys and can lead to vision loss or even blindness if left untreated. This highlights the importance of early eye exams in detecting and managing eye conditions.

Despite the challenges ahead, the family united to confront the diagnosis head-on. Seeking the best possible care for Kip, the Richardson family turned to Dr. Franco Recchia at Tennessee Retina. Kip’s Coats’ Disease was caught at stage 2 when he was diagnosed. Since then, he has undergone two laser surgeries and has routine monitoring and treatments provided by Dr. Recchia. Lisa emphasized the importance of routine checks and expert treatments in maintaining Kip’s stability. Through medical intervention and diligent care, Kip’s status has remained stable, offering a glimmer of hope and progress.

Amid the uncertainty and emotional turmoil, Lisa Richardson discovered the Jack McGovern Coats’ Disease Foundation and found it to be a beacon of guidance, support for families facing similar challenges. Drawn by the foundation’s resources and camaraderie, Lisa became involved with the Coats’ Ambassador Network (CAN) shortly after Kip’s diagnosis in 2017. As time passed, her dedication and commitment grew, eventually leading her to become a valued member of the JMCDF’s board of directors in 2021. For the Richardson family, JMCDF wasn’t just an organization – it was a lifeline of hope and understanding.

In their pursuit of making a difference, the Richardson family harnessed their love for music and their connection with the JMCDF to create an extraordinary initiative called Notes for Coats’. This event brings together songwriters and artists from Nashville’s vibrant music scene to share their music, stories, and inspirations. It’s a unique opportunity for music enthusiasts to delve into the intimate narratives behind their favorite songs while contributing to a noble cause.  Thanks to the incredible support from Keithan Melton, GM at Combustion Music, each ‘Notes for Coats’ showcases some of the top songwriters in today’s music. 

The inspiration for Notes for Coats was rooted in Nashville’s rich musical landscape and the family’s deep affection for music. Living in the heart of Music City, they recognized the potential to leverage the city’s artistic community to raise awareness and funds for Coats’ Disease. This also aligned perfectly with their desire to spread awareness about Coats’ Disease. 

Notes for Coats’ has already achieved remarkable milestones. The initiative has raised over $25,000 for the JMCDF, providing vital funds to support research on treatments for Coats’ Disease. Beyond financial contributions, Notes for Coats has played a pivotal role in raising awareness about this rare condition, fostering empathy and understanding within the community. With hosts Wayne D & Tay from Nashville iHeart Country radio station The Big 98 Notes for Coats’ has been able to spread the word far and wide! 

Looking ahead, Lisa Richardson’s aspirations for Notes for Coats’ are resolute. Her goal is to continue raising awareness and funds that will eventually lead to improved treatments and, ultimately, a cure for Coats’ Disease. Lisa envisions a future where Notes for Coats’ events are not just opportunities to raise funds, but also joyous celebrations of a cured Coats’ Disease, a day where music and hope blend harmoniously to mark a significant medical triumph.

The Richardson family’s journey from diagnosis to hope is a testament to the power of resilience and the impact of community support. Through music, awareness, and determination, the Richardson family is not only navigating their own path but also lighting the way for others affected by this rare condition. Their story is a reminder that even in the face of adversity, love, unity, and the pursuit of a cure can create remarkable notes of change.

At KnowTheGlow, we look forward to sharing more about the outreach and growth of the Notes for Coats’ program and about the bright future ahead for Kip and his amazing family!