I have lived with Lambert Eaton Myasthenic Syndrome (LEMS) for 15 years, being diagnosed at 5 years old in 2011. For those not familiar, LEMS is a rare autoimmune disorder that affects the connection between the nerves and muscles at the neuromuscular junction. This condition causes muscle weakness and limits daily activities. 

However, 3,4-diaminopyridine (3,4-DAP) provided a sense of normal for patients like me. This medication improved my life tremendously, allowing me to engage in daily tasks with strength and energy that LEMS had otherwise stripped away. I was able to for the first time in my life run around, jump, and keep up with others.

Unfortunately, 3,4-DAP was pulled off the market in 2022, forcing those of us whose lives improved to plummet. The intellectual property rights now sit with Cataylst Pharmaceuticals but the medication is not being made. The removal of this essential medication is not just a personal loss, but a collective setback for all patients living with LEMS.

Catalyst Pharmaceuticals is committed to “doing everything humanly possible to improve the lives of people living with rare and difficult to treat conditions.” The impact on patient lives should always be at the forefront of these decisions on wheather to make a medication or not.

3,4-DAP has significantly enhanced the quality of life for LEMS patients. It allows us to partake in everyday activities that many others take for granted, such as walking, writing, jumping, lifting, or simply enjoying time with loved ones. Furthermore, this medication gives patients independence and dignity.

Our goal is to urge Catalyst Pharmaceuticals to use their patent and reintroduce 3,4-DAP into the market here in the United States. Catalyst has been able to delay generic production of this drug until 2035 by settling with other manufacturers in 2025. For LEMS patients, this is a life-changing medication and we want it to be accessible and be able to live better lives.

We call upon everyone who wants to make a change to support our cause by signing this petition. Together, we can make a compelling case to bring 3,4-DAP back to those who need it, restoring hope and improving the quality of life for countless individuals living with LEMS. Please sign and share this petition to amplify our voices and drive a change.