More prayers are appreciated, and, if interested, you can donate here: www.hopeforuld.org/donate #raredisease #rareepilepsy #unverrichtlundborgdisease #genetherapy #givingtuesday

overwhelming, but the suffering of our son and other ULD patients, each with a heartbreaking story, keeps me in the fight. Please know that we are unbelievably grateful for the countless prayers and donations that we have received throughout the years...

like a concussion that will not heal. He is fighting to regain a clear perception of reality, instead of feeling like he is in a confusing nightmare. This is progressive, so things are getting worse. Medications constantly need to be adjusted. The financial goals for clinical trials seem...

for very costly human clinical trials. After 3 months in the hospital, including time on a ventilator, our son is fighting, too, to regain his abilities to talk clearly, sit up in bed, and move around in his wheelchair. He is fighting to stop the seizures and the confusion that feels like...

The loss of dreams. The loss of abilities. The loss of freedom. The loss of a pain-free life. And because the disease is progressive, things get worse. This is why Hope for ULD exists.

Usually patients eventually have trouble speaking. Their brains are not evenly affected by the disease. Bright and articulate thinkers suddenly have trouble verbalizing and can become confused. ULD affects people differently, but most patients and their families suffer trauma, grief, and loss.

They are hard to control. They can be relentless. They slowly change life. Eventually, they often take away the ability for patients to walk safely, causing MANY falls and injuries. Many patients end up needing to use wheelchairs. Once easy daily personal care tasks can become impossible...