Support Jonathan Dioli's Fight Against Kelch11

Dear Friends & Family-

As many of you know, our dear friends Jonathan & Katie Dioli (and their incredible kids, Desmond & Eliza) have been dealing with some significant medical challenges over the course of the last year & a half.

In October 2023, Jonathan woke up with double vision and balance issues. An MRI showed brain lesions and inflammation, but the cause was unclear. Over the next few months, he received dozens of rounds of IV steroids and almost weekly MRIs, CAT scans, spinal taps, and blood work, but still no answers. An MGH neurologist decided to treat it as a “cousin” condition to MS, but after 2 courses of an MS drug called Rituximab, the condition continued to progress. At the end of August, Jonathan experienced a grand mal seizure, which Dez and Eliza witnessed as they walked into the house from their first day of school.

At that point, a full year from the onset of symptoms, it was clear the diagnosis was not right. MGH decided to send spinal fluid to the Mayo Clinic, where they identified a rare antibody called Kelch 11. This finding is diagnostic of Autoimmune Encephalitis, a rare condition, with the Kelch 11 antibody representing an even rarer form of the disease.

Jonathan's treatment then changed to IV and oral chemo and an IVIG treatment, but so far they have been ineffective. Jonathan’s symptoms have continued to steadily decline throughout December, with blurry vision and mobility continuing to worsen. Recently, plasma exchange therapy was discussed among his clinical team, but then dismissed because “he was too far along.” It was devastating for the family.

Then, a few days ago, a mom and pediatric neurology nurse in their community passed them this video about the team that discovered Kelch 11. Jonathan directly reached out to every expert interviewed in the video and within hours, on a weekend, they heard back from everyone! The clinicians at Johns Hopkins and Mayo Clinic extended invitations for Jonathan to visit their offices in person, and the researchers at UCSF and Yale offered to include him in ongoing studies aimed at finding a cure. These visits and travel costs will be significant, on top of the medical expenses they have already incurred, but they are committed to supporting this important research and doing whatever they can to stop the progression of this disease.

This has been a very challenging journey for the whole family. Jonathan, a father of 2 small kids and once an active dad, house handyman, and amateur woodworker, now struggles to walk. Jonathan is not one to ask for help, but he and his family need it now and are grateful for any support - in any form - from family and friends.

Together, we can support the Dioli Family through this incredibly difficult chapter.

With Love & Gratitude,

Emily Hornsby & Ryan Gleysteen