Kirt
Kirt has started his junior year of high school. He's been working hard on doing his work and being around his classmates. Please continue the prayers and support. Kirt really enjoys seeing you all and receiving any kinds of mail!
Boston 2025
KOALA Study
In July 2025 we traveled to Boston for the KAND Family & Scientific Engagement Conference and to take part in the KOALA in-person assessments — an incredible few days of testing, meeting with clinicians, and connecting with families and researchers from around the world. As part of the KOALA Study at Boston Children’s Hospital, Kirt completed extensive, standardized testing that gave our care team important updated information about where he is now and will help researchers better understand progression and outcomes over time. It was so encouraging to see other KAND families, share experiences, and witness the real momentum behind research; we left feeling hopeful and energized. We are now working to pursue access for Kirt to a promising new treatment — research into antisense oligonucleotide (ASO) approaches and other targeted strategies is actively moving forward, and programs that accelerate testing of potential therapeutics are helping make clinical options more achievable. Please know that the funds raised at benefits and through donations go directly to make trips like this possible, to cover travel and lodging, to pay for specialized testing and clinic visits, and to support the research projects and translational work KIF1A.ORG funds to move potential treatments closer to patients. Kirt will also be having upcoming appointments at Mayo Clinic as we coordinate next steps — thank you for your continued prayers, encouragement, and support as we keep pushing for treatments and better outcomes for Kirt and other kids with KAND.
Boston Conference 2025
KIF1A Presentations from KAND Conference
KIF1A UpDATES
Mayo Trip #1
Kirt had an appointment at Mayo in Rochester, MN. He saw Dr. Coffman and he ran him through some tests. He diagnosed Kirt with mild dystonia and prescribed Baclofen. "Dystonia is a movement disorder that causes the muscles to contract. This can cause twisting motions or other movements that happen repeatedly and that aren't under the person's control." (Mayo Clinic website) He also thought a neoprene postural support garment would help support his trunk movement. Kirt has an appointment in Topeka to get fitted for the garment.
In the afternoon, he met with the Pediatric Rehabilitation Medicine Consultation and she reported hip abduction was weak and monitoring his skin very important as she suspects poor distal sensation which predisposes him to skin injury.
The last appointment was with a physical therapist. She ran him through some more stretches and strength exercises.
Kirt kept his joyful spirit alive during all the appointments we had and did a great job listening to all the Dr.'s cues.
Mayo Trip #2
Our second trip to Mayo, Kirt met with Sarah and Andrea for his gait analysis test. Thei require him to do different movements to calculate his strengths and weaknesses. Also to assess his walking and balance. Sarah then stuck wireless sensors all over his body in order to get a electromyography signature of his different movements. This gives us a baseline on how Kirt moves.
The second test was a swallow test in which Kirt swallowed a barium mixture in a cup and in between 2 oreo cookies. We could see how the liquid passed through his mouth, throat, and esophagus. He did great and everything was working just like it was supposed to. We will take some good news!
nEW yORK
KOALA Study
Our 1st KAND Conference was August 2023 in New York. Kirt participated in the KOALA Study which included an EEG, physical therapy testing, Occupational therapy, behavioral analysis, bloodwork, and a walk test. We met Dr. Wendy Chung, who is spearheading the fight forl all the KIF1A warriors. We were able to meet a lot of the families in attendance. The KIF1A Associated Neurological Disorder (KAND) conference followed the next two days with different experts, researchers and doctors.
We were fortunate to visit an authentic NYC Fire Dept., toured the 911 museum, took Ferry to see the Statue of Liberty. We also stopped by to shop at the Lego Store. It was huge!