This month we gathered our community at the 2022 KAND Family & Scientific Engagement Conference to share updates, connect, and learn from one another. In August’s Monthly Momentum newsletter, catch up on conference presentations, meet core members of the KIF1A Research Network, and learn about new resources and opportunities with KIF1A.ORG!
KAND Conference Presentations Now Available!
We enjoyed spending time with our community of families, researchers, clinicians, biotech leaders, and supporters at the virtual 2022 KAND Family & Scientific Engagement Conference! At the conference, we discussed the latest in KAND research and therapeutic development, learned about common KAND symptoms and care considerations, and heard from the experts: KAND patients and families. If you missed a session or want to watch the recordings, you’ll find all the presentations on our website and YouTube playlist.
KIF1A.ORG’s Mission: Care Until Cure
New KAND & Spasticity Resource Page Available for Families & Doctors
One challenge in improving quality of life for patients and loved ones affected by KIF1A Associated Neurological Disorder (KAND) is that there are not always clear-cut answers for symptom management. Spasticity is a common KAND symptom, and while multiple treatments are available, the decision of which to use depends on each individual situation. To help inform your decision, we’ve collected some resources on treatments for spasticity that you can discuss with your doctor when making decisions about care.
Meet the Research Network Interviews
Ahead of the 2022 KAND Conference, KIF1A.ORG interviewed core KIF1A Research Network members to discuss their relentless efforts to understand KIF1A and help KAND patients in this special “Meet the Research Network” series on the KIF1A.ORG blog. If you haven’t had a chance to watch the interviews yet, we encourage you to catch up on the KIF1A research going on behind the scenes!
Columbia University Now Enrolling Patients in the KOALA Study
KIF1A.ORG and members of the KIF1A Research Network from around the world are working relentlessly to discover treatments and cures for KIF1A Associated Neurological Disorder. As potential therapeutics are being explored in pre-clinical studies every day, our KAND community must get ready for the world’s first clinical trials for KAND treatments.
The KOALA Study is an opportunity for patients and families to advance KAND research, and get us closer to treatment, by participating in clinical assessments at Columbia University Irving Medical Center in New York City. The KOALA Study (KIF1A Outcome measures, Assessments, Longitudinal And endpoints Study) is led by Principal Investigator Dr. Wendy Chung and a team of specialists who will perform standardized assessments with KAND patients to understand how KAND symptoms develop and change over time.
Visit our KOALA Study page to learn more about the study, how to enroll, and how KIF1A.ORG can support your family’s travel to New York City to take part in KAND research!
Every week, we see advancements in KIF1A research and therapeutic development for rare and neurodegenerative disorders, and we want you to stay informed. If you’ve been behind on our weekly #ScienceSaturday, it’s a good time to catch up. What topics are you interested in learning more about? Sending us an email at firstname.lastname@example.org to suggest articles or content!
Whatever role you play in our community, we need you. Thank you for all that you do to help us realize our mission for KIF1A superheroes everywhere.