We’re glad you’re back for another month of KIF1A.ORG announcements! Please mark your calendars for some very important dates! Read this Monthly Momentum update to learn about the upcoming #GivingTuesday movement, our in-person KAND Conference planned for 2023, and how KIF1A data is being used to advance rare disease treatments in an FDA-funded program.
#GivingTuesday 2022: Save the Date!
Giving Tuesday is around the corner! Are you ready to translate hope into action? Join us on Tuesday, November 29 for our GIVE HUGS, GIVE HOPE campaign! Be sure to mark your calendars and share this movement across social media to help the KIF1A.ORG community reach new heights on #GivingTuesday.
Community Highlights
2023 KAND Family & Scientific Engagement Conference
KIF1A.ORG is thrilled to host the next in-person KAND Family & Scientific Engagement Conference in New York on August 3-6, 2023!
Are you interested in joining us? Send in this short survey to help us prepare!
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.
Research Highlights
KAND Becomes One of the First Disorders Included in a New FDA-Funded Accelerator Program
Thanks to our community of patients, families, and researchers at Chung Lab with Columbia University, KIF1A Associated Neurological Disorder has been included in the U.S. FDA’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®)! Read more about this exciting news below.
“We may be rare, but we have a fleet of scientists in our KIF1A Research Network dedicated to making treatments and cures a reality for this generation of KAND patients. Our participation in RDCA-DAP® will offer KIF1A Research Network members even more tools and recruit new members to join our relentless mission of changing the fate of KAND.”
Kat Atchley, President, KIF1A.ORG
For Families: KIF1A & Ovid Therapeutics Community Call Recording Available
Ovid Therapeutics is collaborating with the Chung Lab to create therapies for KAND. We arranged this call to give families the opportunity to connect directly with a few of the stellar scientists from Ovid and ask any questions about their efforts. Did you miss the call? Check out the recording posted on our Private Family Resource Page! If you are a part of our family community and need the password, email us at impact@kif1a.org.
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!
Parker’s KOALA Study Visit
Want to see a KOALA visit in action? Check out superhero Parker’s highlight video from his October KOALA Study visit!
#ScienceSaturday
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 impact@kif1a.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.