Monthly Momentum January 29, 2021March 15, 2023

Welcome to our newest initiative of 2021! We are gearing up for major success this year that is both mission-focused and community-driven. Our pathway to treatment is the compass leading the way. Join us each month as we spotlight our monthly momentum and impact!

Our monthly highlights include research and community updates as well as goal progress, monthly announcements, and important KIF1A news. Check it out each month!

Research Highlights

Current Studies

Want to comb through the most current literature out there about KIF1A? Check out our updated Current Studies page! Previously published articles are also available here.

Research Roundtable

We kicked off 2021’s first monthly Research Roundtable highlighting KIF1A.ORG’s 2021 Goals and initiatives. January’s Research Roundtable Community Summary is now available!

What Is KAND?

If your family has received a diagnosis of KAND or you just want to learn more in an easy-to-understand format, check out this new, short and simple 4-minute video featured here.

Get to Know Our Researchers!

Each month, one of our invested KIF1A researchers will be in the spotlight! Our very own Dr. Dominque Lessard, Chief Science Officer at KIF1A.ORG, is first in the line up for our Q&A!

Community Highlights

Social Media Posts

While it’s true that our KIF1A superheroes are relentlessness and heroic, many moments are raw, emotional, and challenging. Families don’t often have a platform to highlight daily KAND life. Each Sunday, we will now feature #ThisIsKIF1A for sharing stories of real battles experienced by our friends living with KAND. If you have a story to share, send an email to Charlotte@KIF1A.ORG.

Coping Box Project Update

Living with KAND is HARD, but thanks to a grant-funded opportunity awarded to our friends at Ryan’s Case for Smiles through Phillies Charities, Inc., KIF1A superheroes have extra support and comfort the next time they face a medical procedure, surgery, or an injury. So far, we have been able to supply 10 families with this amazing gift. Read more about this meaningful partnership here.

Family Support Tools

We continue to enhance available resources to newly diagnosed and current KIF1A families. Soon to come:

Frequently Asked Questions: Find out answers to the most common questions asked about KIF1A gene variance, treatment, and more!
Directory of Recommended Providers: A list of specialists hand-picked just for you by the KIF1A community.

Rare Disease Day

Mark your calendars! Rare Disease day is February 28th. Learn more about this worldwide event at rarediseaseday.org. KIF1A.ORG’s awareness effort for Rare Disease Day will be announced soon… stay tuned!

In Loving Memory

Our community has been shattered in grief by the loss of two more young KIF1A warriors. We will honor their memory every single day in our relentless pursuit of finding a cure. We must work faster.

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.

Let’s Do This

Let’s make 2021 the year we bring life-changing and life-saving treatments to our superheroes. It’s a bold and extraordinary goal, but along with your help, we are up for the challenge!

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January 2021 Highlights