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Hello Friends

This Rare Disease Day catch up on exciting announcements from KIF1A.ORG that strengthen our community and accelerate our path to clinical trials, and meet some of the relentless families who are using their voice to drive awareness and empower progress for the KIF1A and rare disease community!

KIF1A.ORG Initiates KOALA Study with the Chung Lab to Accelerate Path to Clinical Trials

If you’ve been following us on social media, we’ve been getting ready to make a major announcement to our KIF1A community. Today, on Rare Disease Day, we introduced our expanded partnership with the Chung Lab to boost clinical trial readiness and create more opportunities for KAND families to play an active role in research to discover treatments. Check out the details and find out the name of our new KOALA friend below!

Community Highlights

How do you say “KIF1A”? If you’re not sure, here’s a fun video made by a few of our talented families!

KIF1A Warrior Charlotte & Mom Dr. Naomi McMackin Speak at Pennsylvania State Capitol for Rare Disease Day

Thank you KIF1A warrior Charlotte and her mom Dr. Naomi McMackin for sharing their KIF1A story and joining the KIF1A.ORG community in our mission to find treatments and cures. Listen to their powerful words here or watch the video below (their speech starts at 16:20). This is what relentless means to the KIF1A community.

“When I fall, I still say ‘I’m okay!’ but sometimes I am not. … But having KAND does not define me. I still have the same rights, thoughts and feelings as everyone else. Having the diagnosis and understanding the cause of my condition gives me hope that someday soon there will be treatment.”

Charlotte, 13 years old

Team Edward in Australia Kicks Off #LightUpForRare for KIF1A

We make it LOUD and BRIGHT around the world for Rare Disease Day! Our KIF1A friends in Australia kicked off #LightUpForRare for the KIF1A community! Join the global rare disease community in solidarity and #LightUpForRare by lighting up your house or lighting a candle in honor of all those affected by rare disease. Include the tag #KIF1A in your social media posts so we can follow along!

News Anchor Shines a Light on KIF1A Warriors Emily & Colbie

Molly Grantham, a news anchor from Charlotte, North Carolina, has been sharing Emily’s KIF1A story every year for Rare Disease Day. This year, she shared this picture of Emily and fellow KIF1A warrior Colbie. Emily and Colbie have been participating in the same intensive therapy program to help the girls battle the degeneration of KAND. Read Molly’s full post on Facebook here.

KIF1A.ORG Partner Good Dogg Supports KIF1A Superheroes & Their Sidekicks!

Our friends at Good Dogg mailed a care package with an adorable sidekick named Teddy to 66 of our KIF1A superheroes from around the world this Rare Disease Day! Stay tuned for a special look at Teddy’s journey to his new best friends.

The Gift of Participation

Luke Rosen, Susannah’s dad and Founder/Board Chair of KIF1A.ORG, was interviewed by the Epilepsy Foundation for their quarterly newsletter. He discusses the harsh reality of living with a neurodegenerative disorder that causes epilepsy and how the KIF1A.ORG community is taking action to discover treatments.

CZI Awards KIF1A.ORG $150,000 and Another Year of Rare As One

In case you missed it, we started Rare Disease Month with fantastic news! The Chan Zuckerberg Initiative (CZI) awarded KIF1A.ORG an additional $150,000 in capacity-building funds and the critical opportunity to engage with the Rare As One Network for one more year! Thank you CZI for partnering with the KIF1A community by including us, investing in us, and empowering us to achieve our mission with complete urgency and collaboration. 

Research Highlights

To keep up with the progress we’re making thanks to your support, sign up for our monthly newsletter and emails!

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.

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