Monthly Momentum- April 2021
Hello Friends

Special Edition! TODAY is KIF1A Day! Check out this Monthly Momentum update from KIF1A.ORG to see how our community is driving progress and how YOU can be the hero that our superheroes need.

Support Our Superheroes on KIF1A Day

You Can Make an Impact

KIF1A.ORG is a community of families, scientists and supporters like you who are funding projects to find treatment for our superheroes battling KIF1A-Associated Neurological Disorder. From small molecule drug discovery to antisense oligonucleotide therapy, we’re working rapidly to outpace the ticking KIF1A clock. Our superheroes have no time to wait. Every time a child has a debilitating seizure, requires invasive surgery, or loses their life, we are reminded that we MUST move faster.

The good news is that KIF1A.ORG and the KIF1A Research Network have already identified therapeutic candidates that show promise to treat KAND. The problem is we won’t know whether these candidates can treat KAND until we do the pre-clinical work to prove their effectiveness. That’s why we’re launching the Treatment Accelerator Program (TAP) to expedite the search for treatments for our superheroes. TAP will enable KIF1A.ORG to hire a Contract Research Organization (CRO) to design and manage a system to model KAND in cell lines and test potential therapeutics for KAND. By leveraging these services, KIF1A.ORG can move at scale and speed to expedite our path to the world’s first clinical trials for KAND. Every donation goes directly to research and therapeutic development.

Will you help pave the road to our first clinical trial?

Imagine if we could change the fate of KAND. Instead of a doctor telling parents there’s nothing they can do to help or save their child from the devastation of KAND, we envision a future where doctors can say “It’s going to be okay. There is treatment.”

$96,800+ of $100,000 USD Goal Raised to Launch Treatment Accelerator Program


Research Highlights


Community Highlights

We Remember

Our KIF1A community is shattered by the loss of sweet Giulia, another precious warrior gone too soon. Every day we go without treatment, our warriors—young and old—risk losing the skills and abilities they fight so hard to gain, or even their life. We must work faster to bring treatment to KIF1A families. Whatever role you play in our community, whether you are a person living with KIF1A, family member, scientist, clinician or supporter, thank you for joining together to put an end to this devastating disease.


KAND Clinician Directory

With the information provided to us by our caregiver and patient community, a global directory of clinicians who are highly regarded in our community has been established as an available resource when new families join our community or for those in need of recommended options within their geographical location. Check it out here!

Employer Giving Programs

Did you know that many employers have giving programs available that will enhance your fundraising efforts for KIF1A.ORG? Take a look at some different programs your employer may offer and how to find out what’s available. Share with your friends, family and other invested donors so they can also make a larger impact with their donations to KIF1A.ORG!

KIF1A.ORG’s 2021 Virtual Conference

Mark your calendars for July 9th and 10th! Our 2021 virtual conference is possible thanks to the CZI Rare as One grant awarded to KIF1A.ORG. It will be a great opportunity to connect with our family and scientific community, hear about funded project updates and clinical trial readiness, and even enjoy some social time.

Improve Your Experiences with Physicians

KIF1A families know a single physician can make all the difference in their rare disease journey. “Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses” is now available for preorder. You’ll see a story from KIF1A parents Angela and Jeremy who lost their daughter Gia last Christmas. The book promotes empathy and understanding to improve the experience between physicians and families.

KIF1A in the News

Thank you to these relentless KIF1A families for sharing your stories to advocate on behalf of the entire KIF1A community!

Bryce’s Story

Hoyt’s Story

Special Tribute To Dads

Submitted by KIF1A Superhero Emma’s mom

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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