From KIF1A.ORG May 31, 2021June 1, 2021

What a month! In May we surpassed our $100,000 USD fundraising goal to accelerate KAND therapeutic development, introduced a new partner: Good Dogg Beverage, welcomed Summer Interns, opened the KAND Conference registration, and even more. Learn more about the progress we’ve made in this Monthly Momentum update.

KIF1A.ORG’s 2021 Virtual Conference Registration Open!

Our virtual conference is approaching quickly and registration is officially OPEN! Click the button below to register for the event. Can’t wait to “see” you there!

Treatment Accelerator Program (TAP) Fundraiser Update

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

We did it!! In less than a month, we raised $100,000+ USD to launch the Treatment Accelerator Program (TAP) to expedite our search for treatments for our KIF1A superheroes. Thank you for every donation, every share and every note of encouragement.

We’re reviewing proposals from multiple contract research organizations to perform this work. Stay tuned for updates!

Research Highlights

Research Roundtable

During this month’s Research Roundtable, Dr. Isabelle Thiffault, Director of Translational Genetics Clinical Lab at Children’s Mercy Research Institute Genomic Medicine Center, walked us through some of the programs and high-level genetic analysis at Children’s Mercy Hospital and their research initiative called Genomic Answers for Kids (GA4K). Dr. Thiffault also provided strong support for KIF1A variants being a frequent cause of neurodevelopmental disorders. May’s Research Roundtable Community Summary is now available!

Get to Know Our Research Network!

Each month, one of the invested members of our KIF1A Research Network will be in the spotlight. Dr. Ajay Chitnis, Senior Investigator and Head of Section on Neural Developmental Dynamics at National Institutes of Health, Division of Intramural Research, is next up for our Q&A! Read on to learn about his personal connection to KIF1A.ORG’s mission.

A Warm Welcome To Our 2021 Summer Research Interns

Please help us welcome two interns from the M.A. Program in Biotechnology at Columbia University: Jerry Shen and Michelle Tao! Learn more about Jerry and Michelle and how they will share their skills and experience with KIF1A.ORG this summer to help advance our mission!

Community Highlights

Meet Good Dogg Beverage

We are excited to introduce you to Good Dogg Beverage, a new philanthropic company that makes premium hard seltzer to support causes they care about, like KIF1A.ORG. As a purpose-driven company, Good Dogg Beverage is a rare hard seltzer maker that stands out from the rest. Their goal is to make a positive impact on communities like ours, and make good seltzer along the way!

“We see the relentless nature to which this community moves to find therapies and raise awareness for these superheroes (and their sidekicks). We at Good Dogg Beverage aim to be a philanthropic company from day one, and we consider it an honor to join your community to further the mission of KIF1A.ORG!”
Andrew Parry, Director of Marketing and Communications at Good Dogg Beverage

Good Dogg Beverage Partners with KIF1A.ORG to Support Our Mission

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 in the News

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

Turner’s Story

photo of kif1a superhero smiling in wheelchair — Denver7: ‘You Pray That There’s a Treatment That Can Help’: Inside a Colorado Family’s Experience With Rare Disease

Harlin’s Story

KIF1A superhero laying on back with smile — KFVS12: Hope for Harlin: Cape Girardeau Co. Toddler Battles Rare Condition

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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May 2021 Highlights