Monthly Momentum February 2021 featured image
Hello Friends

Special Edition! February 28th is Rare Disease Day! Check out this Monthly Momentum update from KIF1A.ORG to see what is happening around the world to spread awareness and recognize those living with a rare disease.

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!

Rare Disease Day Highlights

The Official Rare Disease Day 2021 video shares the main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Many advocacy groups, families, and those living with rare diseases come together, on this day, to fight for priority in the therapeutic world.

The KIF1A.ORG community joins our rare disease peers on this day to advocate for our KIF1A superheroes and other individuals affected by rare diseases all over the globe. Here are some highlights from KIF1A.ORG:

24 Hours of Rare Panel – Teaming up on a Single- Gene Diseases: A Collaborative Approach to Treatment

Join My City Med as we celebrate the global rare community in a 24-hour marathon event you won’t want to miss in celebration of Rare Disease Day!
On February 28 at 1:00 p.m. Eastern Time, catch a panel discussion featuring members of the KIF1A.ORG community:

  • Luke Rosen, co-founder of KIF1A.ORG
  • Wendy Chung, MD, PhD, Kennedy Family Professor of Pediatrics in Medicine & Chief, Clinical Genetics, Columbia University
  • Stephanie Fischer, Rare Disease Patient Advocate & KIF1A.ORG Champion

Visit to register for this and other events hosted by My City Med.

KIF1A Rare Disease Day Facebook Fundraiser

Help families cure KIF1A today by supporting KIF1A.ORG’s Facebook Rare Disease Day fundraiser. Every day we go without treatment, our friends lose skills and abilities they fight so hard to gain. Some have even lost their lives. Thanks to people like you, KIF1A.ORG funds research powered to rapidly develop treatment for KAND.

Don’t have Facebook but want to donate today? No problem! Click here to donate. Thank you for supporting our mission.

Superhero Stories

KIF1A superheroes from around the world share their stories of diagnosis, struggles, and hope. Check out the new stories added in honor of Rare Disease Day!

Living With KAND

KIF1A superheroes and their mothers from the same region on a play date.

These three families have three very important things in common: their children’s diagnosis, gene variant, and location! As part of Rare Disease awareness, three KIF1A families share their unique story as a reminder of how important connections are for the KIF1A community. Check out this unbelievable story in our newest Living With KAND blog post.

Research Highlights

Community Highlights

Frequently Asked Questions

This new resource is now available for newly diagnosed families as well as other KIF1A community members who are seeking answers to KIF1A-related questions. Answers to the most common questions asked about the KIF1A gene, treatment, and more can be found here.

KIF1A in the News

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

Anderson’s Story

KIF1A Superhero Anderson’s family’s live interview on talk radio about KAND.

Colbie’s Story

Colbie’s family submitted this beautiful story of Colbie’s journey to Love What Matters.

Hoyt’s Story

Hoty’s family reached out to their local news to spread awareness about his recent diagnosis.

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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