Dr. Wendy Chung in the News

Dr. Wendy Chung in the News

Congratulations to our lead researcher Dr. Wendy Chung for being named chief of the Division of Clinical Genetics in the Department of Pediatrics at Columbia University Irving Medical Center!

Read More
Community Call to Action: Urge Congress to Save NIH Funding

Community Call to Action: Urge Congress to Save NIH Funding

KIF1A Families and Friends across the United States: On Friday, December 6, we launched an urgent message to Members of U.S. Congress regarding NIH research funding that rare disease communities like ours are depending on for life-changing and life-saving treatment. There is a very real chance that money allocated to researching rare diseases like KIF1A…

Read More
Urgent Message from KIF1A Families: We Need NIH Funding

Urgent Message from KIF1A Families: We Need NIH Funding

Members of Congress, We are waiting for NIH funding, but our children who are battling a rare neurodegenerative disorder are running out of time. The continuing resolution that the NIH is currently operating under harms the rare disease community by blocking critical funding for scientific research. We need you to pass a full-year budget that…

Read More
No Time to Wait for #GivingTuesday

No Time to Wait for #GivingTuesday

This week we were going to post a “Save the Date” for #GivingTuesday, which is supposed to be held on December 3rd. But last week we lost KIF1A warrior Lhassa, bringing us another painful reminder that KIF1A families are running out of time. We have no time to wait for #GivingTuesday. We need a KIF1A…

Read More
#WeTackleRare, Do You?

#WeTackleRare, Do You?

What if we transformed the way our society views, funds, and engages with rare disease research? What if we lifted up scientists and doctors the same way we lift up professional athletes? What if we supported the world’s best and brightest researchers working on the next breakthrough treatment? The community behind #WeTackleRare is determined to…

Read More
Day One

Day One

By Kathryn AtchleyPresident, KIF1A.ORG KIF1A Community, I’m writing this on the first day of my full-time position as President of KIF1A.ORG. I thank all of the families, friends and everyone who believes in our mission for making this new day possible. Your generosity, encouragement and engagement will fuel the next chapter of progress at KIF1A.ORG….

Read More
#WeNeedAKat

#WeNeedAKat

We are proud to announce that KIF1A.ORG just concluded our first KAND Family & Scientific Engagement Conference at Columbia University Medical Center. Since 2017, our community has made great progress, and experienced incredible heartache. The search for a brighter future is why we are #relentless in our mission to urgently find treatment for our children and loved ones with KIF1A Associated Neurological…

Read More
Meet the New KIF1A.ORG

Meet the New KIF1A.ORG

Today we relaunched our home at KIF1A.ORG. This new digital platform makes it easier for the global KIF1A community of families, researchers, clinicians, partners and supporters to advance our mission: Improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure. When KIF1A.ORG was established in 2017, there were fewer than…

Read More

Cost Analysis of Starting a Rare Disease Foundation

By Luke Rosen Originally published August 31, 2017 As our foundation thrives, more families with KIF1A find our community, and scientific discovery is taking flight, an important conversation emerges about how family and patient-led foundations start — and if it’s possible to facilitate the discovery of treatment for rare disease. A large part of that…

Read More
The Forgotten Amendment: A Newborn’s Right to Whole Exome Sequencing

The Forgotten Amendment: A Newborn’s Right to Whole Exome Sequencing

By Luke Rosen On December 18, 2014, President Obama signed into law an amendment to the Newborn Screening Saves Lives Reauthorization Act of 2014 giving the Secretary of Health and Human Services authority to regulate newborn screening tests. Before this amendment was passed, newborn screening polices varied from state to state. The amendment included new tracking…

Read More