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 includes an increase in NIH funding.

For more information about how the continuing resolution harms scientific advancement that families like ours depend on, read statements from the American Society of Human Genetics and Research!America.

Members of Congress, let’s talk. Contact us today to learn from your constituents before making a decision that affects the lives of millions of Americans living with a rare disease.  

The KIF1A.ORG Leadership Team

Kathryn Atchley, Parker’s Mom

Luke Rosen, Susannah’s Dad

Shannon Scott, Sadie’s Mom

John Siemer, Lily’s Dad


  1. 1
    Victor Hadad on December 9, 2019

    This funding is crucial for the ongoing research to help these children have life saving cures. Progress is being made but depends on funding from our government to continue and succeed in time to make a difference. This is most important to give researchers the funding to continue the search for life giving cures.

    Please make your vote count for our children and grand children.

  2. 2

    […] Friday, December 6, we launched an urgent message to Members of U.S. Congress regarding NIH research funding that rare disease communities like ours […]

  3. 3

    […] Read the full statement from the KIF1A.ORG leadership team here. […]

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