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 will continue to be stalled or cut entirely unless we take action.

Here’s what you can do today:

1 – Find your elected officials



2 – Send an email to your elected officials

You can use the message below as a template:

Dear [Representative/Senator] [       ]:

As my elected official, I hope you will take 2 minutes to watch this video to hear from families who represent 30 million Americans living with a rare disease.

My [child, grandchild, nephew, friend, etc.] is living with a rare neurodegenerative disease called KIF1A Associated Neurological Disorder. There is no treatment. Yet. This disorder can affect every aspect of a child’s life: walking, talking, seeing, learning, sometimes even eating and breathing. It is degenerative. It can be fatal.

Like so many rare communities, we need NIH funding to support our under-resourced and under-researched disorder. Without the NIH, we’re afraid treatment will come too late, or never at all.

We are waiting for NIH funding, but our children are running out of time. As a member of congress, you can help today.

Please approve vital NIH funding for our children. We’re depending on you for life-changing and life-saving treatment for our kids. Please listen to the needs of KIF1A families from across the United States here:

The decisions you make have a direct impact on our ability to find live-changing and life-saving treatment. For children like ours who are fighting a neurodegenerative disorder (think ALS, but in children), we have no time to lose.

Please watch this video:

Thank you,

[insert your name]
[city, state]

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