If you value clinical research, disease control, and/or patient care...

[lgelb]

You might want to dial up the US Capitol switchboard: 202 224 3121, ask for the office of your Senator or Congressional representative, and give whoever answers the phone a little ALS context for the forthcoming confirmation votes and other measures to come.

Already, thousands of scientists in the middle of their research are getting pink slips, CDC updates are being held back and datasets scrubbed/removed, large swathes of disease control are being obliterated, clinical research centers can't order supplies, Medicaid portals are down, payments to states for health services have been cut off.

The position of anyone with a rare disease does not look good. Besides the impact on research, home health and clinics that don't have staff because they don't have money will not be there to help you, and the infrastructure that helps protect you, your caregivers, and your health care resources from infectious diseases is being gutted.

And those of you active in "patient advocacy groups" might consider that silence means consent.

 

[KimT]

I'm active in both ALS and Ehlers Danlos groups. We're all afraid, but we fight. We call, write, and follow real news.

Thanks for the reminder.

 

[rhm1119]

Amen