Natalia Pozuelo

, how can we get congress to listen if we have dismantling of CDC and HHS?
I’ve tried to advocate to my congress people but it isn’t working

@theweekendmsnow.bsky.social love the show btw, im 27 yr old living with rare disease MPS I,
Lysosomal storage disease
& I need researchers to find way to stop my disease progression, but congress doesn’t realize their stopping this research

Take Action - National Organization for Rare Disorders

rarediseases.org/driving-poli...

If anyone has connections with OH senate and DC folks please spread word that Gov DeWine is going to pass bill to eradicate Ohio Rare Disease Advisory Council , a council with no budget & provides advocacy for life saving treatment & access for rare diseases , without this council we have no voice

@velshi.com

Thank you John Harwood for sharing why we need research & how dangerous these cuts are…I too had my life saved from years worth of research at NIH…I had a life saving bone marrow transplant in 2008….it is because of this research I am here…this is very sad to see

Carlos Alcaraz had never come back to win a match after dropping the first two sets.

Until Sunday.

He's the first player to save three match points in a Roland Garros final and go on to win.

Carlos Alcaraz wins French Open final in five sets after saving 3 match points against Jannik Sinner The 22-year-old Alcaraz owns a tour-leading 21-1 record on clay this year and has beaten the 23-year-old Sinner in their past four meetings.

BREAKING: Carlos Alcaraz wins the French Open final in five sets after saving 3 match points against Jannik Sinner.

Ugh….

Quality of life and these cuts at HHS and beyond will only make us the people suffer …..

I am alive today because of research that was funded through federal money, it is tragic that these cuts are happening, and it is tragic that a cure for the disease I live with will not be able to happen in my lifetime because of these cuts….so many people depend on these workers for a better

@stephruhle.bsky.social thank you for being our therapy and voice this week …..

So true !

So trueeee

Thank you

Def didn’t see any of it except on here and substack

Bookmark to save posts and review later , not pin feature but bookmark please and thank u

It is because research that my life was saved as at Duke Children’s Hospital in 2008, & why I’m still here today…we must not cut this essential means of access to current & future treatment for so many

Yes why can’t my state senators email me back for meeting about rare disease as a rare disease legislative advocate with EveryLife Foundation

Thank you Joyce for this

Also thank you for taking time to answer our questions

How can we make sure the disabled community remains protected during this administration…thank you from fellow @aapd-disability.bsky.social alumni and disability index next gen leader alumni and EveryLife foundation rare disease advocate

A life saving bone marrow transplant is only reason I am here today and by cutting services that they are cutting through NIH, FDA, & HHS my future is at stake , my life , my access to treatment

As someone living with neurological muscular progressive genetic disorder …my livelihood depends on research…& time is precious to provide me more time more life, if they keep cutting these services my livelihood is at stake
Thank you Jaime for your leadership

good for you…this is getting very strange…people aren’t going to realize the guests are distractions before it’s too late

Agreed …also he seems to be hanging on to the podium for dear life

This is getting very uncomfortable the way they stop and clap for every sentence he says…using these guests to turn this into a show…when they aren’t helping the people ….but worried many Americans won’t see past these lies & believe all is going to be fine

Agreed…the constant getting up to clap for every sentence said is giving 1930s Nazi vibes

As someone living with a neuro muscular skeletal progressive genetic disorder I appreciate this guest - only future research will save my life ahead

Agreed

Thank you for being our voice during these times