Top FDA Vaccine Official Resigns, Citing Kennedy’s ‘Misinformation and Lies’ Dr. Peter Marks, a veteran of the agency, wrote that undermining confidence in vaccines is irresponsible and a danger to public health.

www.nytimes.com/2025/03/28/h...

How Measles Hacks the Body—and Harms Its Victims for Years The virus is the most contagious in the world, exploiting the human body's immune system to spread with extreme agility and harming its victims for years.

If anyone you know needs reminding of why vaccines are important, take a closer look at what happens if get the measles (which, if you're not vaccinated and you encounter a contagious person, you are almost guaranteed to catch). #SOTU buff.ly/W6zwuKk

You have “good insurance” through your job?
Well your pediatrician’s office could fold and the [oncologist, neonatologist, critical care, pediatric surgeon, pulmonologist, infectious diseases, nephrologist, etc] that your child needs may not be there anymore when half their payment base collapses.

Headed home from the meeting of medical school pediatric chairs - many of them also Chief Medical Officers for children’s hospitals.

so much at stake for the health of children- all children

Does that mean included in attending or speaking in sessions

Congress is about to cut #Medicaid by $880 billion. CALL THESE REPS. They are vulnerable--close margins in their elections and with lots of people in Medicaid in their districts. You may call the Capitol Switchboard at (202) 224-3121. List below. Call now and all day tomorrow. 1/

And most of all, if you know someone being attacked, targeted because because of who they are, or told they don't belong, STOP. Tell them they belong here. Tell them they are loved.

If you are lost or confused or overwhelmed, REST. Then get up and get back at it. Even if you can only say, "This is wrong. I don't support this." Say it quietly to people. Start conversations.

If you are not in a position to fight back, contact 3 people you see fighting & say, I see you. Thank you. Keep going.

If you are in a position to fight back, fight back.

Pass it on.

I appreciate researchers for advancing science, but I’ve learned they don’t always have non-bias views which can create a negative effect on the community. Don’t hype up one study and not other ones just because you aren’t directly involved in all of them.

It’s funny how researchers sometimes claim they know more than patients who live everyday with a rare disease. I understand they do research but they aren’t the ones facing the challenges of living with the disease.

Now we just need to start clinical trials in patients who are pre-symptomatic. Hopefully these biomarkers can help make the case.

It’s unfortunate to see members of congress thinking people can magically get healthy without the proper guidance and affordable resources. What we need is to hold health insurance companies more accountable where they actually cover healthcare costs.

Very shocking to see this, especially if it’s for a rare disease with limited or no other treatment options. 18 months can make or break someone’s life.

Yes I agree that there’s a certain way to solicit funding for research.

Thanks for sharing. There’s a lot of research happening in HD (and ALS) but we need better outcome measurements so we can offer trials to participants earlier. This is especially for those who are pre-symptomatic.

This means I need to actually post more than every 10 months 🙃

Perhaps 2025 is the year where I share more about my advocacy efforts here rather than on Twitter/X.

It’s sad seeing patient advocacy groups exploiting rare disease day by asking for donations. The point is to raise awareness through community stories, not solicit funds.

I don’t understand how it’s been 30 years since the HD gene was discovered and we still don’t have any treatment options.