HD Advocate
@hdadvocate.bsky.social
Huntington’s Disease (HD) advocate trying to speed up research. The HD gene was discovered in 1993 and we still don’t have an effective treatment. It’s time to change that.
Reposted by HD Advocate
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
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.
www.wired.com
March 5, 2025 at 3:42 AM
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
Reposted by HD Advocate
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.
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.
March 2, 2025 at 8:03 PM
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.
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.
Reposted by HD Advocate
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
so much at stake for the health of children- all children
March 2, 2025 at 8:03 PM
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
so much at stake for the health of children- all children
Reposted by HD Advocate
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/
February 25, 2025 at 10:12 PM
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/
Reposted by HD Advocate
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.
February 15, 2025 at 6:46 PM
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.
February 15, 2025 at 6:44 PM
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.
New imaging data suggest that subtle changes in the brain can be seen up to two decades prior to symptom onset in patients with #Huntington’s disease.
healthimaging.com/topics/medic...
healthimaging.com/topics/medic...
Brain changes related to Huntington's evident on imaging decades before symptoms emerge
Experts hope their findings offer valuable insights that one day lead to improved interventions aimed at preserving brain function in patients with Huntington's.
healthimaging.com
January 19, 2025 at 12:40 AM
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.
January 3, 2025 at 6:58 PM
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.
Independence Blue Cross in PA restricts coverage for therapies granted FDA accelerated approval, excluding cancer drugs and mandated treatments, for 18 months post-approval.
Pennsylvania Blue Cross insurer restricts coverage of medicines granted FDA accelerated approval
A Blue Cross Blue Shield licensee serving parts of Pennsylvania says it will not cover some therapies granted accelerated approval for at least 18 months after the FDA signs off.
endpts.com
January 3, 2025 at 6:56 PM
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.
This means I need to actually post more than every 10 months 🙃
January 2, 2025 at 12:39 AM
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.
January 2, 2025 at 12:39 AM
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.
March 1, 2024 at 1:05 AM
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.
February 27, 2024 at 1:38 AM
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.