Susan Berry
@sab730.bsky.social
Medical genetics and all things for healthy kids. Thoughts my own.
Good news for folks living with alkaptonuria:
FDA OKs Nitisinone for Ultra-Rare Black Urine Disease www.medpagetoday.com/primarycare/...
FDA OKs Nitisinone for Ultra-Rare Black Urine Disease www.medpagetoday.com/primarycare/...
FDA OKs Nitisinone for Ultra-Rare Black Urine Disease
The drug was approved for the reduction of urine homogentisic acid in adults with alkaptonuria
www.medpagetoday.com
June 21, 2025 at 12:11 AM
Good news for folks living with alkaptonuria:
FDA OKs Nitisinone for Ultra-Rare Black Urine Disease www.medpagetoday.com/primarycare/...
FDA OKs Nitisinone for Ultra-Rare Black Urine Disease www.medpagetoday.com/primarycare/...
We need the CDC at full power to protect our children (and us!)
In its flagship journal, the CDC keeps publishing papers after firing scientists who made the research possible www.statnews.com/2025/05/23/c... via @statnews.com
In its flagship journal, the CDC keeps publishing papers after firing scientists who made the research possible www.statnews.com/2025/05/23/c... via @statnews.com
In its flagship journal, the CDC keeps publishing papers after firing scientists who made the research possible
In its flagship journal, the CDC keeps publishing papers after firing scientists who made the research possible.
www.statnews.com
May 23, 2025 at 8:15 PM
We need the CDC at full power to protect our children (and us!)
In its flagship journal, the CDC keeps publishing papers after firing scientists who made the research possible www.statnews.com/2025/05/23/c... via @statnews.com
In its flagship journal, the CDC keeps publishing papers after firing scientists who made the research possible www.statnews.com/2025/05/23/c... via @statnews.com
New test approved for newborns in Minnesota www.twincities.com/2025/05/10/m...
New test approved for newborns in Minnesota
Minnesota newborns will soon be screened for a disease that can lead to delay in developmental milestones, regression of skills, seizures and in some cases death.
www.twincities.com
May 12, 2025 at 10:16 PM
New test approved for newborns in Minnesota www.twincities.com/2025/05/10/m...
Reposted by Susan Berry
Important op-ed essay in @nytimes.com by @yaqiu.bsky.social .
Headline conveys the point, but worth reading the whole thing.
(Point is also known as the Paul, Weiss principle; the appeasement principle; the Senate GOP principle; etc.)
www.nytimes.com/2025/05/08/o...
Headline conveys the point, but worth reading the whole thing.
(Point is also known as the Paul, Weiss principle; the appeasement principle; the Senate GOP principle; etc.)
www.nytimes.com/2025/05/08/o...
May 9, 2025 at 5:59 PM
Important op-ed essay in @nytimes.com by @yaqiu.bsky.social .
Headline conveys the point, but worth reading the whole thing.
(Point is also known as the Paul, Weiss principle; the appeasement principle; the Senate GOP principle; etc.)
www.nytimes.com/2025/05/08/o...
Headline conveys the point, but worth reading the whole thing.
(Point is also known as the Paul, Weiss principle; the appeasement principle; the Senate GOP principle; etc.)
www.nytimes.com/2025/05/08/o...
Reposted by Susan Berry
The CDC updated the numbers of measles cases in the country on Friday. Here's what they say and what it means for public health in the U.S.
Measles math: What to know about 1,001 measles cases across the country
The U.S. Centers for Disease Control and Prevention updated the numbers of measles cases in the country on Friday. Here's what they say and what it means for public health in the U.S.
www.npr.org
May 9, 2025 at 6:35 PM
The CDC updated the numbers of measles cases in the country on Friday. Here's what they say and what it means for public health in the U.S.
Reposted by Susan Berry
Reposted by Susan Berry
"This is an absolutely essential committee for the life of America's babies." -- @sab730.bsky.social, of the University of Minnesota, after an advisory committee on newborn screening was terminated.
www.medpagetoday.com/special-repo...
www.medpagetoday.com/special-repo...
HHS Scraps Advisory Committee on Newborn Screening
Cut comes as new conditions could have been added to a national screening panel
www.medpagetoday.com
April 14, 2025 at 2:31 PM
"This is an absolutely essential committee for the life of America's babies." -- @sab730.bsky.social, of the University of Minnesota, after an advisory committee on newborn screening was terminated.
www.medpagetoday.com/special-repo...
www.medpagetoday.com/special-repo...
Outstanding comments from a true advocate!!!
The volunteer committee advising on newborn screening must be reinstated www.statnews.com/2025/04/24/a... via @statnews.com
The volunteer committee advising on newborn screening must be reinstated www.statnews.com/2025/04/24/a... via @statnews.com
The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
www.statnews.com
April 25, 2025 at 12:21 AM
Outstanding comments from a true advocate!!!
The volunteer committee advising on newborn screening must be reinstated www.statnews.com/2025/04/24/a... via @statnews.com
The volunteer committee advising on newborn screening must be reinstated www.statnews.com/2025/04/24/a... via @statnews.com
Excited to attend the 2025 MpS Newborn Screening meeting here in the University of Minnesota Alumni Center
April 14, 2025 at 11:59 PM
Excited to attend the 2025 MpS Newborn Screening meeting here in the University of Minnesota Alumni Center
Science Won't Save Itself — We Have to Make It Personal www.medpagetoday.com/opinion/seco...
Opinion | Science Won't Save Itself — We Have to Make It Personal
What will it take to convince those who don't spend their lives in hospitals or labs?
www.medpagetoday.com
April 14, 2025 at 7:04 PM
Science Won't Save Itself — We Have to Make It Personal www.medpagetoday.com/opinion/seco...
Reposted by Susan Berry
In our new podcast: Dr Marshall Summar, M.D. joins the podcast to explain why common polymorphisms and basic physiology mean that L-citrulline may have a role in sickle cell disease, bronchopulmonary dysplasia and even asthma.
Listen on Spotify: open.spotify.com/episode/1wtt...
Listen on Spotify: open.spotify.com/episode/1wtt...
March 28, 2025 at 11:19 AM
In our new podcast: Dr Marshall Summar, M.D. joins the podcast to explain why common polymorphisms and basic physiology mean that L-citrulline may have a role in sickle cell disease, bronchopulmonary dysplasia and even asthma.
Listen on Spotify: open.spotify.com/episode/1wtt...
Listen on Spotify: open.spotify.com/episode/1wtt...
Safeguarding the future of biomedical science in the United States: Cell www.cell.com/cell/fulltex...
Safeguarding the future of biomedical science in the United States
NIH’s abrupt decision to cap indirect cost reimbursement at 15% threatens the critical
infrastructure supporting groundbreaking biomedical research in the United States.
This policy jeopardizes Americ...
www.cell.com
March 9, 2025 at 9:57 PM
Safeguarding the future of biomedical science in the United States: Cell www.cell.com/cell/fulltex...
LOOK AT THIS...
Explore this gift article from The New York Times. You can read it for free without a subscription. www.nytimes.com/interactive/...
Explore this gift article from The New York Times. You can read it for free without a subscription. www.nytimes.com/interactive/...
How Trump’s Medical Research Cuts Would Hit Colleges and Hospitals in Every State (Gift Article)
Changes to a key funding formula will reduce research grants at hospitals and universities by billions — and may discourage future research.
www.nytimes.com
February 19, 2025 at 6:40 PM
LOOK AT THIS...
Explore this gift article from The New York Times. You can read it for free without a subscription. www.nytimes.com/interactive/...
Explore this gift article from The New York Times. You can read it for free without a subscription. www.nytimes.com/interactive/...
Programs at risk:
www.nytimes.com/interactive/...
www.nytimes.com/interactive/...
Which Federal Programs Are Under Scrutiny? The Budget Office Named 2,600 of Them. (Gift Article)
The Trump administration ordered temporary freezes in funding for programs spanning virtually every part of the government. Here’s the full list.
www.nytimes.com
February 2, 2025 at 11:14 PM
Programs at risk:
www.nytimes.com/interactive/...
www.nytimes.com/interactive/...
Reposted by Susan Berry
What are urea cycle disorders? Patients with these rare genetic disorders can't metabolize protein properly. If patients are left untreated, toxic ammonia can build up and cause coma, brain damage, death, and long-term disability. Learn more about #UCDs: nucdf.org/about-ucd/wh...
December 4, 2024 at 9:22 PM
What are urea cycle disorders? Patients with these rare genetic disorders can't metabolize protein properly. If patients are left untreated, toxic ammonia can build up and cause coma, brain damage, death, and long-term disability. Learn more about #UCDs: nucdf.org/about-ucd/wh...
Reposted by Susan Berry
An ammonia test can save a life. Here are the key procedures to follow for an accurate result:
checkammonia.com
#UCDs #CheckAmmonia #hyperammonemia #IEMs #raredisease
checkammonia.com
#UCDs #CheckAmmonia #hyperammonemia #IEMs #raredisease
December 6, 2024 at 4:11 PM
An ammonia test can save a life. Here are the key procedures to follow for an accurate result:
checkammonia.com
#UCDs #CheckAmmonia #hyperammonemia #IEMs #raredisease
checkammonia.com
#UCDs #CheckAmmonia #hyperammonemia #IEMs #raredisease