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A Denver family is trying to raise million in order to cure their son with a rare genetic disease. Doctors told Amber Freed that her 2-year-old son is one of 34 people in the world to have this rare neurological genetic disease. “The disease is so rare, it doesn’t even have a name,” Freed said. “It’s called SLC6A1, because that is the gene that it effects.” The disease causes Maxwell to have trouble moving and communicating, and soon it will only get worse. “The most debilitating part of the disease will begin between the ages of 3 and 4,” Freed said. “So, we are in a fight against time.”Maxwell has a twin sister named Riley. “I noticed early on that Maxwell wasn’t progressing as much as Riley,” Freed said. “I noticed he couldn’t use his hands. The doctors told me that every baby can use their hands. That’s when I realized there was something wrong with him.”After multiple visits to the doctor, Freed was able to find a genetic specialist to give Maxwell a diagnosis. “He looked at me and said, ‘Something is very wrong with your son. I don’t know if he’s going to live,’” Freed said. “My soul was just crushed. It was a sadness I didn’t even know existed on earth. You never think something like this could happen. I left my career, and I had no other choice but to create my own miracle and to find a treatment forward to help Maxwell and all those others like him.” Freed searched for scientists trying to create a cure, which she found at the University of Texas Southwestern Medical Center in Dallas. “We’re working with diseases where kids are born with a defective gene,” said Steven Gray, an associate professor at UTSW in pediatrics. “Our approach is to replace that gene to fix the condition at the level of their DNA. We’re taking the DNA that those patients are missing and packaging that into a virus and use that virus as a molecular delivery truck to carry those genes back in their body and fix their DNA.” “It’s a rare disease, no one has ever heard of it,” Freed said. “But one rare disease messed with the wrong mother.” Freed said she has raised million to help with research for the cure and will need an additional million, in order to let Maxwell and many others continue to enjoy life. “I want Maxwell to have every opportunity that children should have in this life,” Freed said. “When he is having a good day, I just try and soak him in as much as I can. We don’t take anything for granted in this house.” If you want to help donate for the cure, you can do so by visiting 2535
A drug that curbs delusions in Parkinson’s patients did the same for people with Alzheimer’s disease and other forms of dementia in a study that was stopped early because the benefit seemed clear.If regulators agree, the drug could become the first treatment specifically for dementia-related psychosis and the first new medicine for Alzheimer’s in nearly two decades. It targets some of the most troubling symptoms that patients and caregivers face — hallucinations that often lead to anxiety, aggression, and physical and verbal abuse.Results were disclosed Wednesday at a conference in San Diego.“This would be a very important advance,” said one independent expert, Dr. Howard Fillit, chief science officer of the Alzheimer’s Drug Discovery Foundation.Although the field is focused on 801
A 2,000-foot-long system created to clean up plastic pollution in the Pacific Ocean is broken and being towed back to port for repair.The Ocean Cleanup System 001, a U-shaped floating barrier created by the organization The Ocean Cleanup, arrived in the Great Pacific Garbage Patch in October.Ocean garbage patches are formed by rotating ocean currents called "gyres" that pull marine debris (litter, fishing gear, and plastic) into one location, according to the 476
A federal jury awarded Planned Parenthood nearly .3 million in damages Friday after finding that anti-abortion activist David Daleiden and his group broke federal and state laws when they secretly recorded employees of the organization.Daleiden, who leads the anti-abortion organization Center for Medical Progress, and co-defendant Sandra Merritt posed as biotechnology workers for a fake company called Biomax Procurement Services in order to secretly record videos of Planned Parenthood employees between 2013 and 2015. The two, who pretended to be seeking tissue from abortions for "medical research," took the secret recordings at conferences and at Planned Parenthood-affiliated clinics in Texas and Colorado, 730
#MeToo is changing American culture and putting weight behind a call for change.The concept built to a movement in 2017 when the New York Times published major allegations against producer Harvey Weinstein. The movement gained steam as more women came forward.Dr. Stefanie K. Johnson is an associate professor of management at the University of Colorado Boulder. She studies workplace sexual harassment against women, among other things, and says #MeToo was a case of strength in numbers.“So the first accuser is always doubted and blamed right?” Johnson explains. “'What was she wearing? What did she do? She has a history of bad behavior.' But when the tenth accuser comes forward with the exact same story, you don't doubt."Johnson and her team started a workplace sexual harassment study in 2016 before the #MeToo movement caught on.The team asked women about their experiences in 2016 and followed up in 2018.They found women reported experiencing fewer sexually harassing encounters at work during those years when compared to earlier studies.The study also found that workplace sexual harassment had less of an impact on womens’ self-esteem and self-worth during that time.Johnson says it could be because the victims knew they weren’t alone."I think most women started to feel like, 'well this isn't really something about me’ or it's something about all women, right?” Johnson says.She adds, “If so many people are experiencing sexual harassment then it can't be something that I did. Unless we all as a gender are doing the same behaviors to deserve it."Despite progress, Johnson says there’s a long way to go.Her study found an increase in gender-based harassment during the study period.“(In) men and women who might have previously sexually harassed ... instead, they know 'I’m not supposed to sexually harass people, this is a big topic' but they're still engaging in the same negative treatment of women,” Johnson says.The #MeToo movement is shifting American culture in other ways, too.A third of workers say it made them change their behavior at work, according to a recent Associated Press poll. The movement is also sparking legal changes to things like non-disclosure agreements.Movement leaders say they aren’t done sparking change. They want to amend federal laws and create protections for victims who come forward. 2350