When Gary Landsman prays, he imagines he is in Israel and his sons Benny and Josh are running toward him. They are wearing yarmulkes, and the cotton fringes called tzizit fly out from their waistbands. He opens his arms ready for a tackle.
The reality is Benny and Josh both have Canavan disease, a fatal inherited brain disorder. They are buckled into wheelchairs, don’t speak, and can’t control their limbs.
On Thursday, April 8, in Dayton, Ohio, Landsman and his family rolled the older boy, Benny, into a hospital where over several hours, neurosurgeons drilled bore holes into his skull and injected trillions of viral particles carrying the correct version of a gene his body is missing.
The procedure marked the climax of a four-year quest by the Landsman family, who live in Brooklyn, New York, to obtain a gene therapy they believe is the only hope to save their kids.
MIT Technology Review first profiled the Landsmans’ odyssey in the cover story of our 2018 special issue on precision medicine. Advances in gene therapy technology are making it possible to treat genetic diseases like hemophilia. But because Canavan is an ultra-rare disease, few companies are working on a cure. So the family financed the daring gene treatment on their own, using funds they raised online.
Impressive advances in genome sequencing, gene replacement, and gene editing mean, in theory, thousands of rare genetic diseases could be treated. But because companies aren’t leading the way, parents say, they are being forced to embark on multimillion-dollar quests to finance the needed experiments. Adding to the ethical dilemma: in some cases, parents are designating their own children as the first recipients.
The trial in Dayton, for instance, is prioritizing children whose families have been able to raise funds to underwrite the experiment, whose costs so far are close to $6 million. “It raises the eternal equity question of who gets access to trials and who doesn’t,” says Alison Bateman-House, a bioethicist at New York University who is studying ethical issues in pediatric gene-therapy trials.
The Landsman family has raised more than $2 million, and families from Russia, Poland, Slovakia, and Italy have also used cash donations to secure spots in the trial. A Russian family even posted a copy of an invoice for “gene-therapy treatment” in the amount of $1,140,000, which included $800,000 to offset costs of manufacturing the
By: Antonio Regalado
Title: This family raised millions to get experimental gene therapy for their children
Sourced From: www.technologyreview.com/2021/04/13/1022210/gene-therapy-expensive-treatment-genetic-diseases/
Published Date: Tue, 13 Apr 2021 10:00:00 +0000
Did you miss our previous article…
LATAM crypto exchange Bitso and FMF launch NFT of Mexico’s National Team jerseys
Bitso, a leading cryptocurrency platform operating in Latin America, and the Mexican Football Federation (FMF), today announced the joint launch of the first collectible NFT of the Mexico National Team’s jerseys that was acquired in cryptocurrencies.
This morning through their social media platforms, the FMF and Bitso announced the opportunity to acquire the new official National Team fan jerseys ahead of the team’s participation in the 2022 World Cup. In just 20 minutes, the entire collection sold out.
The NFTs of the jerseys have an exclusive design for the metaverse – each is unique on the blockchain and can be resold by its owner in subsequent transactions.
The collection consisted of 100 official physical jerseys, each with a corresponding NFT version of the jersey that fans’ avatars can wear within the Decentraland metaverse. Each physical and NFT jersey set sold for the equivalent of $1,800 MXN in ethers.
“Our mission is to make cryptocurrency useful in the everyday life of Mexicans; we are committed to spreading the technology through innovative opportunities that help people throughout the country familiarize themselves with this new world. We are very excited to offer the incredible, historic opportunity for the fans of our National Team so that through their Bitso account, they can wear the colors of the National Team on and ‘off’ the field in the metaverse.”
– Bárbara González Briseño, General Director of Bitso México
Created by Bitso, the virtual jersey sports the official colors of Mexico and the new National Team shield, characteristics that will make it stand out when users wear it in the virtual world of Decentraland.
The post LATAM crypto exchange Bitso and FMF launch NFT of Mexico’s National Team jerseys appeared first on CryptoNinjas.
Title: LATAM crypto exchange Bitso and FMF launch NFT of Mexico’s National Team jerseys
Sourced From: www.cryptoninjas.net/2022/07/29/latam-crypto-exchange-bitso-and-fmf-launch-nft-of-mexicos-national-team-jerseys/
Published Date: Fri, 29 Jul 2022 15:19:02 +0000
Did you miss our previous article…
Long-running crypto exchange EXMO unveils “lively” rebrand amidst growth
EXMO, a crypto exchange platform operating since 2014, announced this week a rebranded visual identity with includes a new logo, brand colors, and design features. This new branding comes as EXMO continues to grow its crypto platform while also seeking to expand its presence in other jurisdictions.
Some new developments underway at EXMO:
Soon, users will be able to earn passive income from EXMO’s new staking platform.Plans to launch an EXMO crypto debit card.Expansion of its services in international markets with the opening of offices in Poland and Lithuania.
EXMO’s new logo
The rationale for the re-brand:
“At EXMO, we have a vision of a world where crypto is in every wallet. Hassle-free. We want to achieve this by making crypto as simple and accessible to everyone as possible. And we know that you already appreciate EXMO for offering user-friendly services and helpful support. Also for the opportunity to trade anywhere and anytime, closing deals in just a few taps. Such important changes required a rethinking of our corporate style, which has long needed a massive upgrade. So today we are introducing a new brand identity for EXMO with a completely new visual concept. We are launching a new logo, brand colors, and design elements. Our key design principles are simplicity, boldness, and a pinch of fun. But most importantly, we have changed our logo. Simple and easily recognizable, it represents the humanity of our brand. The logo stands out due to the wavy letter ‘m’ which symbolizes exchange rate charts and also resembles a spring that will launch you into the crypto world.”
– The EXMO Team regarding the re-branding
The post Long-running crypto exchange EXMO unveils “lively” rebrand amidst growth appeared first on CryptoNinjas.
Title: Long-running crypto exchange EXMO unveils “lively” rebrand amidst growth
Sourced From: www.cryptoninjas.net/2022/07/26/long-running-crypto-exchange-exmo-unveils-lively-rebrand-amidst-growth/
Published Date: Tue, 26 Jul 2022 08:10:38 +0000
Did you miss our previous article…
Stitching together the grid will save lives as extreme weather worsens
The blistering heat waves that set temperature records across much of the US in recent days have strained electricity systems, threatening to knock out power in vulnerable regions of the country.
The electricity has largely stayed online so far this summer, but there have been scattered problems and close calls already.
Heavy use of energy-sucking air-conditioners is the biggest problem. But intense heat can also reduce the output of power plants, blow transformers, and force power lines to sag. Severe droughts across large parts of the country have also significantly reduced the availability of hydroelectric power, according to the North American Electric Reliability Corporation (NERC).
It’s unlikely to get better soon. A number of grid operators may struggle to meet peak summer demand, creating the risk of rolling blackouts, the NERC report notes.
The nation’s isolated and antiquated grids are in desperate need of upgrades to keep the lights, heat, and air-conditioning on in the midst of extreme weather events that climate change is making more common, severe, and dangerous. One clear way to ease many of these issues is to more tightly integrate the country’s regional grids, stitching them together with more long-range transmission lines.
If electricity generated in one area can be more easily shared across much wider regions, power can simply flow to where it’s needed at those moments when customers crank up air-conditioners en masse, or when power plants or fuel supply lines fail amid soaring temperatures, wildfires, hurricanes, or other events, says Liza Reed, a research manager focused on transmission at the Niskanen Center, a Washington, DC, think tank.
The problem is it’s proved difficult to build more long-range transmission and grid interconnections for a variety of reasons, including the permitting challenges of erecting wires through private and public lands across cities, counties, and states and the reluctance of local authorities to forfeit control or submit to greater federal oversight.
The case of Texas
The unreliability of the US grid is not a new problem. Severe heat and winter storms have repeatedly exposed the frailty of electricity systems in recent years, leaving thousands to millions of people without power as temperatures spiked or plunged.
One of the fundamental challenges is that the grids today are highly fragmented. There are three main electricity networks within the US: the Eastern Grid, the Western Grid, and the Electric Reliability Council of Texas (ERCOT). But there are numerous regional transmission organizations within those first two systems, including the California Independent System Operator, Southwest Power Pool, PJM Interconnection, New York ISO, and more.
These grids form a complex web of networks operating under different regulators, rules and market structures, and often with limited connections between them.
A variety of regional transmission organizations oversee different parts of the nation’s aging and fragmented grids, which operate under different rules and with often limited connections between them.
ERCOT is especially isolated, in part because of the desire among local politicians, citizens, and power companies to avoid added competition, the hassle of following other states’ rules, and oversight from the Federal Energy Regulatory Commission (FERC). But the state offers a case study in why that can be a serious problem amid increasingly harsh climate conditions, Reed says.
The Texas grid operator pleaded with customers several times earlier this month to cut electricity use as blistering summer temperatures created demand surges that threatened to outstrip supply and require rolling blackouts. Low wind conditions, cloud cover, and outages at fossil-fuel power plants added to the strains.
Shutting off the electricity needed to run air-conditioning in triple-digit temperatures
By: James Temple
Title: Stitching together the grid will save lives as extreme weather worsens
Sourced From: www.technologyreview.com/2022/07/28/1056483/stitching-together-the-grid-will-save-lives-as-extreme-weather-worsens/
Published Date: Thu, 28 Jul 2022 08:00:00 +0000
Fashion6 months ago
Julian Schneyder Relaxes with Man About Town
Fashion2 years ago
Steampunk Clothing & Jewelry
Trending Stories2 years ago
Dior Homme Cologne Men’s Fragrance Review
Motor8 months ago
Rodeo Drive Concours d’Elegance Is Back
Baller Awards9 months ago
Dave Chappelle’s camp releases statement after on-stage attack as he cooperates with police
Fashion2 years ago
Best Timepieces To Buy For The Holiday Season
Baller Awards11 months ago
Hugh Grant dismisses those ‘Doctor Who’ rumors
Frontier Adventure6 months ago
A Black Hole can Tear a Neutron Star Apart in Less Than 2 Seconds