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Daily Archives: September 20, 2019
1st CF Biosimilar of Dornase Alfa Inhalation Solution Approved in Russia – Cystic Fibrosis News Today
Posted: September 20, 2019 at 3:45 am
A biosimilar of dornase alfa inhalation solution, with the same therapeutic activity asPulmozyme, its reference therapy, was approved foruse in Russia,Selexis and Generium Pharmaceutical announced.
A biosimilar is like a generic formulation of an approved biological treatment in that it is clinically similar to its reference medicine.
Named Tigerase, this is the first dornase alfa biosimilar made available anywhere in the world to treat people with cystic fibrosis (CF). We believe patients will be able to maintain a higher quality of life on our dornase alfa inhalation solution, Dmitriy Kudlay, MD, CEO of Generium, said in a press release.
CF is caused by mutations of the CFTR gene that prevent cells from managing their salt and water balance. This imbalance triggers an accumulation of thick mucus in the organs that include the lungs, resulting in inflammation, repeated bacterial infections, increased scarring (fibrosis), and the possibility of respiratory failure.
Pulmozyme, marketed by Genentech, has been a standard therapy for CF patients since it was first approved in the 1990s. It is a synthetic version of the human deoxyribonuclease I enzyme (or rhDNase I), which selectively breaks down the long strands of DNA sequences that contribute to mucus thickening. Pulmozymes use makes the mucus thinner and easier to cough up.
Used in combination with antibiotics, bronchodilators, and steroids, Pulmozyme can significantly improve airway flow and help prevent bacterial infections.
The new dornase alfa biosimilar was developed using Selexiss SUREtechnology Platform, which uses the companys proprietary, high-performance mammalian cell line (SURE CHO-M Cell Line) to generate higher yields and more stable production of recombinant proteins that can be used as therapeutic agents.
There are currently 122 clinical programs in development utilizing our platform. The increasing number of Selexis-generated research cell banks used in clinical programs, and now a sixth marketed product, continue to validate the value of our scientific innovation, said Igor Fisch, PhD, CEO of Selexis. We are extremely proud of our ability to help our partners address complicated and intractable diseases by developing complex protein therapeutics faster, safer and more cost efficiently.
Generium, a Russian biopharmaceutical company focused on diagnostic tools and therapies that include those for rare diseases, describes itself as the first worldwide to develop and market a biosimilar of dornase alfa.
The orphan drugs market has been growing significantly over the last several years. Biotechnology, as a science, is developing rapidly, providing new products for the treatment of the most severe and rare diseases, Kudlay said.
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Posted: at 3:45 am
Tr, a 24-year-old with CF, wearing his vest for chest physical therapy. Photo via the Cystic Fibrosis Foundation
Birmingham is a leader in cystic fibrosis (CF) research. Thanks to the work of the Cystic Fibrosis Foundation, UAB and Southern Research Institute, those with CF are receiving better treatments and living longer than ever. Learn more about CF and how you can get involved, including the Shoot for a Cure event on October 11.
Cystic fibrosis is a genetic disease that affects the lungs, pancreas, GI system and other parts of the body. People with CF have a defective gene that causes a buildup of mucus in the body, which leads to lung infections and difficulty breathing. Over time, the lungs become damaged, and the damage is irreversible. In the pancreas, mucus buildup can interfere with digestion and result in malnutrition.
According to the Cystic Fibrosis Foundation, more than 30,000 people in the U.S. have CF. Most people are diagnosed by two years of age.
David Cobb, board member of the Alabama Chapter of the Cystic Fibrosis Foundation, was diagnosed with CF as an infant. He explained a typical well day living with the disease.
Each day starts with a two-hour process of medications, hydration, breathing treatments and chest physical therapy, followed by sterilization of all equipment.He takes an additional round of medication at lunchtime and repeats the process again after dinner.
No two days are alike, said Cobb. One day, my family is on standby to see if Ill be admitted to the hospital. Another day, I could help you dig a ditch in the front yard.
Because there are different mutations of CF, typical days and treatment types vary for each person.CF often results in hospitalization for infection.
Modulators, which target the defective gene that causes CF, are the newest treatment option, and hopefully will soon be available to almost 90 percent of those living with CF.
Treatment is geared toward the mutation a patient has, said Elaine Chambless, Senior Director of Development for the Cystic Fibrosis Foundations Alabama chapter. It helps correct the gene thats malfunctioning.
Much of the research goes on in Birmingham at UAB. UAB is home to the Gregory Fleming James Cystic Fibrosis Research Center, which has a clinic for CF patients in addition to research facilities. The center, led by Dr. Steven Rowe, sees about 400 CF patients each year.
Cobb, who lives in Heflin, Alabama, explained that having a CF clinic close to home makes a huge impact. It can be the difference between life and death, he said.
Consider getting involved with the Alabama Chapter of the Cystic Fibrosis Foundation in Birmingham. Their 14th annual sporting clays competition, Shoot for a Cure, is happening on October 11 at Selwood Farm beginning at 8:00 a.m. Buy tickets here.
Cystic Fibrosis Foundation board member and sporting clays event chair, Joel Barber of Vulcan Materials Company, said he decided to get involved with the foundation after a friends child was diagnosed with CF. Since then, Ive tried to do everything I can to add days, weeks and total lifespans to people living with CF, he said.
With connections in the construction and mining industry and dedication to the CF Foundation, Barber, fellow Vulcan employees and CF Foundation staff rally each year to secure sponsorships and participants who are interested in joining forces to help in the fight against CF.
The shoot provides a great networking opportunity for those in the industry and a great way for everyone to help raise funds for the important research going on in Alabama, he said. The sporting clays event has grown each yearlast years event raised just over $100,000.
If you cant make the sporting clays shoot, there is also a Birminghams Finest event for young professionals. Its a competition to see who can raise the most money for the CF Foundation, and fundraising rock stars will be recognized at an event on November 21 in downtown Birmingham.
As treatments continue to be refined, CF patients will be able to live longer lives. If we get kids on the modulators when theyre little, before theres any damage done, they will get to grow old, said Cobb. Theres a lot of hope.
Interested in learning more about CF or the work of the Cystic Fibrosis Foundation? Visit their website.
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Posted: at 3:45 am
NEW YORK--(BUSINESS WIRE)--
Kroll Bond Rating Agency (KBRA) is pleased to announce the assignment of preliminary ratings to 18 classes of CF 2019-CF2 (see ratings list below), a $802.9 million CMBS conduit transaction collateralized by 48 commercial mortgage loans secured by 136 properties.
The collateral properties are located in 26 states, with the top three states represented by Florida (11.9%), New York (11.5%), and California (10.9%). The pool has exposure to all the major property types, with the top three being retail (19.9%), multifamily (18.6%), and office (16.5%). The loans have principal balances ranging from $3.0 million to $68.0 million for the largest loan in the pool, GNL Office and Industrial Portfolio (8.5%), which is secured by 12 single-tenant industrial and office properties located in 10 states that together comprise 2.2 million sf. The five largest loans, which also include Uline Arena (5.2%), Ocean Edge Resort & Golf Club (5.0%), Inland Life Storage Portfolio (4.9%) and Bushwick Avenue Portfolio (4.5%), represent 28.1% of the initial pool balance, while the top 10 loans represent 46.8%.
KBRAs analysis of the transaction incorporated our multi-borrower rating process that begins with our analysts' evaluation of the underlying collateral properties' financial and operating performance, which determine KBRAs estimate of sustainable net cash flow (KNCF) and KBRA value using our U.S. CMBS Property Evaluation Methodology. On an aggregate basis, KNCF was 7.1% less than the issuer cash flow. KBRA capitalization rates were applied to each assets KNCF to derive values that were, on an aggregate basis, 42.5% less than third party appraisal values. The pool has an in-trust KLTV of 99.4% and an all-in KLTV of 106.4%. The model deploys rent and occupancy stresses, probability of default regressions, and loss given default calculations to determine losses for each collateral loan that are then used to assign our credit ratings.
For complete details on the analysis, please see our pre-sale report published at http://www.kbra.com. The preliminary ratings are based on information known to KBRA at the time of this publication. Information received subsequent to this release could result in the assignment of ratings that differ from the preliminary ratings.
Preliminary Ratings Assigned: CF 2019-CF2
Initial Class Balance
Expected KBRA Rating
$100,000,000 - $214,000,000
$218,123,500 - $332,123,500
$5,620,000 - $5,820,0004
$1,900,000 - $2,100,0004
1 The exact initial certificate balances will not be determined until final pricing, however, they are expected to fall within the above ranges; the aggregate initial certificate balance of the Class A-4 and Class A-5 certificates is expected to be approximately $431.1 million. 2 Notional balance. 3 Loan-specific certificates are only entitled to amounts received with respect to The Stanwix Subordinate Companion Loan. 4 The exact initial certificate balances will not be determined until final pricing, however, they are expected to fall within the above ranges; the aggregate initial certificate balance of the SWE and SWRR certificates is expected to be approximately $7.2 million.
To access ratings, reports and disclosures, click here.
Related Publications: (available at http://www.kbra.com)
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About KBRA and KBRA Europe
KBRA is a full-service credit rating agency registered with the U.S. Securities and Exchange Commission as an NRSRO. In addition, KBRA is designated as a designated rating organization by the Ontario Securities Commission for issuers of asset-backed securities to file a short form prospectus or shelf prospectus. KBRA is also recognized by the National Association of Insurance Commissioners as a Credit Rating Provider, and is a certified Credit Rating Agency (CRA) by the European Securities and Markets Authority (ESMA). Kroll Bond Rating Agency Europe Limited is registered with ESMA as a CRA.
View source version on businesswire.com: https://www.businesswire.com/news/home/20190919005561/en/
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Posted: at 3:45 am
Shares of CF Industries Holdings, Inc. CF have gained 21.8% in the past six months. The stock has outperformed the industrys decline of 5.6% over the same time frame.
CF Industries has a market cap of around $11.1 billion. Average volume of shares traded in the past three months was around 2,253.4K. The company has expected long-term earnings per share (EPS) growth rate of 6%.
Factors Driving the Rally
Better-than-expected second-quarter 2019 results as well as upbeat view for 2019 are contributing to the rally in the companys shares.
In the second quarter, the companys adjusted EPS rose more than two-fold year over year to $1.28. The figure also surpassed the Zacks Consensus Estimate of 81 cents.
Net sales rose 15.5% year over year to $1,502 million on the back of higher average selling prices across all major products. It also topped the Zacks Consensus Estimate of $1,373 million.
CF Industries is optimistic about the nitrogen fertilizer industry and expects fundamental factors to be positive in the near and the long term.
The company expects demand for nitrogen in North America to remain strong in the near term, driven by the impact of adverse planting and growing conditions in many parts of the United States in 2019. Historic flooding is expected to reduce corn production in 2019 due to considerably lower planted acres and yields. The company expects these factors to create a strong price incentive for farmers in the United States, which will boost planted corn acres considerably in the next two seasons.
Globally, demand for urea from Brazil and India are expected to stay strong over the next two years. Through the end of June 2019, urea imports to India were 3.5 million metric tons, up 11% year over year, as stated by the company. Moreover, urea imports to Brazil for 2019 are expected to rise.
CF Industries Holdings, Inc. Price and Consensus
CF Industries Holdings, Inc. Price and Consensus
CF Industries Holdings, Inc. price-consensus-chart | CF Industries Holdings, Inc. Quote
Zacks Rank & Key Picks
CF Industries currently carries a Zacks Rank #3 (Hold).
Some better-ranked stocks in the basic materials space are Kinross Gold Corporation KGC, Alamos Gold Inc AGI and Arconic Inc ARNC, all sporting a Zacks Rank #1 (Strong Buy). You can seethe complete list of todays Zacks #1 Rank stocks here.
Kinross has an expected earnings growth rate of 160% for 2019. The companys shares have surged 66.8% in the past year.
Alamos Gold has projected earnings growth rate of 320% for the current year. The companys shares have rallied 33.6% in a years time.
Arconic has an estimated earnings growth rate of 50% for the current year. Its shares have moved up 20.9% in the past year.
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Want the latest recommendations from Zacks Investment Research? Today, you can download 7 Best Stocks for the Next 30 Days. Click to get this free reportCF Industries Holdings, Inc. (CF) : Free Stock Analysis ReportAlamos Gold Inc. (AGI) : Free Stock Analysis ReportKinross Gold Corporation (KGC) : Free Stock Analysis ReportArconic Inc. (ARNC) : Free Stock Analysis ReportTo read this article on Zacks.com click here.Zacks Investment Research
Posted: at 3:45 am
An old adage says business and family dont mix well. Dont tell that to Lauren Albright. At just 27 years old, she is a key player in her familys successful business, Creative Tile Imports in Allentown.
Laurens father, Albert, and grandfather, Albert, Sr., started Creative Tile as a small family business in 1999. Today, Creative Tile has a busy 5,000-square-foot showroom and customers from around the country.
And Lauren, whose grandfather passed away in 2004, joined the company in 2013 and is now part owner of this family legacy, along with her mother Jane and father. Her sister, Olivia, is also part of the business.
Despite the challenges that come with working alongside her parents and sibling, Lauren wouldnt have it any other way.
Lauren Albright, part owner of her familys business, Creative Tile Imports in Allentown, with her dog, Roux submitted
I love it, she says, I really do.
Her job is demanding; there are design consults, international orders to be placed and staff to manage. But, what few Creative Tile customers know is that Lauren also faces the demands of a chronic, life-long illness called Cystic Fibrosis.
An inherited disorder that damages the lungs and digestive system, the disease affects the cells that produce mucus, sweat, and digestive fluids, leaving them prone to infection. She was diagnosed with CF as an infant. But Lauren has survived and thrived in the face of what can sometimes be a terminal diagnosis.
LVB wanted to find out more about this hard-working young woman, and how she successfully juggles the many needs of her health, her career and her tight family life.
Heres how she does it.
You werent always interested in becoming part of the family business. Tell us what you did before coming on board at Creative Tile?
I went to culinary school after high school. After graduating from the Culinary Institute of America, I started a food truck with my sister, Olivia. It was a pie truck, called Sweet and Savory Pies.
We both had to work other jobs in addition to the food truck to get by. I started working with my family. My sister was working at WFMZ-TV. The food truck hours were so crazy, and we both found that we were finding real fulfillment in our other jobs. So we decided to let go of the food truck and I made the family business my focus.
If you had told me as a teenager that I would be working here full time one day, I wouldnt have believed you. But I love it.
As a young woman in a somewhat male dominated tile industry, have you experienced any sexism?
I have experienced some doubt in my abilities by certain contractors. They may have been doing this for 60 years and can be reluctant to believe that the girls know what they are doing. They will call and ask for one of the men. I assure them that we girls know the answers, we really do.
What do you find most challenging and conversely, most rewarding, about managing the family business?
Just the day-to-day work is challenging. We are always trying to get bigger and expand, and Im always trying to keep our staff motivated to keep growing. We have a fantastic staff so they dont need a lot of motivation. We do things like have company get togethers to keep the staffs morale high.
Half of the staff is related to each other, and the others, well, we like to say they are family, too. We want to make sure that everyone is enjoying their job, that they are challenged and happy.
Most rewarding? For me, bringing in new business is an accomplishment and exciting. I love sales.
What is it like to work with your family; to be together all the time?
For me, its great. Family can always be a challenge but I think its challenging to work with any people regardless. But you know these people so well, youve already been working with them for so long, it works. It can be emotional, however. You can feel personally offended by things that you might not from someone you are not related to. We can butt heads from time to time but my mom tends to be a good conflict resolver.
When you arent working, do you try and spend time away from your family to get a little needed space?
No, we actually spend a lot of time together outside of the business, too. We have family dinner every Sunday. We work out together two or three times a week. Family is what we do.
In addition to work, Cystic Fibrosis is a part of your life, too. What do you need to do daily to manage your health?
I have to do two treatments every day, at least: two nebulizer breathing treatments, and then I have to wear this thing called the vest, which shakes you for 20 minutes (to loosen the mucus). Its definitely an added thing to my day. I probably spend an hour and a half on treatments every day.
I used to skip treatments sometimes in high school, but Ive become better at it and more responsible with it as Ive gotten older. I realize how important it is to my health. I work out, in part because it helps you cough. Anything that helps you cough is encouraged.
Have your methods of treatment changed over the years?
Definitely. I need to be better about treatments now. As you get older, your lungs get more scarred from infections from over the years. But now Im part of an experimental treatment for a drug that was just sent for FDA approval. Its been incredible. Its raising peoples lung function.
People are living a lot longer today. They are making a lot of strides. The CF foundation is really good at finding effective medications.
Is CF something that is passed down from your parents?
Lauren Albright, pictured on left, with her family-father Albert, mother Jane, and sister Olivia, outside their family business, Creative Tile Imports in Allentown submitted
Yes, it is genetic. One in 30 Caucasians is a carrier. My sister is a carrier. I have it. My parents are both carriers. Your parents both have to be carriers for you to get it.
My sisters husband is not a carrier, so her kids do not have it.
I will pass on the gene, and my husband is a carrier, but with a more-mild gene, that doesnt always develop CF.
Its a complicated and rare disease, so no one can give you an exact answer on if your child will develop it.
Are customers at work aware that you have CF?
No, I dont really mention it. However I have been on I.V.s before, and have had to do them here. You cant really hide that.
Outside of your hour and a half treatment, is having CF on your mind during the day?
Yes, I used to work even longer crazier hours here, and then one year I got double pneumonia and didnt even know. I thought I just had a cold. I realized I needed to work regular hours, fit in exercise, treatments and rest times.
I feel like I made a life adjustment when I got double pneumonia. I have to deal with this. Its always on your mind. Even every time I eat, its on my mind because I have to take pills to digest my food.
Do the majority of people with CF also work full time?
Lots of people with CF are working full time, but its individual. It depends on your genetics and which infections you have had. Some people are getting double lung transplants in their 20s.
Every year the life expectancy goes up. When I was born, the life expectancy was in your 20s, now its close to 40. There are people living into their 90s. It depends on your case.
I have moderate CF. It worsens as you get older, but because Im on this drug, Ive had significant improvement. Very noticeable improvement.
This drug is to be taken every day, twice a day, and is pretty revolutionary.
Do you think most people with chronic illnesses are afraid to mention it when they apply for jobs? Afraid it might effect if they get hired or not?
It is something CF people worry about a lot. You might not mention it if you were looking to get hired, but at the same time, you can get infections easier, so you would eventually have to tell your employer.
Insurance is a concern as well with CF. I believe in universal health care. If you dont have insurance coverage with CF, I dont know what you would do. Im sure my drugs cost $15,000 a month if not more.
Are you concerned about what might happen with your health 10 years down the road- with work, with family?
The plan is for me to take over the business, but there is always the question of How will my health be?
But 10 years ago I never would have thought I would be on this life changing new drug. What else will come out that is life changing? Its an unpredictable disease. Its hard.
How do you maintain the balance between being an ambitious professional and maintaining your health?
Its hard and Im still learning. I constantly push myself too much, and I notice it and get myself back on track. Health has to be your first focus. You have to be healthy in order to come to work.
Do you ever feel like: Why is this happening to me? How do you get through that?
Of course, especially when I get sick. You have to get over it. There is nowhere to go with it. It wont help you. And at the same time, CF has definitely shaped who I am. I have matured faster. I have had to take on responsibility at a young age.
My disease was mine to handle myself. Im not overwhelmed as much by other things. Ive learned to manage and take on challenging things more easily than others might. For example, I take the responsibility of being given the opportunity to work in this family business very seriously. I never want to be a noose around its neck.
And its exciting to feel passionate about your work. In general, its a great feeling to be so invested in something.
Do you have any advice for other young women starting out in business who may be facing their own hidden challenges?
The biggest key is to believe in yourself. If you are doubting yourself, it shows. You have as much value as any one. You are capable. Feel confident in what you are doing. Thats how you succeed.
Posted: at 3:45 am
A new agreement will give people in Scotland with cystic fibrosis access to the CF combination treatments Orkambi (lumacaftor/ivacaftor) and Symkevi (tezacaftor/ivacaftor) through the countrys health system, according to Vertex Pharmaceuticals, the company that sells both medicines.
The announcement follows a prior rejection by theScottish Medicines Consortium (SMC) in August, in which the agency cited concerns that the cost of the treatments was not proportional to their health benefits.
Despite that first negative outcome, Vertex continued its efforts to ensure patient access through the health insurance system to the two approved therapies. The company has now reached a five-year agreement with SMC.
In addition to giving Scottish people with CF access to Orkambi and Symkevi at little or no cost, the agreement stipulates that Vertex will collect real-world data on the use of these medicines. That data should be used to support any future submissions to the SMC, the agency said.
We would like to thank the Scottish authorities for their partnership and the collaborative and flexible way that we have worked together to find this access solution, Ludovic Fenaux, senior vice president of Vertex International, said in a press release. It means that approximately 400 eligible cystic fibrosis patients in Scotland now have access to Orkambi or Symkevi.
Both Orkambi and Symkevi work by addressing the cause of CF, which is the lack of a working CFTR protein. The cystic fibrosis transmembrane conductance regulator (CFTR) protein helps to maintain the balance of salt and water on many surfaces in the body, such as the surface of the lungs. These medicines employ a one-two punch of getting the CFTR properly processed and placed where it is supposed to go, then keeping it stable and functioning properly once it is there.
Orkambi is specifically designed to reverse the effects of the most common CF mutation, the F508delmutation. Symkevi, known asSymdeko outside the E.U., is not specific to a particular CF-causing mutation. However, the tezacaftor/ivacaftor combination is designed to restore the CTFR proteins function.
Both therapies contain ivacaftor sold alone under the brand name Kalydeco which helps stabilize the CFTR protein once it is at the surface of cells. The other components lumacaftor in Orkambi and tezacaftor in Symkevi are responsible for ensuring the correct folding of CFTR.
NHS Scotland estimates that about 900 people in Scotland have CF, and as many as 1 in 24 carry one mutation in the gene encoding CFTR.
Vertex CF medicines are currently reimbursed in 17 countries globally, including Austria, Australia, Denmark, Germany, the Republic of Ireland, Italy, the Netherlands and Sweden.
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Posted: at 3:45 am
Building projects at three locations in the Chippewa Falls school district are progressing nicely, Business Manager Chad Trowbridge told the school board Tuesday night.
The structure for the new Stillson Elementary school in Lafayette is set, concrete pours are beginning, and brick and exterior fences will begin to be put up within the next month.
At the middle school, workers are starting construction on the roof this week, a new bus loop is being used, site restoration is complete and the interior is being worked on consistently.
At Chippewa Falls High School, work is underway on construction on the second floor, roof installation will be completed over the next few weeks and interior walls are being put up.
Trowbridge said significant progress has been made in the past month at all three locations.
Its been an exciting month, to put it mildly, Trowbridge said. As far as Im concerned, we are making good progress and we are on a good pace. Knock on wood we may be even be a little ahead of schedule. We are pleased with the progress so far.
John Dienger, student representative on the Chippewa Falls school board and a senior at Chippewa Falls High School, said he hasnt heard many students or staff complain about the construction in the three weeks since classes started. He said original concerns such as lack of parking and late arrival at school have been alleviated by earlier arrival times and adaptation to the different landscape at the middle and high school.
In early 2018, a $65 million referendum was approved with 53 percent voter approval to build a new home for Stillson Elementary and make additions and improvements to the existing middle and high school structures.
The building project includes a new 36-acre site in the town of Lafayette, a drastic increase from the current six-acre site. The 30-acre increase will yield more space for a parking lot, playground, athletic fields and more.
The rest of the funds will be used at the middle and high schools. The middle school will use the allocated funds to remodel areas of the building, improve technology and make other upgrades and repairs. The high school will get a new science lab, improved technology and other improvements.
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Posted: at 3:45 am
CHIPPEWA FALLS A Chippewa Falls woman has been charged with making a false 911 report, after she claimed someone was threatening another person with a gun.
Shahannah A. Barnes, 28, 820 Macomber St., was charged with second-degree recklessly endangering safety, making a false 911 report and disorderly conduct.
According to the criminal complaint, the incident happened on Aug. 8 at the apartment complexes in the 800 block of Macomber Street. A woman who turned out to be Barnes told a dispatcher that she could hear a woman yelling for help, and the woman was asking someone to put a weapon down.
Because of the serious nature of the call, officers approached with their guns drawn. However, the man and woman at the apartment claimed there had been no incident at all.
When police looked at who made the call, it was a phone belonging to the man in the apartment. However, the man said his girlfriend, Barnes, had his phone. He admitted he was cheating on Barnes with the woman in the apartment.
When police interviewed Barnes, she admitted she made the false 911 call.
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Posted: at 3:45 am
Born two months premature on Sept. 17, 1999, on the bathroom floor with help from paramedics who weren't sure he or his twin sister would survive, Will Belmonte started life as a "miracle," says his mother, Adrian Belmonte. Twenty years later, Will still works in the miracle realm, as The Will B Foundation raises money to find a cure that will help him and every other person with cystic fibrosis.
"Will B. You can do a lot with that," Will says. "One day, I believe there Will B a cure for cystic fibrosis."
The start of the twins' lives 20 years ago was so dramatic, the Daily Herald wrote a story about it.
When Adrian Belmonte, pregnant with the couple's twins, felt something was wrong, she phoned her husband, Bill, a lawyer who rushed home from work to find a host of police and paramedics already there. A police officer asked Adrian how she was.
"Not good. These babies are coming," she remembers saying. Itasca paramedics Kelly Firestone and Mike Haugh delivered Will and his sister, Alexis, on the bathroom floor. Will was blue until Haugh got him breathing. Alexis was breech, with her head facing the wrong way for delivery.
Wood Dale paramedics, also on the scene, rushed Will to Alexian Brothers Medical Center, followed by Itasca paramedics with Alexis. Roselle paramedics took the mom to the hospital.
"They needed to be baptized. That's how critical they were," Adrian says, following the guidelines of her Catholic faith to have everyone baptized before they die.
"The older we get, the more our parents tell us the story of how we were born," says Alexis. "Wow. It's incredible."
The babies ended up at Loyola University Medical Center in Maywood, where they spent two months in the pediatric intensive care unit. At birth, Will weighed 2 pounds, 9 ounces, and Alexis was only 1 pound, 14 ounces.
They came home in November with a 25-pound monitor and tubes in their noses. Alexis is now a healthy sophomore at the University of Minnesota. Will and a roommate have an apartment as they begin their sophomore years at DePaul University in Chicago. As a toddler he seemed fine.
"I played baseball, football. It never occurred to me that something could be going on," Will says of his childhood. By second grade, Will developed a frequent cough. He had tubes put in his ears, his adenoids removed and periodic bouts of pneumonia.
At age 10, Will was diagnosed with cystic fibrosis, a life-shortening, progressive, genetic disease that affects the pancreas and causes thick mucus to form in the lungs. He takes several medications and uses a vibrating vest for treatments every morning and every evening.
Since his father, a Bloomingdale village trustee and lawyer, was diagnosed with multiple sclerosis at age 30, shortly before the twins were born, Will had seen his parents raise funds to fight MS, and figured they could do the same for CF.
"Hey, why don't we start a foundation and put some good out there," Will remembers asking his parents when he was 12. He came up with the name for The Will B Foundation, and the first fundraiser in 2012 raised $10,000 for the Cystic Fibrosis Foundation. Now, Will's foundation, an official 501(c) (3) charity, has already raised more than a half-million dollars and has a goal of raising $100,000 at "Cocktails to Cure CF" from 6-9 p.m. Oct. 10 at Belvedere Events and Banquets, 1170 W. Devon Ave., Elk Grove Village. To buy a $75 ticket or donate, visit thewillbfoundation.org.
Will says he's inspired by his father's attitude about living the best he can with MS. The dad gets inspiration from his son.
"This kid, he doesn't complain. He does what he's supposed to do," Bill says.
"We're so lucky he's as healthy as he is," Alexis says of her twin. "He's very aware of what he has, and he has a compassionate heart to help others." Will and Alexis always come back for the fundraiser.
The family figures the Will B Foundation will outlive CF. "Let's find this cure and figure out who else needs help," Adrian says.
Will is in the minority of CF patients who don't have digestive problems, but his weight is an issue. While many students add the "Freshman 15" pounds in college, the 5-foot-5 Will went from 133 pounds to just 126 during his first year of college.
"That was a big wake-up call for me," says Will. "I have to constantly remind myself to eat. I need 5,000 calories every day, so I have to make some heavy-duty meals."
His treatments take a couple hours out of each day, and Will says he usually misses one week of classes every winter because of his lung issues. "But I want to be as normal as possible," Will says.
A varsity tennis player as a member of the Lake Park High School class of 2016, Will plays intramural basketball and softball in college. While CF typically gets worse with age, Will says he thinks research can flip that prognosis.
"They're coming out with a drug later this year that is supposed to really improve lung function," Will says. "I don't look too far ahead, and I don't look at the past. I just focus on the day-to-day."
Two decades after barely surviving his premature birth, Will is dedicated to living life to the fullest in spite of CF.
"I don't want the disease to control me," Will says. "I want to control the disease."
Posted: at 3:45 am
The Unionville-Chadds Ford School District overhauledits discipline policy last year. Major changes included flexibility in metingout student punishments so reprimands better suit infractions; mandatoryeducation and counseling for smoking, alcohol, and drug offenses; and a chancefor the rescission of a single suspension from student records. Initially,rescission was deemed important because district policy stated that suspensionsmust be reported on college applications.
At the Sept. 16 school board meeting, directors votedto change policy 216 so that Unionville High School will no longer report anydisciplinary actions on student college applications.
This policy change only impacts how the schooladministration completes each students college application. Students will still have to answer whether ornot they have been suspended on their portion of the form.
Board members spoke both for and against this changeat the three-hour Sept. 9 work session.Just to remind everyone, this does not in any way, shape or form changethe rescission policy that we agreed to a year and a half ago, board memberJohn Murphy said. I did have some concern that this would be conflicting ortaking the effectiveness out of rescission, but after discussions with Dr.Sanville, I understand now that a student has to self-report disciplinaryaction. So if a student is suspended and has a rescission, they in clear consciencecan self-report on the common app that they have not been disciplined. Ipersonally dont feel that a counselor should have an ethical dilemma, becauseto me, a rescission is the same as an expungement. But if they feel it is anethical dilemma on their part, then I support this.
When asked in an email why the counselors have thisethical dilemma while students with a rescinded suspension do not, the districtresponded that, Some counselors feel like it goes against their ethicalstandards of counseling.
Board member Elise Anderson emphasized that studentswill still have to answer the suspension question on their college application,and added, I think that its important to recognize that in our community,many feel this is the jurisdiction of the parents. Our discipline policy, if Iask myself what the purpose of the policy is, is to have a safe environmenthere, and an environment suited for optimal education for all our students. Andif I boil it down to that, I support this change.
Board president Jeff Hellrung said that the revisionsto the discipline policy approved last April ensure that the student pays anappropriate price for their actions. They are still suspended, and they willreceive counseling or perform other educational activities to make up for theiroffense. Accountability is important,and non-reporting doesnt change any of that, Hellrung said. Theyve been accountable, theyve paid a penalty,theyve learned, and theyre moving on, and we are moving on together withthem. Why should high school behavior follow them to college and beyond?
Board member Tom Day opposed the policy change duringthe work session. Day said that offering a chance for rescission should beenough to remedy a one-time student mistake. Our kids are mature enough torealize that discipline comes at a cost, and we have offered them a chance forsecond chances vis-a-vis the rescission policy, but in the event thedisciplinary action is not rescinded, I dont see any reason why we should not report,he said.
Day softened his position when it was time to voteduring the Sept. 16 board meeting. Over the past month, Ive spoken toadministration, Ive spoken to school leadership, and Ive spoken to members ofthe community, Day said. And I understand now the inconsistencies inreporting discipline across the schools in our country and our county vary, andI realize and understand and appreciate the inconsistencies in reportingbetween colleges that have the common application and dont have the commonapplication, and further understand and appreciate the inconsistencies withoutthis policy that would occur within our own district. So with that said, I willvote in favor of this.
The policy change passed 6-2. Board members Bob Sage and Steve Simonsonvoted against it. Carolyn Daniels wasabsent due to a recent surgery.
Hellrung closed the meeting by citing the boardspositive working relationship. I really do appreciate being on this board andbeing able to debate very difficult and sometimes complicated and controversialquestions, he said. And I appreciate the lengths that each board member goesto, whether youve been in favor, or ended up in favor, or opposed, forexample, to policy 216. I reallyappreciate the diligence and conscientiousness that everyone put into it. AsDr. Sanville said, the ability to disagree agreeably has been on display. Ithink our board has been kind of a beacon of civility in a sometimes less-than-civilworld, and Im really appreciative of that.
In other news, Chadds Ford Elementary School PrincipalShawn Dutkiewicz resigned effective Sept 30, 2019 to assume the role of theRadnor Township School Districts Elementary Director of Teaching and Learning.CFE parents were notified on Aug. 26 via an email. The board approved thehiring of Dennis McKnight as the Chadds Ford Elementary School InterimPrincipal at a salary of $700 per day, effective Oct 1.
This is not our first go-around having Dr. McKnighthere, Sanville said. Dr. McKnight has been the interim principal at the highschool, the interim principal at the middle school, and he has also had somestints over in Radnor, which is where he is right now. Were thrilled you canjoin us and be part of the team at Chadds Ford until we can find a permanentprincipal.
Ten Top High Schools in PA, according to US Newsand World Report. The Chester County Press asked if they report suspensions oncollege applications:
1. Masterman,Philadelphia: YES
2. DowningtownStem Academy: YES
3. RadnorHigh School: NO
4. CentralHigh School, Philadelphia: YES
5. ConestogaHigh School, Berwyn: NO
6. StrathHaven High School, Wallingford: YES
7. UnionvilleHigh School: NO, effective 2019
8. NewHope-Solebury High School, New Hope: NO
9. UpperSt. Clair High School, Pittsburgh: NO
10. NorthwestCollegiate Academy, Erie: NO
Kennett High School: Did not respond +
Avon Grove High School: NO
Oxford High School:NO, unless college requires it and parent gives written consent
+ The default is YESunless stated in school policy. While the Chester County Press could not find it in the policy manual, we could not confirm with theschool.