Philippine Cerebral Palsy http://philippinecerebralpalsy.org/ Mon, 10 Jan 2022 22:49:57 +0000 en-US hourly 1 https://wordpress.org/?v=5.8.1 https://philippinecerebralpalsy.org/wp-content/uploads/2021/11/cropped-icon-32x32.png Philippine Cerebral Palsy http://philippinecerebralpalsy.org/ 32 32 Freiman, Lopez & Murphy Bill allowing residents to use disability benefits to pay for transportation costs to governor https://philippinecerebralpalsy.org/freiman-lopez-murphy-bill-allowing-residents-to-use-disability-benefits-to-pay-for-transportation-costs-to-governor/ https://philippinecerebralpalsy.org/freiman-lopez-murphy-bill-allowing-residents-to-use-disability-benefits-to-pay-for-transportation-costs-to-governor/#respond Mon, 10 Jan 2022 22:31:00 +0000 https://philippinecerebralpalsy.org/freiman-lopez-murphy-bill-allowing-residents-to-use-disability-benefits-to-pay-for-transportation-costs-to-governor/

Freiman, Lopez & Murphy Bill allowing residents to use disability benefits to pay for transportation costs to governor

(TRENTON) – Recognizing the importance of equal access to transportation for residents with disabilities, a law sponsored by Assembly Democrats Roy Freiman, Yvonne Lopez and Carol Murphy would allow the use of disability benefits for pay some shipping cost.

Under the bill (A-1158 / S-1934), the Department of Social Services (DHS) would be required to authorize anyone receiving state and / or federal government benefits for temporary or permanent disability to use these services to pay for transport services of a registered transport network company.

Companies that fall into this category include Uber and Lyft, which are available in many communities in New Jersey and are often easier / faster to book and cheaper than taxis, and able to get passengers closer to their destination than taxi drivers. public transport.

The measure would require DHS to work with the Department of Transportation to develop a public awareness campaign to inform disability benefit recipients of their new transportation options.

After the legislation was unanimously passed by the Plenary Assembly on Monday, sponsors Freiman (D-Somerset, Mercer, Middlesex, Hunterdon), Lopez (D-Middlesex) and Murphy (D-Burlington) released the following joint statement :

“Almost 25 millions American adults have a disability that limits their ability to travel in one way or another, while 12-20% of them live in households without a vehicle. These restrictions make it difficult for people with disabilities to get to their appointments, visit friends and family, go to the store, and ultimately participate in our society.

“Whenever public transport and taxis are insufficient, residents with disabilities must be able to turn to other modes of transport. Now that many companies in the transportation network have worked to incorporate accessibility features, they can be an invaluable resource for people with disabilities.

“Allowing residents to use their disability benefits to pay for these services is absolutely essential to ensuring equitable access to transportation across our state. ”

After being passed by the full Senate, the bill now goes to the governor.

(Visited 3 times, 3 visits today)

]]>
https://philippinecerebralpalsy.org/freiman-lopez-murphy-bill-allowing-residents-to-use-disability-benefits-to-pay-for-transportation-costs-to-governor/feed/ 0
Home help shortage in the health care district that includes North Tipperary https://philippinecerebralpalsy.org/home-help-shortage-in-the-health-care-district-that-includes-north-tipperary/ https://philippinecerebralpalsy.org/home-help-shortage-in-the-health-care-district-that-includes-north-tipperary/#respond Mon, 10 Jan 2022 17:42:44 +0000 https://philippinecerebralpalsy.org/home-help-shortage-in-the-health-care-district-that-includes-north-tipperary/

Sinn Féin TD for Tipperary Martin Browne called on the government to act urgently to ensure caregivers are available to help those in need of support at home, after new figures have revealed the number of people in the area health care center that covers the Mid-West, including northern Tipperary. , found themselves without essential caregivers.

Figures released to Sinn Féin’s Disability and Caregiver spokesperson Pauline Tully by the HSE revealed that 461 people are waiting for a caregiver to be assigned despite approval.

Nearly 5,000 people across the state are waiting for help, figures show.

MP Browne said figures released by the HSE in response to a parliamentary question revealed a growing crisis over home help in Ireland.

“A total of 461 people have been approved for a caregiver at CHO3, which includes northern Tipperary, but despite this, no caregivers have been assigned due to severe shortages,” he said. “This is unacceptable.”

MP Browne said Sinn Féin had for many years warned of a looming crisis in the home care system as too many people in need of home care were not getting the hours they needed.

“This crisis escalated during the pandemic, but the government has consistently failed to properly plan and implement contingencies,” he said.

TD Cashel said behind every statistic are real lives and real people who are being abandoned by the state.

People with disabilities and the elderly should have the right to lead full and independent lives and to receive sufficient state support to meet their needs, said MP Browne.

In response to the parliamentary question, the government acknowledged that “factors such as the employment contracts offered and the employment conditions offered are a factor in the recruitment challenges faced by the sector”.

“I call on the government to engage with private, community and voluntary home care providers to encourage the progression of the terms and conditions they offer their staff and align them with those employed directly by the HSE,” said he added.

MP Browne further called on the government to reintroduce priority PCR testing for healthcare workers, including home care workers, as well as relax income and working hours limits for care workers. part-time home receiving social assistance benefits in order to quickly introduce additional capacity for the home care sector.

“This is not good enough for people here in North Tipperary and across the state. The government must stop hiding its head in the sand on this issue and finally prioritize people with disabilities to ensure they get the support they deserve, ”TD said.

]]>
https://philippinecerebralpalsy.org/home-help-shortage-in-the-health-care-district-that-includes-north-tipperary/feed/ 0
TrialSpark licenses sprifermin, an investigational first-class disease-modifying treatment for osteoarthritis, from Merck KGaA, Darmstadt, Germany and announces formation of High Line Bio https://philippinecerebralpalsy.org/trialspark-licenses-sprifermin-an-investigational-first-class-disease-modifying-treatment-for-osteoarthritis-from-merck-kgaa-darmstadt-germany-and-announces-formation-of-high-line-bio/ https://philippinecerebralpalsy.org/trialspark-licenses-sprifermin-an-investigational-first-class-disease-modifying-treatment-for-osteoarthritis-from-merck-kgaa-darmstadt-germany-and-announces-formation-of-high-line-bio/#respond Mon, 10 Jan 2022 13:00:00 +0000 https://philippinecerebralpalsy.org/trialspark-licenses-sprifermin-an-investigational-first-class-disease-modifying-treatment-for-osteoarthritis-from-merck-kgaa-darmstadt-germany-and-announces-formation-of-high-line-bio/

-High Line Bio will focus on the treatment of osteoarthritis, a disease affecting over 230 million patients worldwide and without disease-modifying therapy

-High Line Bio will leverage TrialSpark’s unique ability to develop treatments faster and more efficiently for patients than traditional pharmaceutical companies through its proprietary technology-based clinical trials engine

-TrialSpark continues to rapidly advance its strategy of acquiring, licensing and investing in clinical-stage assets to be developed in-house or in partnership with biotechnology and pharmaceutical companies

NEW YORK, January 10, 2022 / PRNewswire / – TrialSpark today announced the formation of High Line Bio following the acquisition of the worldwide rights to sprifermine from Merck KGaA, Darmstadt, Germany. Sprifermin is a leading potential disease-modifying anti-FGF 18 monoclonal antibody that is being evaluated as a potential treatment for osteoarthritis (OA) by promoting cartilage growth. The loss of cartilage is an important component in the development of osteoarthritis, a degenerative disease of the joints that is one of the greatest unmet medical needs among musculoskeletal disorders. There are no approved disease-modifying therapies for osteoarthritis, which is a leading cause of disability and impaired quality of life affecting more than 230 million patients worldwide.

(PRNewsfoto / TrialSpark)

Sprifermin promotes the growth of cartilage and could be a potential disease modification treatment for osteoarthritis.

As the first monoclonal antibody to demonstrate cartilage growth in a controlled clinical study, Sprifermin is at the forefront of next-generation regenerative medicine with the potential to modify the underlying pathology of osteoarthritis. To date, Merck KGaA, Darmstadt, Germany completed three clinical trials in more than 800 patients, including 549 patients FORWARD Phase 2 Trial. TrialSpark will be fully responsible for the future development and commercialization of sprifermin. As part of the Merck KGaA, Darmstadt agreement, Germany will receive an upfront payment as well as an interest in High Line Bio, and is eligible for clinical and commercial milestone payments in addition to royalties on future net sales. Full financial terms were not disclosed.

“We believe that sprifermin has the potential to be the first approved disease-modifying therapy for the millions of patients with osteoarthritis,” said Gavin Corcoran, chief medical officer at TrialSpark. “Despite recent advances in our understanding of the pathogenesis of osteoarthritis, clinical development has lagged behind other rheumatic diseases. TrialSpark’s proprietary clinical trial engine is uniquely positioned to address the historic challenges of osteoarthritis development, including lengthy studies requiring large numbers of patients, designing optimal pain parameters, and identifying key subgroups of patients most likely to benefit from it. “

TrialSpark’s ability to leverage its technology-based testing engine to execute faster and more efficient drug development allows it to pursue programs in indications – such as osteoarthritis – that have historically demanded testing. longest and most expensive clinics. High Organic line will leverage TrialSpark’s proprietary clinical trial engine to develop sprifermin in osteoarthritis using a data-driven approach to identify novel biomarkers, endpoints and patient subgroups most likely to benefit from therapy. TrialSpark is also partnering with industry leaders such as SomaLogic to leverage precision genomics and proteomics platforms to identify key biomarkers and stratify patients using fluid samples. synovial membrane from previous clinical studies using AI and machine learning approaches. Beyond sprifermin, High Line Bio is also planning complementary licensed products to build a differentiated pipeline focused on osteoarthritis and regenerative medicine.

This transaction is part of TrialSpark’s strategy to create new companies in key therapeutic areas such as inflammatory and autoimmune diseases. To date, TrialSpark has successfully licensed multiple assets, deploying capital and supporting programs across a wide range of therapeutic areas including CNS, Dermatology and Inflammation as part of its mission to bring new treatments to patients faster and more effectively.

As part of its business development and investment strategy, TrialSpark uses balance sheet capital to acquire or license assets, leveraging its in-house clinical development engine to conduct trials much faster and more efficiently than the industry. . In addition to traditional asset licenses and acquisitions, TrialSpark transactions may also include equity investments in private and public biopharmaceutical companies, strategic collaborations to jointly finance and develop assets, and alternative structures, including syndication with other investors.

TrialSpark actively pursues partnerships with small biotech companies and large pharmaceutical companies through flexible and creative collaborative structures, maximizing the potential value of drug candidates for all stakeholders through faster and more clinical development programs. effective. TrialSpark focuses on early to mid-stage clinical assets across a range of therapeutic areas, with a focus on chronic diseases that are treated outside of a hospital setting.

About Merck KGaA, Darmstadt, Germany
Merck KGaA, Darmstadt, Germany, a leading company in the field of science and technology, operates in the fields of health, life sciences and electronics. Approximately 58,000 employees work every day to make a positive difference in the lives of millions of people by creating happier and more sustainable lifestyles. From advancing gene-editing technologies and discovering unique ways to treat the most difficult diseases, to device intelligence, the business is everywhere. In 2020, Merck KGaA, Darmstadt, Germany, achieved a turnover of 17.5 billion euros in 66 countries.

The company owns the worldwide rights to the name and trademark “Merck” internationally. The only exceptions are United States and Canada, where the business areas of Merck KGaA, Darmstadt, Germany operate as EMD Serono in healthcare, MilliporeSigma in life sciences, and EMD Performance Materials. Since its founding in 1668, scientific exploration and responsible entrepreneurship have been at the heart of the company’s technological and scientific advances. To this day, the founding family remains the majority shareholder of the listed company.

About TrialSpark
TrialSpark is a technology-driven pharmaceutical company that conducts end-to-end clinical trials focused on delivering new treatments to patients faster and more efficiently. TrialSpark has built a technology platform that optimizes all aspects of a clinical trial, enabling more efficient trial design, faster trial completion, and better quality of trial data. TrialSpark licenses and co-develops drug programs through internal development, joint ventures and NewCos. TrialSpark is backed by leading investors such as Sam altman, Married Lachy, Michel moritz, Casdin Capital, Sequoia Capital, Thrive Capital, Dragoneer, Section 32, John doerr, Spark Capital, Felicis Ventures, Sound Ventures, Arrowmark and former investors.

Press inquiries
lily@trialspark.com

Related links
https://www.trialspark.com

Cision

Cision

View original content to download multimedia: https://www.prnewswire.com/news-releases/trialspark-licenses-sprifermin-an-investigational-first-in-class-disease-modifying-treatment-for-osteoarthritis-from -merck -kgaa-darmstadt-germany-and-announces-the-formation-of-high-line-bio-301456562.html

SOURCE TrialSpark

]]>
https://philippinecerebralpalsy.org/trialspark-licenses-sprifermin-an-investigational-first-class-disease-modifying-treatment-for-osteoarthritis-from-merck-kgaa-darmstadt-germany-and-announces-formation-of-high-line-bio/feed/ 0
New COVID rules for healthcare, elderly care and hospitality workers https://philippinecerebralpalsy.org/new-covid-rules-for-healthcare-elderly-care-and-hospitality-workers/ https://philippinecerebralpalsy.org/new-covid-rules-for-healthcare-elderly-care-and-hospitality-workers/#respond Mon, 10 Jan 2022 03:47:31 +0000 https://philippinecerebralpalsy.org/new-covid-rules-for-healthcare-elderly-care-and-hospitality-workers/

The Victorian government today announced a number of important changes aimed at further protecting the state’s most at-risk care, health and reception workers from the risk of COVID-19 and outbreaks. super-propagating events.

Under new pandemic orders set to take effect Wednesday, Jan. 12 at 11:59 p.m., workers in key industries that must already be fully immunized must receive their third dose before being allowed to work on site.

This will apply to health care, care for the elderly, people with disabilities, emergency services, correctional facilities, quarantine facilities and food distribution workers. Workplaces must see and record proof of vaccination.

“This is a wise extension of our existing immunization requirements – ensuring that our essential workers and the vulnerable members of the community they care for are protected,” said Health Minister Martin Foley.

“Victoria is open and the community is encouraged to support businesses in a COVIDSafe way. Closing indoor dance floors is a simple but important step – we know they pose an extraordinary risk of mass transmission.

“No setting is more vulnerable than hospitals and senior care, and that’s why hospital visitors will need to have received two doses of the COVID-19 vaccine or return a negative rapid antigen test. “

Workers eligible for a third dose on or before Wednesday January 12 will have until Saturday February 12 to receive their third life-saving dose. Workers not yet eligible for a third dose will need to obtain it within three months and two weeks of the deadline to receive their mandatory second dose.

This means that senior residential care workers should receive their third dose by March 1 and healthcare workers by March 29. People with disabilities, quarantine facilities, prisons, emergency services and food distribution workers will need to receive their third dose by March 12.

According to the changes, good distribution workers include manufacturing, warehousing and transportation (freight / port) workers involved in food distribution. Retail supermarket staff are not included in the mandate.

The Victorians of these priority cohorts were among the first to have their first and second dose of vaccination in 2021. The mandatory vaccination requirement will not apply to workers who have a valid medical exemption.

“This ordinance responds to the increased risks of exposure to COVID-19 for critical workers, their proximity to vulnerable people, the higher risk of the virus spreading in their workplace and the need to protect access to essential goods and services, ”said the Minister.

“All Victorians continue to be encouraged to receive their third dose as soon as they become eligible and we will continue to work with public health and industry experts on immunization requirements.

“As a smart move to reduce the risk of the virus spreading, indoor dance floors at hospitality and entertainment venues are to close as of 11:59 pm on January 12. The sites can still function and no changes are made to the density settings currently in place.

“This change reflects parameters already in place in other states, including New South Wales. Indoor dance floors at weddings will be permitted, but hosts and wedding guests should always consider the risks of dance floors and choose to place them outdoors if possible.

Please continue to monitor your health and get tested if you have symptoms, the minister urged.

In addition, additional restrictions on visitors will be applied to hospitals and elderly care facilities, reflecting the vulnerable nature of the patients and residents of these facilities, he said.

“Elderly care center residents will continue to be allowed to receive up to five visitors per day, but visitors must return a negative RAT result before entering. If no RAT is available at the facility, residents will not be allowed more than two visitors. “

“Visitors to hospitals must have received two doses of the vaccine or must return a negative RAT result before entering. Adult visitors who are not fully vaccinated should wear an N95 mask when visiting. Standard face masks continue to be mandatory for children 8 years of age and older.

“While the on-arrival testing requirements remain unchanged, fully vaccinated international arrivals will no longer need to undergo a second PCR or RAT five to seven days after arrival. This change is in line with the National Cabinet decision last week and recognizes the high levels of COVID-19 transmission currently in the community. “

Meanwhile, food and beverage manufacturing, distribution or packaging workers, including workers in retail supermarkets, may be exempt from close contact isolation requirements in order to attend the work from Wednesday January 12 at 11:59 p.m., if necessary for business continuity and other options have been exhausted.

“To mitigate the risks, exempt workers must be asymptomatic, undertake daily RATs for 5 days and return a negative result before going to work. They cannot enter shared break areas and employers are urged to facilitate solo breaks, ”the Minister of Health said.

“In addition, face covers should be worn, using N95 / P2 respirators if possible. Both the worker and the workplace must consent to the worker’s return.

“This new exemption from close contact isolation for asymptomatic food distribution workers is similar to provisions already in place for critical healthcare workers,” he said.

Information on the updated COVIDSafe parameters and vaccination requirements for the third dose will be posted on www.coronavirus.vic.gov.au when the bylaws come into effect at 11:59 p.m. on Wednesday, January 12.

]]>
https://philippinecerebralpalsy.org/new-covid-rules-for-healthcare-elderly-care-and-hospitality-workers/feed/ 0
New Treatment May Save Sight For Children With ‘Devastating’ Batten Disease | Health https://philippinecerebralpalsy.org/new-treatment-may-save-sight-for-children-with-devastating-batten-disease-health/ https://philippinecerebralpalsy.org/new-treatment-may-save-sight-for-children-with-devastating-batten-disease-health/#respond Sun, 09 Jan 2022 19:29:00 +0000 https://philippinecerebralpalsy.org/new-treatment-may-save-sight-for-children-with-devastating-batten-disease-health/

Eight children born with a “devastating” genetic disease in England became the first in the world to receive pioneering treatment to prevent them from going blind.

Doctors at Great Ormond Street Hospital in London are testing a drug they believe could save the sight of children with CLN2-type Batten disease. Brineura, already effective in animals, is given to four boys and four girls on a compassionate basis.

The breakthrough treatment works by restoring a “missing” enzyme that the nerves in the back of the eyes need to function. Clinicians and families hope that a body of evidence accumulating over the next year will allow the drug to be made more widely available to affected children around the world.

CLN2 disease is caused by a change in a gene responsible for the production of a vital enzyme in the nervous system. The enzyme recycles waste, and without it, waste accumulates. CLN2, which affects 50 children in the UK and hundreds around the world, causes seizures first and then a gradual decrease in their ability to walk, speak and see, as well as progressive dementia. The life expectancy is 10 to 12 years.

The Carroll family has been struck twice by CLN2: Amelia, eight, and her brother Ollie, 10, both have it. It’s too late to save Ollie’s sight, but Amelia has been selected for trial.

Their mother, Lucy, from Cheshire, said: “We have seen our son Ollie go blind, and now the same thing is starting to happen to Amelia. But we were given this chance, this hope. Saving the sight of a child would be amazing and would make such a big difference to Amelia’s quality of life.

Carroll said “any vision” saved for Amelia would be “better than nothing,” adding, “We just hope she can prove that this treatment works so that children in the future can have it in both eyes and it will save their sight. “

Lucy and Mike Carroll with Ollie and Amelia. Photography: Richard Saker / The Observer

With Ollie turning 11 in January, Carroll is aware he may not have much longer to live. “We have learned to live each day like the last,” she said. “And create as many memories as possible – just spend as much time as possible with the kids as a family.”

The drug being tested is already being used to help prevent neurological deterioration in children with Batten disease. Brineura was first approved for use on the NHS in 2019 and is given directly to the brain through a regular infusion. It has been shown to restore enzyme activity and slow the onset of disability.

But although it is effective in preventing loss of movement and speech, brain perfusion does not prevent children from losing sight because it cannot reach the nerves in the eye. In the Great Ormond Street Hospital program, clinicians use the small amount of medicine that is left in the perfusion in the brain and inject it directly into the back of children’s eyes.

The eight patients – aged 4 to 10 – were chosen by doctors to test the treatment given under general anesthesia after it was found to be safe and effective in animals. Doctors treat one eye per child every two months, and after one year they will compare the difference in vision between the two eyes.

The trial was only made possible after a huge fundraising campaign by the families of children affected by the disease and the Batten Disease Family Association (BDFA). Together they have raised over £ 200,000, in hopes the lawsuit could be life-changing for others.

A second child undergoing the new treatment is eight-year-old Londoner Kavyansh.

Eight-year-old Kavyansh, who was diagnosed with CNL2 at the age of four.
Eight-year-old Kavyansh, who was diagnosed with CNL2 at the age of four.

His father, Dr Rahul Dubey, said: “Kavy was diagnosed with CLN2 when he was only four years old and nothing could have been more devastating. The brain infusions helped stabilize Kavy, but seeing his vision deteriorate over the years and make him lose confidence was very painful.

“Like so many other families of children with this terrible disease, we knew we had to do whatever we could and worked closely with the GOSH clinical team to help get this program started. We feel extremely lucky that Kavy has a chance to keep what little sight he has left; it means everything to us.

Dr Paul Gissen, Honorary Consultant in Pediatric Metabolic Diseases at Great Ormond Street Hospital, said: “Enzyme replacement therapy given to the brain has completely changed the lives of children with CLN2-type Batten disease, but it was difficult. to see their eyesight deteriorate even as their other physical symptoms are better controlled. The multidisciplinary team at GOSH worked hard to find a way to try and treat this and this was only possible through fundraising and the tireless work of the families of the patients.

]]>
https://philippinecerebralpalsy.org/new-treatment-may-save-sight-for-children-with-devastating-batten-disease-health/feed/ 0
Where Family Care for Aging is behind https://philippinecerebralpalsy.org/where-family-care-for-aging-is-behind/ https://philippinecerebralpalsy.org/where-family-care-for-aging-is-behind/#respond Sun, 09 Jan 2022 16:08:34 +0000 https://philippinecerebralpalsy.org/where-family-care-for-aging-is-behind/


Health Sciences

In the latest installment of 360info’s three-part series on aging populations, S Irudaya Rajan and Nelgyn Tennyson look to India, where family care is no longer seen as the only solution. Read part one here and part two here.

The care of the elderly and the nature of the family unit is undergoing a seismic change in India.

Families are smaller, and many children leave for studies or careers. Finally, the children settle abroad or in another city, leaving behind their elders.

Just behind China, India is already home to a sizeable elderly population. By 2050, one in five Indians will be over 60: some 319 million people.

Who will take care of them?

Increased life expectancy, migration and declining fertility all lead to an aging population and with it an increased demand for care facilities for the elderly. Radical changes are needed to address the resulting societal and economic impact on everything from jobs to the value of assets.

Indians may live longer, but like aging populations elsewhere, they live with no more sickness and handicap. On average, 30 percent of Indian seniors live with at least one chronic illness, while 20 percent live with at least two. Cardiovascular disease, cancer, chronic respiratory disease, diabetes and vision problems are all on the rise.

Smoking, obesity, physical inactivity, mental illnesses and alcohol consumption are fueling the growing burden of disease. Deaths due to cardiovascular disease alone Cost India more in terms of years of healthy working life lost than any other country in the world.

More long-term care is needed, but there is a shortage of skilled caregivers; lack of quality control systems hinders regulation. Elder abuse is rampant, complaints and lawsuits are on the increase both at home and in formal elderly care facilities.

India’s national population Politics talks about providing care for the elderly but does not detail how to achieve it. India’s National Health Policy is committed to providing culturally appropriate community-based solutions to meet the health needs of the elderly. It also recognizes the growing need for palliative and rehabilitative care and advocates for continuity of care at all levels.

Health and wellness centers ” are emerging to provide comprehensive primary health care as well as training in palliative care, but other policies point to the need for more and better home care.

A national Politics for the elderly adopted in 2011 recognizes the need for long-term care facilities, but considers institutional care as a last resort. He promises to strengthen the family system so that the elderly remain a family responsibility. It recommends tax incentives for people looking after elderly family members at home. The policy also promised a cadre of affordable geriatric health care specialists and professional caregivers and to broaden and expand the current National Elderly Health Care Program (NPHCE), in partnership with civil society organizations.

India’s social and economic policy must keep pace with changes in its society, with a focus on long-term care.

Kerala, a state with the highest proportion of older people in its population, is leading the way. He delivered the country’s first pain and palliative care policy with a focus on community home care initiatives under the leadership of local self-government. The program operates at three levels: primary home care; secondary care in hospital; and main tertiary institutional care.

Today, the vast majority of palliative care services in India are located in Kerala. A State which has recognized that family care is no longer the only solution to the aging of the Indian population.

Originally published under Creative Commons by 360info ™.

S Irudaya Rajan is President of the International Institute for Migration and Development (IIMAD), Kerala, India. Nelgyn tennyson is a researcher at IIAMD.

The authors have declared no conflicts of interest with respect to this article.

]]>
https://philippinecerebralpalsy.org/where-family-care-for-aging-is-behind/feed/ 0
New Treatment May Save Sight in Children With ‘Devastating’ CLN2 Disease | Health https://philippinecerebralpalsy.org/new-treatment-may-save-sight-in-children-with-devastating-cln2-disease-health/ https://philippinecerebralpalsy.org/new-treatment-may-save-sight-in-children-with-devastating-cln2-disease-health/#respond Sun, 09 Jan 2022 14:18:34 +0000 https://philippinecerebralpalsy.org/new-treatment-may-save-sight-in-children-with-devastating-cln2-disease-health/

Eight children born with a “devastating” genetic disease in England became the first in the world to receive “pioneer” treatment aimed at preventing them from going blind.

Doctors at Great Ormond Street Hospital in London are testing a drug they believe could save the sight of children with CLN2-type Batten disease. Brineura, already effective in animals, is given to four boys and four girls on a compassionate basis.

The breakthrough treatment works by restoring a “missing” enzyme that the nerves in the back of the eyes need to function. Clinicians and families hope that a body of evidence accumulating over the next year will allow the drug to be made more widely available to affected children around the world.

CLN2 disease is caused by a change in a gene responsible for the production of a vital enzyme in the nervous system. The enzyme recycles waste, and without it, waste accumulates. CLN2, which affects 50 children in the UK and hundreds around the world, causes seizures first and then a gradual decrease in their ability to walk, speak and see, as well as progressive dementia. The life expectancy is 10 to 12 years.

The Carroll family has been struck twice by CLN2: Amelia, eight, and her brother Ollie, 10, both have it. It’s too late to save Ollie’s sight, but Amelia has been selected for trial.

Their mother, Lucy, from Cheshire, said: “We have seen our son Ollie go blind, and now the same thing is starting to happen to Amelia. But we were given this chance, this hope. Saving the sight of a child would be amazing and would make such a big difference to Amelia’s quality of life.

Carroll said “any vision” saved for Amelia would be “better than nothing,” adding, “We just hope she can prove that this treatment works so that children in the future can have it in both eyes and it will save their sight. “

Lucy and Mike Carroll with Ollie and Amelia. Photography: Richard Saker / The Observer

With Ollie turning 11 in January, Carroll is aware he may not have much longer to live. “We have learned to live each day like the last,” she said. “And create as many memories as possible – just spend as much time as possible with the kids as a family.”

The drug being tested is already being used to help prevent neurological deterioration in children with Batten disease. Brineura was first approved for use on the NHS in 2019 and is given directly to the brain through a regular infusion. It has been shown to restore enzyme activity and slow the onset of disability.

But although it is effective in preventing loss of movement and speech, brain perfusion does not prevent children from losing sight because it cannot reach the nerves in the eye. In the Great Ormond Street Hospital program, clinicians use the small amount of medicine that is left in the perfusion in the brain and inject it directly into the back of children’s eyes.

The eight patients – aged 4 to 10 – were chosen by doctors to test the treatment given under general anesthesia after it was found to be safe and effective in animals. Doctors treat one eye per child every two months, and after one year they will compare the difference in vision between the two eyes.

The trial was only made possible after a huge fundraising campaign by the families of children affected by the disease and the Batten Disease Family Association (BDFA). Together they have raised over £ 200,000, in hopes the lawsuit could be life-changing for others.

A second child undergoing the new treatment is eight-year-old Londoner Kavyansh.

His father, Dr Rahul Dubey, said: “Kavy was diagnosed with CLN2 when he was only four years old and nothing could have been more devastating. The brain infusions helped stabilize Kavy, but seeing his vision deteriorate over the years and make him lose confidence was very painful.

“Like so many other families of children with this terrible disease, we knew we had to do whatever we could and worked closely with the GOSH clinical team to help get this program started. We feel extremely lucky that Kavy has a chance to keep what little sight he has left; it means everything to us.

Dr Paul Gissen, Honorary Consultant in Pediatric Metabolic Diseases at Great Ormond Street Hospital, said: “Enzyme replacement therapy given to the brain has completely changed the lives of children with CLN2-type Batten disease, but it was difficult. to see their eyesight deteriorate even as their other physical symptoms are better controlled. The multidisciplinary team at GOSH worked hard to find a way to try and treat this and this was only possible through fundraising and the tireless work of the families of the patients.

]]>
https://philippinecerebralpalsy.org/new-treatment-may-save-sight-in-children-with-devastating-cln2-disease-health/feed/ 0
Chronic Pain Patients Condemn ‘Cruel’ Changes in Treatment Guidelines https://philippinecerebralpalsy.org/chronic-pain-patients-condemn-cruel-changes-in-treatment-guidelines/ https://philippinecerebralpalsy.org/chronic-pain-patients-condemn-cruel-changes-in-treatment-guidelines/#respond Sun, 09 Jan 2022 09:15:11 +0000 https://philippinecerebralpalsy.org/chronic-pain-patients-condemn-cruel-changes-in-treatment-guidelines/

A woman from Belfast said new treatment guidelines for people with chronic pain are bringing some patients to a “crisis point”.

Julie Bermond is part of a campaign calling for a change to the NICE guidelines for the treatment of chronic pain that were implemented last year.

These guidelines say that people with chronic pain should no longer receive pain relievers, other than antidepressants, as part of their treatment, and that exercise and acceptance therapy should be used instead.

Computer engineer Julie says that while exercise and other forms of therapy are important treatment methods, she believes removing pain relievers from the guidelines will leave some patients with chronic pain “without quality of life.”

Speaking to Belfast Live, Julie said: “I have suffered from chronic pain for years and without pain relief I would not be able to be the functional member of society that I am today, where I have a job and I can pay my rent and taxes without asking for disability assistance.

“There are others who are in a worse situation than me and even with pain relief can still struggle to live normal lives due to the constant pain they find themselves in.

“These new guidelines that were put in place in April of last year took away that relief for many and I have spoken to patients who are in crisis due to the complete withdrawal of their medications in recent months.

“There are people who have been using these drugs for years, many of which can be addictive, and having them withdrawn like this can cause them serious problems and they should not be placed in such a situation.”

Julie says that while she agrees with many of the new NICE guidelines, she thinks they need to rethink the approach to pain relief.

She continued, “The new guidelines offer treatments that may work for people with chronic pain, but for many patients with chronic pain, they should be used in conjunction with some form of pain relief.

“Things like acupuncture are now recommended instead, which in my experience produces no pain relief benefit.

“The loss of pain relief could lead patients to acquire it illegally or use other substances, which can only lead them down a dark path.

“Most chronic pain patients don’t want to be medicated so as not to suffer and be ‘stoned’, because we like to have the use of our healthy minds. We just want to be medicated enough to be able to function and have a life. .

“Many chronic pain patients find these new guidelines cruel and that something urgently needs to be done about them. “

Julie has campaigned alongside chronic pain patients across the UK for the past two years against new NICE guidelines and is urging people to sign a petition against them so the issue can be heard in Parliament.

Julie said: “Thanks to our campaign, we are already seeing that patients have either a drastic reduction in pain medication or that it is completely removed apart from primary chronic pain, which appears to be being used as a comprehensive response.

“Patients can wait years in horrible pain while awaiting a diagnosis and they should be given the opportunity to decide all the options available to them for their pain relief so that they can have a good quality of life. . “

Claire Swain, who started the petition, said: “Since the start of the campaign, we have spoken to chronic pain patients across the UK who are very concerned about what lies ahead.

“Some have already lost their pain relief, while others fear it will happen to them in the future.

“Many think it’s cruel to have that relief taken away because it’s the only thing that can get them through the day.

“The Faculty of Pain Medicine and other organizations have highlighted the risks these new guidelines could pose to patients and we hope we can get enough support to bring this issue to Parliament. “

When the new NICE guidelines were announced, Dr Paul Chrisp, director of the Center for Guidelines at NICE, said: “We want these guidelines to make a positive difference for people with chronic pain, their families and their caregivers.

“He emphasizes that understanding how pain affects a person’s life and those around them and knowing what is important to the person is the first step in developing an effective care and support plan that recognizes and addresses the pain. pain of a person as valid and unique. for them.”

“Pain that lasts longer than 3 months is known as chronic or persistent pain. In the UK, the prevalence of chronic pain is uncertain, but appears to be common, affecting perhaps a third to half of the population. The prevalence of primary chronic pain pain is unknown but is estimated to be between 1 and 6% in England.

“Chronic pain caused by an underlying condition (eg, osteoarthritis, rheumatoid arthritis, ulcerative colitis, endometriosis) is known as chronic secondary pain. When the cause of the pain is not clear, it is called chronic primary pain. Although the NICE guideline covers the assessment and development of a care and support plan for all types of chronic pain, it focuses on the treatment of chronic primary pain. framework of palliative care is not covered by the guideline.

“The guideline emphasizes the need for shared decision-making, putting patients at the center of their care and fostering a collaborative and supportive relationship between patients and healthcare professionals. She emphasizes the importance for healthcare professionals to understand how a person’s life affects their pain and how pain affects their lives, including their work and play, their relationships with family and friends, and the sleep.

“The guideline recommends that a care and support plan be developed based on the effects of pain on daily activities, as well as a person’s preferences, abilities and goals. It also emphasizes the importance of being honest with the person about the uncertainty of the prognosis.

The guideline makes recommendations for treatments that have been shown to be effective in the management of chronic primary pain. These include exercise programs and psychological therapies CBT and Acceptance and Commitment Therapy (ACT) Acupuncture is also recommended as an option.

“People with chronic primary pain should not start with commonly used medications, including paracetamol, nonsteroidal anti-inflammatory drugs, benzodiazepines, or opioids. Indeed, there is little or no evidence that they alter people’s quality of life, pain, or psychological distress, but they can cause harm, including possible addiction.

“The guideline recommends that an antidepressant may be considered in people 18 years of age and older to manage chronic primary pain, after a full discussion of the pros and cons. Indeed, evidence shows that antidepressants can improve quality of life, pain, sleep, and psychological distress, even without a diagnosis of depression.

Dr Chrisp added: “This guideline is very clear in pointing out that, based on the evidence, for most people, drug treatments for chronic primary pain, other than antidepressants, are unlikely to provide an adequate balance of the benefits that are needed. ‘they could bring and the risks associated with them.

“But people shouldn’t worry that we are just asking them to stop taking their medication without giving them alternative, safer and more effective options. First, people taking medications to treat their chronic primary pain that are not recommended in the guideline should ask their doctor to review their prescription as part of shared decision making. This could involve agreeing on a plan to continue taking their drugs if they provide benefit at a safe dose and little harm, or support for them to reduce and stop the drug if possible. When making shared decisions about whether to quit, it is important that all issues associated with quitting are discussed and properly addressed.

If you would like to sign the campaign petition, please follow this link.

]]> https://philippinecerebralpalsy.org/chronic-pain-patients-condemn-cruel-changes-in-treatment-guidelines/feed/ 0 How to claim up to $ 16,000 in tax credit for childcare expenses in 2021 https://philippinecerebralpalsy.org/how-to-claim-up-to-16000-in-tax-credit-for-childcare-expenses-in-2021/ https://philippinecerebralpalsy.org/how-to-claim-up-to-16000-in-tax-credit-for-childcare-expenses-in-2021/#respond Sun, 09 Jan 2022 00:00:02 +0000 https://philippinecerebralpalsy.org/how-to-claim-up-to-16000-in-tax-credit-for-childcare-expenses-in-2021/

Child care can be a significant expense. The expanded child care credit for 2021 can reimburse you for 50%.

Sarah Tew / CNET

A new year means a new tax season ahead – and there are big changes in the child care and dependent care credit this could result in a significant increase in your tax refund. The child care and dependent care credit allows you to deduct child care or dependent care expenses as a direct reduction of the amount of federal tax you owe. The credit applies to expenses for child care, child care or transportation related to the care of children or dependents.

Thanks to a single credit extension in the American Rescue Plan Act, parents who paid for child care in 2021 are eligible to receive up to 50% of their child care expenses in the form of tax relief or reimbursement. The amount of the tax credit that you can claim is $ 8,000 for one dependent and $ 16,000 for two or more people. The trap ? You will need all of your receipts and other monetary evidence to make sure you can claim the tax break when you file your tax return.

We will explain how this tax credit for child care works below. This story was recently updated.

What is the child care and dependent care credit?

The Child Care and Dependents Credit is a tax relief designed to allow parents to deduct child care expenses. For example, if you paid for child care while you were working, that expense may be claimed as a credit when you file your taxes this year.

How is the child care credit different from 2021 taxes? In previous years, the maximum amount you could claim was $ 3,000 for one child or $ 6,000 for two or more. For 2021 expenses, you can claim up to $ 8,000 for one child or dependent and up to $ 16,000 for multiple children. The one-time child care credit increase for 2021 also increases the maximum rate of return for child care expenses from 35% to 50%.

What does it mean? In short, for the 2021 tax year, you could recover up to $ 4,000 for one child and $ 8,000 for custody of two or more.

Prior to the American Rescue Plan, the Child and Dependent Credit was non-refundable, meaning it could reduce your tax bill to zero but you wouldn’t receive a refund on anything more. . Now, the credit is fully refundable, which means that you will receive money for it even if you don’t owe taxes.


Now playing:
Check this out:

Child tax credit: everything we know


4:17

What counts as an eligible expense for the child care credit?

The law defines the expenses according to the care of the children suppliers, but there is room for maneuver that also takes into account expenses such as transport. Any organization or person who cares for your dependent counts as long as you pay them. (For example, an unpaid spouse or parent does not count.)

The IRS has relatively relaxed rules about caregivers, according to Elaine Maag, senior research associate at the Urban Institute. However, you are likely to be more likely to claim child care credits for people and groups operating in an official capacity, such as preschools and daycares, as opposed to the $ 40 you paid a teenager for. babysit your child for an afternoon.

Qualified care providers

What qualifies

What is not admissible

Care expenses

Your partner

Before and after school care programs

The dependent’s parent

Day camp

Your children

Transport to and from healthcare providers

Babysitters paid “under the table” *

Babysitters, nannies, housekeepers

* Parents who pay their babysitters in cash “in the dark” should be aware that it is risky to claim the child care tax credit since the income may not be claimed or documented by the provider.

How do I deduct child care expenses from my taxes?

Make sure you have a detailed account of all child care expenses – especially any receipts you received from daycares or after-school programs showing your expenses. When tax day approaches, fill out Form 2441 and tie it to your Form 1040 tax return.

According to the IRS, you will need to report the name, address and “Taxpayer Identification Number” or TIN (this can be a Social Security number or Employer Identification Number) provider on your declaration. You can use Form W-10 to get the information you need from your healthcare provider.

Note that the Child Care and Dependents Credit Form is built into tax software such as TurboTax and H&R Block. These programs will ask you if you have a child under 13 and paid child care expenses during the year in order to calculate your child care credit.

001-cash-stimulus-child-tax-credit-3600-calculator-cnet-2021-2020-federal-government-money-baby-family-pacifier-sippy

You will need itemized expense statements and receipts to apply for the child care credit.

Sarah Tew / CNET

What is the maximum amount I can claim for child care expenses?

For expenses accrued in 2021, the IRS says you can deduct up to $ 8,000 of eligible expenses for one dependent or up to $ 16,000 of eligible expenses for multiple dependents.

Remember that the child and dependents tax credit is not the same as the child tax credit of the same name. Advance child tax credit payments were paid on a monthly basis last year. If you are eligible for the child tax credit and have not received advance payments, you can receive between $ 500 and $ 3,600 per child as a credit when you file your income tax return.

Does my income affect the amount I can claim or recover?

To be eligible for the child care credit, a filer must have earned income, such as wages from employment or unemployment. If you are married and file a joint income tax return, your spouse must also have earned income. (Exemptions apply full-time students and people receiving disability benefits.) The IRS says that in general, you can not take child care credit if you are married and file separately.

The maximum amount of eligible child care expenses – $ 8,000 for one child or $ 16,000 for two or more – is not affected by income level. However, the rate of return on the child care credit declines as income increases.

For the 2021 tax year, the credit rate begins to decrease when the income of a taxpayer or an AGI household (adjusted gross income) reaches $ 125,000. The credit rate is reduced by 1% for every $ 2,000 earned over $ 125,000, up to $ 183,000, where it stands at 20% for anyone earning between $ 183,001 and $ 400,000. For example, an AGI of $ 145,000 would benefit from a 40% tax credit rate.

For those who earn over $ 400,000. the credit rate decreases again by 1% for each $ 2,000 earned over $ 400,000, and becomes zero for families of $ 438,000 or more. For example, an AGI of $ 410,000 would benefit from a tax credit rate of 15%.

Which dependents are eligible for the child care credit?

According to the IRS, the eligibility rules for dependents are quite broad, but a dependent must meet one of the following criteria:

  • Be under the age of 13, or
  • Being unable to care for themselves if you are 13 years of age or older (for example, if you have an older spouse or dependent who is disabled and unable to care for themselves, and who has lived with you for more than half of the year, or
  • Being physically or mentally unable to take care of yourself, even if your income was $ 4,300 or more.

In addition, the eligible dependent must have a tax identification number, such as a Social Security number.

What should I know if I am separated or divorced?

Only the custodial parent can claim the child care credit on their taxes. The IRS defines a custodial parent as the parent with whom the child lived the most nights in 2021. The rules for separated or divorced parents are similar to those for child and shared custody tax credit.

]]>
https://philippinecerebralpalsy.org/how-to-claim-up-to-16000-in-tax-credit-for-childcare-expenses-in-2021/feed/ 0
Frankincense treatment for multiple sclerosis? https://philippinecerebralpalsy.org/frankincense-treatment-for-multiple-sclerosis/ https://philippinecerebralpalsy.org/frankincense-treatment-for-multiple-sclerosis/#respond Sat, 08 Jan 2022 20:16:45 +0000 https://philippinecerebralpalsy.org/frankincense-treatment-for-multiple-sclerosis/

primary

  • 1 million people suffer from MS in Europe
  • Globally, this disease affects 2.8 million patients.

110,000 people suffer from multiple sclerosis in France, according to National Institute of Health and Medical Research (Inserm). It is the leading cause of severe non-traumatic disability in young adults.

Currently, there is no cure for this disease. The only proposals are aimed at resting patients and improving their quality of life. But according to a new study conducted in Germany and published in British medical journal (BMJ), researchers may have discovered one. A strange fact: it’s incense!

Boswellic acid and 5-lipoxygenase

Initially, preliminary work carried out in the 1990s showed the presence of large amounts of an enzyme, 5-lipoxygenase, in the brains of patients with multiple sclerosis.5-Lipoxygenase is one of a class of fats that acts as an inflammation messenger in the body. But what does incense have to do with it? The link is boswellic acid in the resin used to make frankincense, which specifically inhibits the action of 5-lipoxygenase which, if given to a patient, can reduce the inflammation of their disease.

We assume that boswellic acids are the bioactive principles of frankincense, which has been used for thousands of years as an anti-inflammatory in oriental and traditional oriental medicine.The researchers say. Several small randomized clinical trials have demonstrated favorable safety and tolerability profiles of frankincense extracts in a number of inflammatory and autoimmune diseases.“.

Incense in the form of capsules

To verify that boswellic acid could be effective in treating multiple sclerosis, scientists conducted a clinical trial on 28 volunteers with the disease. For eight months, they took four frankincense capsules three times a day, in the form of ethanol extract. The results are convincing: “lInflammation levels in patients treated with frankincense extracts were significantly lower, at 63% of all patients, and some had no inflammation in the body at all.», Explains Klarissa Hanja Stürner. Among the beneficial effects of this treatment, some patients had fewer relapses during the months they took the capsules. Relapse can be defined as a period when the symptoms of multiple sclerosis worsen or new symptoms appear.

Scientists plan to conduct new clinical trials to better understand the mechanisms of boswellic acid and develop a new treatment for multiple sclerosis.

]]>
https://philippinecerebralpalsy.org/frankincense-treatment-for-multiple-sclerosis/feed/ 0