Canada Family of boy with rare disease asking Ottawa to fund research into condition

02:00  01 october  2020
02:00  01 october  2020 Source:   msn.com

Inside the 'Mess' of TikTok's Oracle Deal: 3 Things to Watch

  Inside the 'Mess' of TikTok's Oracle Deal: 3 Things to Watch Signing a multibillion-dollar deal is never easy — and that's especially the case with Oracle's proposed bid to take over TikTok's U.S. operations. The bid appeared to be nearing the finish line this past weekend, only to hit more roadblocks on Monday. "This whole process has been a mess," Martin Chorzempa, a research fellow at the Peterson Institute for International Economics, told the Associated Press — and that was a week ago, before the latest ups and downs. Lingering questions remain about the framework of the deal, as well as reservations the Trump administration has over data security concerns, leading to more questions than answers.

An eastern Ontario man diagnosed with a rare autoimmune disease wants the drug that worked on him in hospital to A manufacturer of the drug has agreed to fund his treatment for one year. Ellis went to the manufacturer of rituximab to ask for funding on humanitarian grounds, and it agreed to pay for

Family of teenager with rare condition causing his kidneys to become blocked and fail make desperate plea to NHS for 'life-saving' drug. Now, the family are writing to health secretary Jeremy Hunt to raise awareness to Matty's case in the hope the NHS will fund the drug before it is too late.

a man smiling for the camera © Provided by The Canadian Press

The father of a young Ontario boy with a rare genetic disease is asking the federal government to help fund research that could treat his child's condition, saying the support is particularly needed since the COVID-19 pandemic has made it tough to raise donations.

Terry Pirovolakis said his two-year-old son Michael was diagnosed last year with SPG50, an extremely rare disorder that causes a loss of mobility and a decline in brain functions over time.

Kelly Clarkson Shows Off Killer Vocals With Delivery Of Lizzo’s ‘Good As Hell’

  Kelly Clarkson Shows Off Killer Vocals With Delivery Of Lizzo’s ‘Good As Hell’ A new season of “The Kelly Clarkson Show” means more incredible Kellyoke performances. Clarkson’s latest cover was Lizzo’s “Good As Hell”, with the singer putting her own spin on the much-loved track as she belted out the feel-good lyrics. This week’s season 2 premiere saw Clarkson sing some classic TV theme songs, including the openings to “Full House”, “Cheers” and “Golden Girls”. RELATED: Kelly Clarkson Shares The Surprising Songs That Have Been The Soundtrack To Her Divorce Kicking off the segment, Clarkson was looking for an escape from all that’s happening in the world right now.

Many rare diseases , including infections, some rare cancers, and some autoimmune diseases , are not inherited. Many of the 27 Institutes and Centers at the NIH fund medical research for rare diseases . One of these Centers, the National Center for Advancing Translational Sciences (NCATS), focuses on

The cost of care for rare medical conditions can place a significant financial burden on families . See our guides on How to Get Involved in Research and Help with Travel Costs for more information about participating in clinical trials and finding financial assistance with the cost of travel.

His family has been raising money for research that could help develop treatment for Michael but the pandemic has meant many planned fundraising events had to be cancelled, he said.

"It's been very difficult because we had to stop all of our fundraising campaigns," Pirovolakis said. "We're all in the same situation where our lives are turned upside down but ours is a bit more complex, where we're trying to build a cure."

The family noticed Michael was not meeting his milestones as a baby, Pirovolakis said. After many tests and doctors appointments, the young boy was diagnosed with the disease that could lead to developmental delays and confine him to a wheelchair by the age of 10, the family said.

Determined to help their son, the Pirovolakis family has been trying to raise money to get the child into experimental treatment.

Alanis Morissette Is A ‘Huge Fan Of’ Tegan And Sara, ‘Obsessed With Janet Jackson’

  Alanis Morissette Is A ‘Huge Fan Of’ Tegan And Sara, ‘Obsessed With Janet Jackson’ Alanis Morissette is raving about her fellow women in the music industry. Morissette, 46, shared her eclectic playlist with fans on Alanis Radio. During the program, Morissette expressed her appreciation for fellow Canadian singers Tegan and Sara. RELATED: Alanis Morissette Talks Attachment Parenting “I am huge fans of [Tegan and Sara] on a lot of levels," the Jagged Little Pill singer said. "Musically and activismly, just big hearts, big brains, big passion and power, and I love them. I especially love ‘Closer’ from their album Heartthrob." Morissette also gushed over Janet Jackson.

E. A research showed that those young people who have a mobile feel more independent and often use it to plan meetings both relatives and peers. I have learned the benefit of research and reading, of debate and listening. One day soon a group of fresh-faced college students will call me professor.

Researchers expand submenu for Researchers . Finding Funding Opportunities. GARD maintains a list of rare diseases and related terms to help people find reliable information. The prevalence of a rare disease usually is an estimate and may change over time.

The family had put on events that included a golf tournament, a gala and a Christmas market to fundraise last year, but can now only rely largely on online campaigns such as their GoFundMe page while COVID-19 restrictions are still in place, Pirovolakis said.

In an effort to keep raising funds and awareness for their son's condition, Pirovolakis said he planned to bike from Pickering, Ont., to Ottawa – starting on Saturday – and has asked to meet with the Prime Minister Justin Trudeau next week.

"We're seeing if there's any way that we can get some sort of funding from the federal government," he said.

"Hopefully, we'll meet Mr. Trudeau and bring awareness and bring funding and support not just for my son, but for the other children affected by this disease."

The family has raised almost $1.6 million so far but is hoping to raise $3 million. Pirovolakis said research on SPG50 is being conducted in several hospitals outside Canada and involves gene therapy.

The prime minister's office did not immediately respond to a request for comment.

This report by The Canadian Press was first published on Sept. 30, 2020.

This story was produced with the financial assistance of the Facebook and Canadian Press News Fellowship.

Denise Paglinawan , The Canadian Press

Corona crisis: Norway wants to withdraw a record amount from the oil fund .
Norway must also help its battered economy with aid packages out of the crisis. Around 40 billion euros from the state fund are now to fill the budget holes. © dpa The Norwegian oil fund is supposed to ensure prosperity even after the oil wells have dried up. The economic effects of the corona pandemic do not stop at Norway , one of the richest countries in Europe.

—   Share news in the SOC. Networks
usr: 3
This is interesting!