Nonprofit highlights of the week – Long Island Business News

Percussionist Napoleon Revels-Bey kept toes tapping throughout the evening with a lively mix of music and storytelling that celebrated Black history with the Alzheimer’s Association’s virtual Memory Café event on Feb. 4. Memory Cafés are specially designed for people with Alzheimer’s or other cognitive issues, and their caregivers, and often feature music, which can be therapeutic for people at all stages of the disease.

After recovering from COVID-19, Laura Skelly donated convalescent plasma at Long Island Community Hospital’s recent blood drive hosted by the Hagerman Fire Department. Convalescent plasma contains COVID-19 antibodies and helps treat patients with serious COVID-19 infections.

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Southern Alberta family offering rainbow of hope with non-profit for cancer patients – Lethbridge

Karlee Durfey, a University of Lethbridge kinesiology student and Pronghorns’ rugby player, says her family’s world was turned upside down last December when her two-year-old niece, Bo Smith, was diagnosed with Stage 4 sarcoma, a rare form of cancer which had spread to her lungs and liver.

“It was super tough,” Durfey explained.

“Bo wasn’t feeling well. She had a spot on her stomach… she would kind of complain when we picked her up that it would hurt, and so she went through a bunch of emergency visits.”

Bo then fought her cancer battle at the Alberta Children’s Hospital.

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A GoFundMe page was created by Durfey, and support rolled in from friends and family to help Bo’s family pay for trips to Calgary and hotel stays as they lost work hours.

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“They did have a room at the Ronald McDonald House, and sometimes she’d stay at the hospital,” Durfey said. “But once COVID(-19) hit, it was even harder because sometimes they couldn’t offer her a stay at the hospital or they couldn’t go to the Ronald McDonald House unless they wanted to stay for a long time, which wasn’t quite possible with my sister having two other kids to tend to at home.

“So that made it even harder.”

During her fight, Bo lost a kidney. But one year later, she’s a healthy three-year-old and her cancer is in remission after undergoing radiation and chemotherapy treatments.

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“We spent quite a few days at the hospital and honestly, it gets boring, so we were looking for things to do,” Durfey said.

“So my mom took us to a sewing store, and we started embroidering. The first thing I ever embroidered was a rainbow — Bo loves rainbows, they kind of signify the light after the rain, after a hard thing.”

When the stormy clouds in their lives started to part, Durfey said her sister, Bo’s mom, had an idea.

“I was still embroidering, and she said we should embroider clothes and sell them — not necessarily to make a profit, but to give to families that needed help when their kids are sick, just like the support our family got,” Durfey said.

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“She spent a lot of time in the hospital and saw a lot of families and a lot of kids going through the same thing who could really use some help.”

In their quest to pay it forward, the sisters created a non-profit called Bo Smith & Co. in May.

“We started embroidering,” Durfey said. “We didn’t really want to sell clothes to make money, so we thought we could give it back in a way we thought was important — so that’s what we did.

“(We) can’t quite keep up with the demand in sales, so it’s been awesome.”

Durfey said 100 per cent of profits from the embroidered clothing goes towards families with children battling cancer.

The family has already raised over $20,000 through the non-profit and has financially assisted 12 families with a child fighting cancer. They’ve also donated to a couple of different fundraisers all in support of childhood cancer.

Bo has been serving as the organization’s star model.

© 2020 Global News, a division of Corus Entertainment Inc.

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A look at Facebook ad strategies used in Trump's 2016 campaign, as taught by ex-Facebook staffer James Barnes, now campaigning for Biden with non-profit Acronym (Arielle Pardes/Wired)

Arielle Pardes / Wired:

A look at Facebook ad strategies used in Trump’s 2016 campaign, as taught by ex-Facebook staffer James Barnes, now campaigning for Biden with non-profit Acronym  —  The platform was key to the president’s upset victory in 2016.  Can a group of former employees use it to boost Joe Biden?

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A nonprofit just announced a 23andMe-like genomic sequencing model for a rare cancer—but it’s free

Subscribe to The Capsule, a daily brief monitoring advances in health care and biopharma, delivered free to your inbox.

The Multiple Myeloma Research Foundation (MMRF) is launching a new effort to provide cancer patients with personalized recommendations for dealing with their disease. The project, called CureCloud, resembles the model used by 23andMe and similar genomic sequencing companies, but it would be provided for free, the organization tells Fortune.

MMRF founder Kathy Giusti was diagnosed with multiple myeloma in 1996. In the nearly 25 years since, she’s dedicated her life to helping patients with the rare blood cancer, which can weaken bones and the immune system at large. Giusti spent years as a pharmaceutical executive at companies like G.D. Searle and Merck. The combination of experiences has informed her strategy for spurring treatments for the rare cancer, which afflicts about 33,000 Americans per year, according to the American Cancer Society (ACS).

The new CureCloud project amounts to a “crescendo of disruption” when it comes to multiple myeloma treatment, Giusti tells Fortune. After a blood draw at home by a doctor, the patient will receive a personalized report with advice on how to deal with their disease via the advent of genomic sequencing.

“With our support, anyone can now get sequenced,” says Giusti. “It doesn’t matter what your economic status is, we will sequence you if you raise your hand.”

The process was developed with the help of the Broad Institute and other partners, focused on created a blood draw to make the genomic sequencing simple. The general approach speaks to Giusti’s longstanding belief that breaking down research silos, especially by expanding access and slashing costs, is critical to developing new cancer drugs.

“Patients get their own report sent back to them, and their clinician gets information as well,” she says. “So imagine the conversations the patients can have with their clinicians at that point.”

The CureCloud initiative required some $30 million to $40 million to fund and seeks to sequence the genome of 5,000 myeloma patients across the country. Those patients can participate in research programs meant to help discover new treatment options for different types of myeloma while also gaining access to a personalized dashboard that tells them how other volunteers with a similar form of cancer are faring and what works best for them.

Since the MMRF’s formation, a dozen drugs for multiple myeloma have been approved, largely with the help of the organization’s shared and public data bank, and, according to Giusti, “we tripled the lifespans of our patients.”

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Muslim Nonprofit Distributes Food to Melbourne Public Housing Residents in COVID-19 Quarantine

Muslim Nonprofit Distributes Food to Melbourne Public Housing Residents in COVID-19 Quarantine

A nonprofit organization distributed donated groceries to residents of public housing towers in North Melbourne that are under “hard lockdown” on Monday, July 6. The residents are not allowed to leave their homes, according to reports. A block of towers in North Melbourne was placed on total lockdown by the Victorian government after a spike in coronavirus cases in an effort to curb any potential spread. Resident Hava Buday shared video on her Instagram story showing members of Australian Muslim Social Services Agency (AMSSA) Youth Connect pushing carts full of groceries door to door in her tower. The group shared a video of a trove of donated goods on its Facebook page and said that donations would not be accepted on Wednesday because the donation center had reached its capacity. Credit: Hava Buday via Storyful

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R.I. teen creates non-profit org. to provide smart tech to patients isolated from loved ones

In this Monday, May 4, 2020, photo, Kaya Suner holds up an iPhone and an iPad as he poses for a portrait in Northfield, N.H. (AP Photo/Charles Krupa)

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UPDATED 4:45 PM PT — Friday, May 8, 2020

A Rhode Island teen is working to bring isolated coronavirus patients together with their friends and families, while keeping a safe distance.

“There’s a ban on visitation in the hospitals right now,” he explained. “Patients, you know, don’t have the abilities to connect with their loved ones, so that’s kind of where we step in.”

19-year-old Kaya Suner began his mission to provide technology to hospital patients under quarantine with a Facebook idea. His non-profit allows individuals to donate their “gently used” smart phones or tablets with functioning cameras.

As more people stepped up to contribute, the idea evolved into a non-profit organization called COVID Connectors. The group quickly met its goal of collecting 650 devices for Rhode Island hospitals.

“So I just posted on Facebook and said, ‘Hey, if anybody has any devices, let me know and I can work up my parents to get them into hospitals,’” stated Suner. “The response was pretty overwhelming just on Facebook alone.”

COVID-19 patients are reportedly using the devices to keep in touch with family and loved ones, who have joined in to celebrate birthdays or meet newborns for the very first time.

In one case, Suner said the technology helped a patient receive their last rites before succumbing to the virus.

“One family member said that they had someone in the hospital who wanted their last rites read,” he said. “We were able to get an iPad to them and they had their last rites read to them.”

As it stands, COVID Connectors operates throughout Massachusetts and New Hampshire. Suner is planning to bring the group’s services to New York in the coming weeks.

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