Philanthropy

All Articles in the Category ‘Philanthropy’

New Collaboration Could Accelerate Cures for Lupus, Other Childhood Diseases

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Kathia Vega Flores, 18, was diagnosed with lupus when she was 11 years old. She has had to take toxic medications to manage her disease.

Kathia Vega Flores will never forget the way her friends and family reacted when she came home from a month-long hospital stay at age 11: They did not recognize her.

Kathia had been diagnosed with lupus, a lifelong disease that causes inflammation throughout the body. The medications used to control her disease caused Kathia’s body to swell. She couldn’t walk without assistance. She was often dizzy and nauseous.  In total, Kathia was taking 20 pills each day.

“The medications changed me a lot,” she said. “It was very hard. I just wanted to get back to my normal routine of going to school and seeing my family without upsetting them.”

Lupus is most commonly diagnosed in teenage girls, but half of a million people in the United States are living with it. The disease can lead to rashes, fevers, enlarged lymph nodes, psychoses, seizures and inflammation of the heart, lungs or brain.

Roadblocks on the road to cures

Dr. Anne Stevens, a research expert at Seattle Children’s Research Institute, has been treating lupus patients at Seattle Children’s for 25 years. Despite the great advances experts like her have made studying the immune system, lupus is still treated with toxic medications like chemotherapy and steroids because of a lack of funding for pediatric research. Read full post »

Alyssa Burnett Center offers life-changing opportunity for my daughter

Lynn & CarrieLast year at my son’s high school graduation, I was overcome by a flood of emotion. Not surprising you might say; all moms get choked up when they see their young adult in cap and gown, on the verge of an important life transition. I started thinking back to when Justin was just a preschooler, and then something caught my eye.

A handful of students were sitting closer to the stage, supervised by teachers. While I didn’t know them by name, I knew them. These were some of the students in the special education classroom that I had just visited a few weeks prior, the classroom where Justin’s younger sister, Carrie, would soon be enrolled..

As Justin was starting preschool 14 years ago, Carrie was diagnosed with severe autism. Her preschool years were filled with numerous therapies and interventions all aimed at helping her to be more able. During those early years, I sought out moms whose kids were a bit older, figuring they’d be a few steps ahead of us in navigating this new world of special needs. Read full post »

Milton meets the team that saved his life

Milton Wright III meets the lab technicians who engineered his T-cells and helped save his life.

Milton Wright III meets the lab technicians who engineered his T-cells and helped save his life.

Some moments are so significant the weight of them seems to hang in the air. I experienced this first-hand when cancer survivor Milton Wright III met the people who helped save his young life.

You may remember Wright, the leukemia patient who achieved remission thanks to an immunotherapy protocol designed by Mike Jensen, MD, at Seattle Children’s Research Institute.

Wright is doing well and recently had a chance to meet the scientist who designed his therapy, the technicians who modified his cells and the family whose foundation helped fund his treatment. Read full post »

New law highlights need for pediatric research funding

gabbi“Stop talking and start doing.”

The 10-year-old Virginia girl who spoke these words to lawmakers helped increase funding for pediatric research this year with the passing of a new law, and Seattle Children’s Research Institute is celebrating the news.

“Pediatrics gets a very small share of the National Institutes of Health budget, certainly not proportional to the number of children in the United States,” says Jim Hendricks, PhD, president of Seattle Children’s Research Institute. “Any dollars that make their way to pediatric research may help our patients and other children around the world.”

A little girl makes a difference

Fifth grader Gabriella Miller became a widely celebrated childhood cancer activist during her 11 month battle with brain cancer. In the weeks before her death on Oct. 26, she urged lawmakers to increase support of pediatric research.

“We need action,” she said during an interview for a cancer awareness documentary. Read full post »

Seattle Children’s creates Youth Concussion Research Program

concussionphotoSeattle Children’s clinicians do everything they can to accurately diagnose concussions and recommend the most appropriate treatment. But those tasks are difficult without definitive diagnostic tools to determine when concussions have occurred or objective evidence to prove which treatments are best.

To provide better care, physicians need better research. That is why Seattle Children’s Research Institute has created the Youth Concussion Research Program.

The new program, made possible by a generous $5 million gift from The Satterberg Foundation, is designed to develop new concussion diagnostic tools; measure sports impacts using real-time sensors; and begin clinical trials to determine which concussion treatments are most effective.

“There are so many people who want to know how to prevent concussions and long-term effects,” said Frederick Rivara, MD, MPH, who will lead the Youth Concussion Research Program. “I hope we will soon be able to answer a lot of their questions.” Read full post »

From hopeless to cancer free

AmainLast fall, 20-year-old Milton Wright III was given a death sentence. Today, he is expected to live a long, healthy life. This is the incredible story of how two determined researchers and the parents of a young boy came together to save him.

On Sept. 18, 2013, 20-year-old Milton Wright III walked into Seattle Children’s Hospital and received some devastating news.

Leukemia. Again. The third time in his young life, to be precise.

Wright wasn’t surprised by the diagnosis. He had been worried his cancer was back and went to the hospital alone to avoid worrying his mom and three younger siblings. Still, the news was paralyzing.

“I really felt like I was coming up in the world,” he said. “I thought I was done with cancer.”

Then the news got worse. Wright’s leukemia had become resistant to chemotherapy. A bone marrow transplant could cure his cancer, but he would have to be in remission first, and that couldn’t happen without chemotherapy. His chances of survival were dismal. Read full post »

Ruth Benfield and Dr. Ed Marcuse begin their retirement by honoring the Journey Program

Dr. Ed Marcuse, left, and Ruth Benfield, right

Dr. Ed Marcuse, left, and Ruth Benfield, right

Let’s go back…way back, to 1977. The first Star Wars film was released and a gallon of gas cost 65 cents.

That was the year Ed Marcuse, MD, MPH, a young physician who came to Seattle Children’s in 1973, joined the search committee to find a new nursing director for outpatient clinics. Marcuse and the team hired someone with pediatric expertise, leadership potential and passion for Seattle Children’s mission: Ruth Benfield.

Now 37 years later, Benfield, who had become the vice president of Psycho-Social Services, retired on Feb. 3 and Marcuse, medical director for Quality Improvement, will retire one month later.

With their combined 78 years of service, Benfield and Marcuse have left a lasting impression at Seattle Children’s.

But rather than make their retirements a celebration of their careers, they’ve decided to use the occasion to garner support for something they both hold near and dear to their hearts – the Journey Program, a program that helps families cope after losing a child.

Read full post »

Community shows Seahawks pride and supports Seattle Children’s

It’s Seahawks mania all around the city of Seattle and for good reason – they are going to the big game this Sunday! The Seahawks have long been friends of Seattle Children’s Hospital, visiting our patients annually around the holidays during their Captain’s Blitz. This year, our incredible relationship with quarterback Russell Wilson has also helped to grow our relationship with the Hawks and allowed for Seattle Children’s to benefit from many initiatives around the city due to the success of the team.

Here’s a quick recap of what’s happening this week in support of Seattle Children’s, and how the hospital and our community is showing Hawks pride.
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Patients say good luck to Russell Wilson and the Seahawks

Quick FamilyEvery Tuesday, Russell Wilson, the Seahawk’s star quarterback, stops by Seattle Children’s Hospital to lift the spirits of patients and families. In honor of Wilson’s weekly visits, Seattle Children’s made every Tuesday Blue Tuesday at the hospital. It’s the brightest and bluest day of the week at Seattle Children’s.

Today, as Wilson and the Seahawks prepare for Sunday’s big game, patients and families at Seattle Children’s wanted to continue the Blue Tuesday tradition with a few words of encouragement. Wilson has been such an inspiration to patients and families at Seattle Children’s, they wanted to give a little inspiration of their own in return. From some of Seattle’s loudest and proudest fans, “Go Hawks!” Read full post »

Seahawks-49ers rivalry leads to something greater

UPDATE: The competition continues

Seahawks fever is still in the air!  As of Jan. 24, Seahawks fans have raised more than $257,000 for UCSF Benioff. And 49ers fans have raised more than $157,000 for Seattle Children’s. Thank you 49ers fans and Seattle’s 12th man for supporting our patients and families. With the support of the community, everyone wins. 

See the events leading up to this competitive, philanthropic milestone below:

  • In December, an anonymous Bay Area donor offered two matches of $100,000 toward both fundraising challenges.
  • On Jan. 14, the San Francisco 49ers organization pledged to match up to $100,000 to benefit both hospitals.
  • At 4 p.m. on Jan. 14, the Seattle Seahawks pledged to match up to $112,000 to benefit both hospitals.

What began as a rivalry and a billboard has led to something much bigger and more meaningful to Seattle Seahawks and San Francisco 49ers fans. The two groups have been ‘competing’ to see who can raise the most money for Seattle Children’s Hospital and UCSF Benioff Children’s Hospital in San Francisco. So far, their efforts have resulted in pledges totaling more than $100,000.

“It’s really incredible,” said Seahawks fan Christopher Hart, who spearheaded the effort to raise money for UCSF Benioff Children’s Hospital in San Francisco. “It feels good.”

It all started when a group of 49ers fans, led by project manager Aasheesh Shravah, raised enough money to purchase a tongue-in-cheek billboard in the Seattle area. The group needed $7,000 for the billboard; any extra donations they pledged to a Seattle-based charity. 49ers fans overwhelmingly chose Seattle Children’s Hospital Foundation as their charity of choice.

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