Tag Archive for: charlotte pediatric cancer

Isabella Santos Foundation Sees Significant Results in 2018

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CHARLOTTE, N.C. – Jan. 22, 2019 – This past year, the Isabella Santos Foundation (ISF) continued to make great strides in the local and national pediatric cancer community.

The most significant development was the creation of a leading-edge rare pediatric cancer treatment room at Atrium Health’s Levine Children’s Hospital. This is one of the leading MIBG Therapy Suites in the nation and is slated to change the landscape of local cancer care. ISF completed its $1 million commitment to build the treatment room which will be used to treat children with neuroblastoma and in advanced clinical trials to test new products on different types of cancers. Construction began mid-2018 and was completed in eight months. The first patient was successfully treated there in December. More information is available at http://bit.ly/MIBGTherapy.

Among the $672,000 that the Isabella Santos Foundation donated to their mission of fighting pediatric cancer, $600,000 was given to Atrium Health’s Levine Children’s Hospital and $30,000 went to The Genomics Department at Nationwide Children’s Hospital to help fund the Neuroblastoma Killer Cell Trial. Additional funds were supplied to local Charlotte organizations that support kids and families fighting pediatric cancer.

Another significant mark ISF made, was partnering with Community Blood Center of the Carolinas to open CBCC’s first blood center in South Charlotte. Named in Isabella’s honor, the Isabella Santos Center is a state-of-the art blood center located in Ballantyne.

In addition, Erin Santos, executive director of and president of ISF, was named the Housing Opportunity Foundation’s “2018 Humanitarian of the Year” and was recognized among The Charlotte Observer’s editorial board among those who “made Charlotte better in 2018.”

This year, ISF is committed to raising $5 million to fund the ISF Rare and Solid Tumor Program at Levine Children’s Hospital. This breakthrough program is designed to research and treat a wide range of deadly pediatric cancers, and will allow the hospital to expand their clinical trials and recruit a national expert in rare and solid tumors.

“We are extremely proud of our results and the impact we made on the pediatric cancer community in 2018,” said Santos. “We are very grateful for our tremendous base of volunteers, supporters, partners and staff for helping us achieve these incredible accomplishments and improve the lives of countless childhood cancer patients.”

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for rare pediatric cancers, and charities that directly impact the lives of children with cancer. ISF was founded in honor of Isabella Santos from Charlotte, N.C. who lost her battle against neuroblastoma. ISF is committed to improving rare pediatric cancer treatment options in an effort to increase the survival rate of kids with cancer so they can live their dreams. ISF has donated over $3 million to date to expand the scope of pediatric cancer research and treatment, and to fill various needs surrounding childhood cancers.

For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation), Twitter (www.twitter.com/TheISFoundation) and LinkedIn (https://www.linkedin.com/company/isabella-santos-foundation/)

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CONTACT:

Jenni Walker – Walker PR Group – 980-339-8041-office/704-649-6571-cell

jenni@walkerprgroup.com

Revealed! Here are the 2019 honorees in CBJ’s Women in Business awards program

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Originally published on Charlotte Business Journal

For more than 20 years, the Charlotte Business Journal has recognized outstanding local businesswomen through the Women in Business Achievement Awards program — and the time has come to reveal our 2019 honorees.

This signature awards program recognizes 25 female business leaders in the Charlotte region who’ve made significant contributions to their companies, industries and communities over the previous year.

A Lifetime Achievement Award honoree will be announced in the days to come. She will be someone who’s made an impact over the course of a distinguished career, joining past recipients such as Susan DeVore of Premier Inc. (NASDAQ: PINC) and Cathy Bessant of Bank of America Corp. (NYSE: BAC).

CBJ will honor the members of the 2019 class at an awards event Feb. 25. As was the case last year, that program will take place in tandem with our Bizwomen Mentoring Monday event, which offers brief, one-on-one coaching sessions and networking opportunities. A cocktail hour, seated dinner and awards presentation will follow.

Each honoree has been asked to share a yearbook photo of herself and to consider this question: “What were you thinking at that moment when the photo was taken, and what advice would you give her today?” Those responses will be part of the program.

The honorees also will be profiled in a CBJ special report Feb. 15, with additional coverage and photos to come after the awards presentation.

Check out last year’s special section here to learn more about the program, and check out the photo gallery below for scenes from the 2018 event.

Congratulations to the 2019 winners:

  • Zelleka Biermann, city of Charlotte
  • Sarah Taylor Brigham, Sycamore Brewing
  • Tina Craft, Albemarle Corp.
  • Ruby DuBay, Blythe Construction
  • Caroline Dudley, Accenture
  • Carla Eustache, Style Perfect Events
  • Jada Grandy-Mock, Fifth Third Bank
  • Kim Henderson, Novant Health
  • Diane Honeycutt, Team Honeycutt/Allen Tate Realtors and Cabarrus County commissioner
  • Pat Jones, Carowinds
  • Elizabeth Jordan, Deloitte
  • Kathleen Kaney, Atrium Health
  • Cathie McDonald, OrthoCarolina
  • Rima Mehta, PNC Bank
  • Kelly Necessary, Dixon Hughes Goodman
  • Monika Nessbach, Designbar
  • Diana Palecek, Fox Rothschild
  • Scarlet Powell, Unified Technology Systems
  • Kim Rock, EY
  • Jane Rosaasen, Daimler Trucks North America
  • Erin Santos, Isabella Santos Foundation
  • Christine Steiner, Life’s Food
  • Stephanie Titus, Bank of America Merrill Lynch
  • Marcie Williams, RKW Residential
  • Jane Wu, Panorama Holdings

Charlotte’s unsung heroes: They made Charlotte better in 2018 (Part 2)

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Originally published by The Charlotte Observer Editorial Board

Erin Santos with her daughter, Isabella. Santos has responded to Isabella’s death by helping others in similar situations. ANGELO MERENDINO

Each year, the Observer editorial board searches for heroes among us who make our city and region better. This year, we’ve found people who’ve made the most of a second chance, helped dads connect with children, helped students explore and forever changed treatment of cancer in Charlotte. (We published our first two honorees yesterday.) To them, and to all who make our community better, we say thank you!

Reimagining pediatric cancer care in Charlotte

Charlotte’s Isabella Santos was 2 years old when she was diagnosed in 2007 with neuroblastoma, a rare cancer that mostly afflicts very young children.

Her parents couldn’t get the treatment they needed for her in Charlotte. So they took Isabella to Sloan Kettering in New York and to Children’s Hospital of Philadelphia to try to save her life.

 

Even as they cared for their daughter, they quickly created the Isabella Santos Foundation to raise money to fund research at Sloan Kettering for a cure. At first it wasn’t much – they raised $7,000 at their first 5K race in Ballantyne.

But Isabella’s mother, Erin Santos, quit her job at Lending Tree to work on the foundation full time, and she changed the focus. She had had the resources to take Isabella around the country, but she knew other families didn’t, with deadly results. They needed world-class treatment in Charlotte.

So Erin stopped sending money elsewhere and instead worked with Levine Children’s Hospital to treat neuroblastoma here. The foundation raised $1 million last year and $1.4 million this year. It used part of that money to partner with Levine to build an MIBG treatment room, one of fewer than 20 in the country and arguably the best.

Erin Santos and the Isabella Santos Foundation have forever changed treatment of neuroblastoma in Charlotte. But they’re not content to stop there. They have pledged to raise $5 million over five years to have Levine build a rare and solid tumor program that would treat about 15 different rare cancers. It would be the only one of its kind in the country.

Isabella Santos died in 2012 at the age of 7. But her life, through the work of her mother Erin, will benefit others for generations.

For Children with Cancer, Building a Room With a View to a Better Future

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Originally published on Atrium Health’s Daily Dose

Opening one of the country’s few lead-lined rooms to treat rare cancers, Levine Children’s Hospital will soon change the landscape for local cancer care. And Charlotte can thank one little girl who inspired a community to build hope for kids like her.

Toward the end of her fight against cancer, 7-year-old Isabella Santos received a special therapy called MIBG that added 10 more months to her life, including another Christmas and another birthday spent with her family.

Back in 2011, Isabella had to leave her hometown of Charlotte for her MIBG treatment, which can only be delivered in a lead-lined hospital room that keeps the therapy’s radioactivity in check. But today, thanks to the foundation created in Isabella’s honor, children from Charlotte with rare types of cancer can stay close to home to get this cutting-edge treatment.

Levine Children’s Hospital, backed by a $1 million grant from the Isabella Santos Foundation (ISF), will soon open its own MIBG therapy suite – and become one of a handful of children’s hospitals in the country to have one.

This room “is really going to change the landscape” of local cancer care, says Javier Oesterheld, MD, medical director of the cancer program at Levine Children’s. An MIBG room can not only treat children with neuroblastoma – the type of cancer Isabella had – but also be used in advanced clinical trials to test new products on different types of cancers.

“We’ll really be ready for the next wave of clinical medicine,” says Dr. Oesterheld, who also treated Isabella.

A room like no other

LCH’s room has been designed to offer the best patient experience possible. The room is actually a suite – with a separate space where a child’s family can stay overnight.

During Isabella’s MIBG treatment at the out-of-state hospital, her mother Erin stayed in the same room with her and was exposed to a large amount of radiation.

“I felt extremely exposed at the time during the treatment,” says Erin, who is the co-founder and president of ISF. “Of course, I was willing to do that for my daughter, but I feel like keeping the parents safe should be as important as keeping the patient safe.”

The room at LCH will be one of the safest in the nation. More than 20,000 pounds of lead will separate the patient’s room from other parts of the suite.

Despite this physical barrier, the room will have several features that keep patients and their families connected. A lead-lined window will allow them to see each other directly. And an advanced audio-visual system will allow nurses and family members to monitor patients at all times – and even have a little fun.

“We’ve been able to let the parent and the patient play video games together from separate rooms. We have a great audio system where they can constantly hear each other,” says Dawn Bartock, CPNP, MIBG therapy clinical lead and pediatric nurse practitioner.

Erin Santos also wanted the room to reflect Isabella. Her artwork graces the walls, and the ceiling features twinkling lights and a shooting star.

“Every time I visit the suite, I can feel Isabella’s presence,” says Erin.

Community support changes everything

Although ISF has supported individual clinical trials and paid for LCH staff in the past, the MIBG room represents the foundation’s most significant contribution to date.

The room has been on Dr. Oesterheld’s “wish list” for a long time, because he knew how much it could improve care for his patients. And he’s certain it couldn’t have happened without ISF’s tireless fundraising in Charlotte.

“I think it’s monumental that our community has come together to make us the top pediatric cancer program we are,” says Dr. Oesterheld.

And more help is on the way. Earlier this year, the ISF pledged $5 million to create the Isabella Santos Foundation Rare and Solid Tumor Program, which will expand the hospital’s pediatric clinical trials and recruit a national expert on pediatric solid tumors as its endowed chair.

But the room is a tangible – and emotional – first step to improve the lives of so many patients.

“To think that Isabella will almost be gone longer than she was alive… what an incredible impact her seven years of life has provided for other families. I’m extremely honored that this is being built. I’m so proud of it,” says Erin.

We are grateful…

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We are grateful…

We always get sentimental come the holidays… for so many reasons. We have had a big year here at the foundation and not one single day passes by that we don’t miss Isabella.  It’s hard to not think about how her family is ‘one less’ during the holidays.  But good gracious what an impact Isabella’s short 7 years of life on this earth has brought. We are so grateful that her spirit lives on and her legacy will bring change and treatment options for families and kids fighting cancer. 

We are grateful for our supporters near and far.  With every year out from Isabella’s life, less of you knew her.  But you still believe in us and support kids fighting cancer in her honor. From financial donations of any amount to attending an ISF event.  From fundraising with the Dream Team to becoming an MIBG ambassador.  From simply sharing our social media content to telling your neighbor about Isabella or ISF.  It all matters… every single bit of it brings awareness and inspires change.  

We are grateful for our staff and volunteers.  The hours they work is ridiculous. Their passion is inspiring.  And not to mention grateful for the families who support them.  Without the husbands that pick up the soccer carpool duty or the grandmothers who babysit our kids so that volunteers and staff can work events… our team would not be able to do what they do. 

We are grateful for our community.  The businesses that invest in our goals, the owners and leaders who reach past their business pockets to reach into their own, and the partners who make our mission their mission. The relationships we have built with other nonprofits. It’s actually overwhelming.

We are grateful for the kids with cancer and their families that allow us to share their personal stories during a time they rather crawl in a ginormous hole and cry.  Stories of the good, bad and ugly that cancer brings to a child fighting and the family that supports them.  Without these families allowing us into their personal lives, we would not be able to help others see that a change is needed for pediatric cancer care.

We are grateful for the medical professionals who spend day in and night out taking care of kids fighting cancer and their families.  Loving them as their own.  Living as true heroes in their real life stories.  Child Life Specialists, Nurses, Doctors, Staff, Admin and more… every single one of these individuals chose to make it their life work to make a difference towards the pediatric cancer community.  

We are grateful for all the friends past and present who gave so much to Isabella and helped shape our foundation. 

We hope that today brings you a day full of love and much needed time with family.  For those who have that ‘one less’ at the table, you are in our hearts as you move through the holiday season.  We know it doesn’t get easier, but manageable takes on a whole new meaning.  We are so very grateful for every one of you that shares in Isabella’s legacy and can see that together we can do big things.

We are grateful. ????