Tag Archive for: charlotte childhood cancer

An Army of Support

Emily and Kevin know firsthand the impact an army of support can provide a family during a crisis. Their daughter, Claire, was 19 months old when she was diagnosed with Stage 4 neuroblastoma in 2011. They received an incredible outpouring of support and wanted to do the same for other families fighting childhood cancer. So they created Claire’s Army to honor Claire – who passed away in January 2012 – and to continue her legacy of her love for others.

Claire

“Our friends, family, employers, strangers and the hospital teams did so much for us during Claire’s treatments and our time of grief,” said Emily. “We wanted to do for others what others did for us.”

Through Emily and Kevin’s grief counseling at KinderMourn, time spent with other hospital families and discussions with medical providers, they realized that not everyone had support when going through a similar situation. This led to creating the following core programs at Claire’s Army:

CLAIRE PACKAGES: Claire’s Army provides a package to a new family facing a childhood cancer diagnosis at Novant Health Hemby Children’s Hospital and at Atrium Health’s Levine Children’s Hospital. The Claire Package utility tote includes towels, a journal, a gas card and additional comfort items. Valued at $150, the package helps make a family’s hospital stay more comfortable and saves them a trip to the store.

MEAL PROGRAM: Claire’s Army has several restaurant partners and a team of volunteers to deliver made-to-order meals to families at Hemby Children’s Hospital five nights a week. Their goal is to expand to Levine Children’s Hospital in the near future. Since starting this program in February 2014, Claire’s Army has delivered 4,000 meals, which offset a financial burden, provide options beyond hospital food and foster family time.

EMERGENCY ASSISTANCE PROGRAM: Claire’s Army works through oncology social workers to pay for bills to help families who are suffering financially. Emergency assistance can range from mortgage/rent payments, utilities and travel needs to insurance. In one case, Claire’s Army was able to purchase an airline ticket at the last minute for a grandmother to fly roundtrip from El Salvador to attend her grandson’s funeral service. To date, the organization has provided nearly $30,000 of emergency assistance through this program.

“We want to be able to help in any way we can and to make an already awful situation suck less,” said Emily who also spent a few years as a nurse assistant at Hemby Children’s Hospital. “As a hospital provider, it was heartbreaking to see what families go through during a diagnosis, especially if the family was alone with no other support.”

Claire’s Army hosts an annual gala – which raised $200,000 this year – and other fundraisers throughout the year. Funds support these core programs, as well as pediatric cancer research through nonprofits like the Isabella Santos Foundation.

“Claire’s life was very brief, but very impactful,” added Emily. “We hope that the work we are doing is an extension of our love for her and her love for others. We want to carry that on and help these families one at time.”

On the Rebound: Cancer Can’t Keep Alex Sidelined

Basketball was everything to 11-year-old Alex Bogran – until a sudden leg injury left him sidelined last year.

A Lasting Presence

David Lieberman, ISF MIBG Ambassador

Isabella’s presence is POWERFUL.  In David Lieberman’s case, his nieces went to Calvary with Isabella.  David’s sister-in-law shared Isabella’s story with him, and he has been involved with ISF ever since.  

First it started off that his family participated in the annual ISF 5K every year.  “It felt tremendously good to be a part of something bigger than me.”  As David’s passion grew stronger and stronger, he continued to give back to ISF on a much larger level.  Giving back to ISF is “an opportunity to play a small role in the lives of people that are dealing with pediatric cancer.”

Even though David’s family has not been affected by cancer, he has known people who have battled it during their lifetime.  “It is highly probable that cancer will take someone that I love so I am choosing to be proactive in the fight to find a cure.”

David became an ISF MIBG Ambassador, with a goal to raise $5,000 for ISF.  You can help David reach his goal by participating in his raffle.  For $20, you receive 2 raffle tickets where you have a chance to win great prizes and gift cards.  Winners are announced on November 3rd.  For more details, visit www.JoinDavidFightCancer.com.  

That’s ACTION, David, thank you for representing ISF as a MIBG Ambassador.  Isabella thanks you!

MIBG Ambassador

Levine Children’s Hospital will now be 1 of 20 hospitals (and the first in the region) to have a MIBG Treatment room in the U.S.  The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects.  As the new MIBG treatment suite continues to progress under construction, we want to ensure that we are preparing for the kids and families who will be entering this program.  New in 2018, we have developed a fundraising program focused on MIBG Therapy – the MIBG Ambassador.  Our goal for 2018 is to have 20 members collectively raising $100,000 for this initiative.  If you are interested in becoming an MIBG Ambassador, please email info@isabellasantosfoundation.org.  

Fundraising for a Cure

Isabella’s Dream Team, Danni Volman

The ISF Dream Team consists of all types of runners . . . some who have never run before, some who run a race here or there, some who want to strive to obtain a dream they have never achieved, and some who are passionate runners every day.  The uniqueness of Isabella’s Dream Team is what makes it a “DREAM TEAM.”  We celebrate everyone’s achievements . . . including a pretty special person, Danielle “Danni” Volman.

Danni was 4 years old when her mom found out she had breast cancer and leukemia.  Two years later, her mom passed away.  No one can fathom losing their mom, but especially at such a young age.  Danni grew up convinced she wanted to do anything and everything to help find a cure for cancer.  

Through her elementary, middle and high school years, Danni used her love for math and sports to fundraise to help find a cure.  During this time, a teacher at her high school had a daughter who was diagnosed with neuroblastoma.  Danni coordinated a 5k for the school, embracing the power of many to give support and love to this precious little girl. Not only is the little girl still alive today, but she continues to impact Danni’s life to never stop fundraising for cancer.

When Danni learned about the Isabella Santos Foundation, she knew she was going to be involved – – somehow, someway.  She already had neuroblastoma affect her life, and she knew she could help make an impact.  

Danni joined the ISF Dream Team in 2014, still using her love for math and sports to help fundraise for crushing cancer.  She accomplished many races over the last several years.  In 2017, Danni qualified and finished the Boston Marathon for the very first time.   Even though the weather for the 2017 Boston Marathon was the worst weather in its history (30mph winds, 37 degrees, and pouring rain!), Danni completed a dream of hers.  The ISF Dream Team is so proud of you Danni!     

Danni has collectively raised over $85,000 for cancer research, and she is on track for hitting a personal goal this year for the Isabella Santos Foundation – $20,000.  She only needs $2500 to hit this goal.  Let’s cheer her on and make a donation in honor of her mom.

Click on Danni’s First Giving page to make a donation: https://www.firstgiving.com/fundraiser/danni/2018-Isabella-s-Dream-Team

Read Dream Team Member Features

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.

 

We Run to Crush Cancer

It’s always good to keep things in perspective.  Ask yourself why?  Why do you do the things you do?  Why are certain things important to you?  

We asked our Dream Team members at the beginning of this season . . . what is your why?  Why do you run?  Why are you a part of the ISF Dream Team?  Why do you help fundraise?  Here are some answers we received. . . .  

  • To support those who know Isabella and to fight cancer . . . duh!
  • To put a purpose behind my running.
  • I run for ISF to inspire more kids to give back.
  • I run to crush cancer for my mom, Mackenzie who beat Neuroblastoma, and for Isabella.
  • I run because no parent should ever lose their child to cancer.
  • To make a difference of the lives of people fighting cancer.
  • I’m running on the Dream Team because I want to help raise money for kids with cancer and it’s a good mark to leave.

We run to CRUSH CANCER.  Come run with us this Saturday!

Run with Isabella’s Dream Team this Saturday, August 18th.  You can join us at either run listed below.

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.