Mother-Daughter Duo Making a Difference

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Charlotte and Jennifer Gaston

Charlotte Gaston was just 11 years old when she got involved in the Isabella Santos Foundation. Her mom, Jennifer, was serving on the ISF 5K/10K for Kids Cancer marketing committee and brought Charlotte to a meeting. It was there that Charlotte shared some great ideas and was asked to join the committee.

Since getting involved in 2012, Charlotte has volunteered on the marketing committee and at the race, run in the event, and used her creative skills to fundraise for ISF. She made earrings and hair ties to sell for donations for ISF, and painted a canvas at Bella’s Birthday Bash at Small Hands Big Art. The painted canvases from the event were used in various ISF events throughout the years.

“I was just along for the ride with Charlotte’s great ideas that she brought to the table,” said Jennifer. “Charlotte and I have volunteered, distributed race materials to retail stores and have done her projects together. Sharing this experience with her has been very rewarding.”

Charlotte also helped coordinate ISF’s T-Shirt contest where she brought together students from area high schools to collect the entries and select the winning design, which was featured on the kids’ race shirts. In addition, she assembled bracelets for ISF’s Coffee For A Cure.

“It is so cool seeing how much the Isabella Santos Foundation has grown and the impact we have all had over the past six years,” said Charlotte who is now a senior at Ardrey Kell High School. “I want to stay involved as much as possible this year before I head off the college.”

Jennifer also continues to stay involved as a volunteer for the race and Coffee For A Cure, and is passionate about introducing her friends to ISF. “Volunteering with the Isabella Santos Foundation has been a great experience for both of us and has helped Charlotte see what an organization like this is capable of with the support of a lot of people,” says Jennifer. “This experience has been very meaningful and will help her in college about how to get involved and make a difference.”

Isabella Santos Foundation 5K & 10K (Fox 46 Good Day)

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September is Childhood Cancer Awareness Month. Find out how you can raise money for a cause by lacing up your running shoes.

To watch the full video please go here.

September is childhood cancer awareness month (NBC WCNC)

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September is Child Cancer Awareness Month and this month, you can help kids in need with the Isabella Santos Foundation.

To watch the video please go here.

Awareness… What a Bullsh*t Word

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Originally published on HuffPost, written by Erin Santos

(Written and published 5 years ago, this article is the perfect reminder of why we refer to September as Childhood Cancer ACTION month)

a·ware·ness
noun

1. knowledge or perception of a situation or fact.
“we need to raise public awareness of the issue”
2. synonyms: consciousness, recognition, realization

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, “Awareness. What a bullsh*t word. That word is the problem.” And just like that, this blog post was born.

I’m sure the word “awareness” comes from back in the day, when no one spoke of cancer. The “C” word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn’t have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn’t even have been enough time for me to get her story out to you. So, awareness month was a good thing back then… hey, meet this little 3-year-old with cancer… Nope, wait.. She’s already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don’t get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan’s shorts were in NYC the other day… “Oh, no she didn’t,” you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percent of the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children’s cancer drugs aren’t profitable. Ouch.

There is some awareness for ya!

2013-09-04-Isabella_Santos.jpgSo, back to my issue with this “awareness” word. The movement I want to start is this… Let’s maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That’s right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness. “Awareness.” Check. But then, when you get in your car to take the kids to school, go to work, go to the gym… think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer “ACTION” Month. Do something that day that is action to save a child’s life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can’t think of something to do for 30 days? Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are. Probably because they don’t have it… yet. Or maybe because we are all so “aware” of cancer, but aren’t taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just “SNAP,” gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I’m aware. I’m aware that she’s no longer with me. I’m aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I’m aware that Isabella should be in the third grade this year. I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I’m aware that my 6-year-old, Grant, has nightmares about her. I’m aware that every day for the rest of my life I’m going to feel like there is something missing. I’m aware of a lot. So, the word “awareness” works really well for me in my life. Describe my life in one word, actually, and it’s probably “awareness.”

So, let’s not make this month about just liking a Facebook e-card about cancer or reading a family’s caringbridge entry and then walking away. Let’s all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

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TURN YOUR AWARENESS INTO ACTION:

  1. DONATE
  2. VOLUNTEER
  3. REGISTER FOR 11 TH ANNUAL 5K/10K RACE (SEPT 29)

MIBG Ambassador: Melissa Scanlon

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Gemma & Melissa Scanlon

Last year, a little girl named Gemma Scanlon was diagnosed with Wilms tumor (a pediatric kidney cancer) on her 3rd birthday.  Instead of blowing out candles, the Scanlon’s family was faced with their daughter having cancer.  

Gemma received amazing care at Levine Children’s Hospital.  Dr. Pope and her team took care of their family with compassion and made a very difficult time so much easier.  The Scanlon’s were very grateful that their daughter’s cancer responded well to treatment, and just over one year they are seeing clear CT scans.

“I know the reason we have a great treatment protocol is because someone else raised money, did clinical trials and built facilities because the funding is sadly very limited.  It’s our turn to help the families that don’t have good options yet.  The ISF MIBG Ambassador program is designed to do just that.” 

Melissa is one of our MIBG Ambassadors through the Isabella Santos Foundation, fundraising to help make a difference. She is committed to help raise $5,000, knowing that it will help other families who are battling pediatric cancers right here in Charlotte.

“You can literally see the MIBG room being built uptown.  Kids in the Carolinas battling cancer will have better options for treatment here at home and that is awesome.”

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.