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. ????

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.”

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)

Inspiring Others to Live Mutual

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By Tim Flanagan, President of MassMutual Carolinas, 2018 ISF Sustaining Sponsor

Tim Flanagan and Caitlin Flanagan at the ISF 5K/10K for Kids Cancer

MassMutual Carolinas is proud to be a Sustaining Sponsor of the Isabella Santos Foundation. As a General Agency of Massachusetts Mutual Life Insurance Company (MassMutual), we are backed by a mutually owned company that has helped people keep their promises, protect their families, and support their communities since 1851. MassMutual calls it Living Mutual, and it’s in their DNA. Ours too: along with MassMutual, we have been committed to serving our clients and giving back to our community since our doors first opened in 1890.

We pride ourselves on living out our core values – balance, growth, authenticity, conviction and stewardship – and ensuring that our clients have a secure financial future and protect the ones they love. Through this and living mutual, we are committed to inspiring others to rely on one another, give back, be interdependent to achieve happiness, make meaningful contributions and to be interconnected with our families, community and workplace.

The concept of living mutual is the core of our involvement with ISF. I have felt personally connected with the organization from day one when I ran – along with Caitlin Flanagan, my daughter and our firm’s strategic relationship manager – my first ISF 5K/10K for Kids Cancer. We hit the ground running in our support of this incredible organization and never looked back. Since then, many of our team members have gotten involved, followed by our firm becoming a Sustaining Sponsor in 2017.

The Isabella Santos Foundation is an upstanding and authentic organization that we value and believe in for many reasons. We appreciate being part of this amazing team, seeing where the funds are going in our community, and being inspired by the faces of who ISF supports. Through our partnership with ISF, we are relying on one another to make a meaningful contribution and impact on pediatric cancer research and patients. That’s a powerful way to live mutual.

Visit the MassMutual Carolinas website

#  #  #

Timothy C. Flanagan, Jr., CLU, ChFC, CFP®, ChSNC™, CFBS, President of MassMutual Carolinas, is a registered representative of and offers securities, investment advisory and financial planning services through MML Investors Services, LLC Member SIPC (www.SIPC.org). Supervisory Office: 4350 Congress Street Suite 300, Charlotte, NC 28209 (704) 557-9600. Parent Financial is not a subsidiary or affiliate of MML Investors Services, LLC. CRN202008-235692

We Run to Crush Cancer

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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.