2019 Isabella Santos Foundation Scholarship Recipient

We are beyond thrilled to announce our this year’s Isabella Santos Scholarship Recipient, John Ford. John  was one of many who submitted an application for a $1,000 community service scholarship. John is graduating from Marvin Ridge High School next Monday and will be attending University of Georgia in the fall. John is on the youth board for Kids v. Cancer and has participated in lobby days, Curefest and Light the Night on behalf of Kids v. Cancer.  Please help us in congratulating John on this outstanding award and his entry to UGA.

By John Ford

My life is rich with volunteer experiences and I am not talking about my service to others, I am talking about those who have volunteered to serve me. As a young child, I was diagnosed with cancer. That diagnosis changed my life. My treatment began when I was 4 years old and continued until I was 9 years old. During that time, many people helped my mother and me as we navigated the harrowing road of pediatric cancer. Just a few of the volunteers that I had the privilege of knowing were the child life specialists who would spend their time playing games and doing crafts with me to ease the pain of my treatment, the therapy dogs and their owners who would visit to help me during those difficult days, the men and women of HomeTown Heroes who raised money to help us with medical bills and who took the children to a local Walmart on Christmas Eve to pick out whatever toys we wanted, and the volunteers at Make-A-Wish who granted my wish for a playset with a clubhouse, pirate flag and spyglass. All of these people touched my life in such profound ways that it instilled in me the desire to do the same for others.

As I grew older and discovered my passions, I realized that I wanted to devote my time to helping other children with cancer. I became a Youth Board member at Kids v. Cancer and have had the privilege of working with Kids v. Cancer to lobby the U.S. Congress for the passage of the Race for Children Act as well as thank them for the passage of the Star Act. I have also represented Kids v. Cancer at Curefest and a Night of Golden Lights at the White House. That was a very moving and humbling experience. I saw childhood cancer survivors, parents who had lost a child to cancer, and children that were battling cancer at the time. I realized how lucky I was to be standing among them and vowed to always strive to use my time and my talents to serve others.

Leading the lobbying team on behalf of Kids v. Cancer was the most meaningful service activity I have done so far in my life. Never before have I felt like I had more of an impact on the world than when I was able to cross my own cancer story with my passion for public policy to help lobby for legislation that has a direct effect on children suffering from cancer. At September’s lobby day, I discussed with the founder of Kids v Cancer, Nancy Goodman, an idea I had researched to add an option on tax returns to donate a portion of state tax refunds to pediatric cancer research. I suggested that we spearhead the initiative in North Carolina. She thought the idea was worth pursuing, not through Kids v Cancer, which should remain focused on passing legislation at the federal level, but put me in contact with people who can help me make it come to life. My next step will be to form the first state-level legislative initiative to pass pediatric cancer research legislation. Ms. Goodman’s words of “No one is doing this – you have to!” has been a driving force in my mind. I have big dreams to help the pediatric cancer community but I know that I need to start small and I am hoping that this first step will launch the change that I hope to see.

I believe that the key to involving local teens in the fight against pediatric cancer is awareness and knowledge. Most teens have no idea what pediatric cancer is all about. They have all seen the smiling faces of the children on the St. Jude’s commercials but they do not comprehend the pain, suffering and horror that envelop those children as they battle for their lives. Compound that with the fact that most teens think that they, and those who are younger than they are, are invincible. They don’t think that their younger sibling or neighbor could ever get cancer. Because of this, I think it is so important to make teens aware of the truth behind pediatric cancer and also the lack of funding available to fight the battle against this disease. If teens in our community understood the truth, I believe that they would rally behind this cause and I know from my own experience with Kids v. Cancer, that once you are involved, it does become a lifelong passion. So how do we educate teens? I believe the best way to educate them is through personal contact and social media. A campaign to spread the word about the Isabella Santos Foundation’s mission in our schools and through social media would have a huge impact. If current high schools students were to be given the tools and opportunities at school to become involved, I believe that a large number would do so. Today’s teens are compassionate and want to help but they need to know about the needs and be made aware of the issues.

Pediatric cancer has residual effects. Because of my treatment I was unable to experience many of the staples of childhood that others tell me about. I could never ride a bike or play sports. It was difficult to see the other kids doing the things that I so longed to do and the experience of watching was truly a hardship in my life. Although, at the time I thought that this lack of experiences was nothing but a detriment to me and my life, I later found out that it was simply a factor of my life that made me who I am today. The constant watching from the sidelines as others played made me more observant and more detail oriented. The exclusion from sports and other activities made me more independent and carefree. The time spent in the hospital and at home, a period in which I spent a great deal of time with adults, made me more mature and gave me an almost inner spirit that has helped me better understand myself and balance my emotions. Most importantly, those experiences taught me that hardships are just that – hard – but that you can always overcome them and often times you are a better, more sophisticated, and prepared person. Because of my early experiences, I have spent a lot of time contemplating my future and whom I want to help. As an undergraduate, my goal is to double major in political science and international studies. I hope to finish my bachelors early in order to complete a master of public administration with a concentration in international policy. I then want to continue my education at law school. My reasons for pursuing these degrees is so that I can participate in advanced levels of research and gain the experience that, particularly in our current political climate, far too many politicians lack. Inexperience often impedes Congress’ ability to draft strong policy, reach across the aisle, and make good decisions as it relates to our country. The result is vague legislation that allows the executive and judicial branches to do the real legislative work. I hope that doing this research will give me the experience necessary to pursue a political career. Although I know that students often change their majors in college, my passion to serve other people will never change and I hope that one day I will be privileged enough to be in a position to help solve our country’s issues, especially the issue of the lack of funding for pediatric cancer research and treatment, through strong public policy

Warrior Moms

“Very rarely are Mom moments captured that aren’t posed. This was a real moment. I knew in this picture that we were at the end and every moment with her was heartbreaking. She didn’t know she was dying, but I knew. She would crawl up on my lap and I would hold her, feeling her ribs and every bone in her body. But my expression would not change, my lip would not quiver and she would not know that I was slowly dying inside. I would just hold her and be her Mom until I couldn’t anymore. The thoughts that were running through my head were deafening, but the words that came out of my mouth to her were different entirely. I held it all in from her and just loved her and made sure she wasn’t scared.” -Erin, Isabella’s Mom

The Pediatric Cancer Foundation reports that 43 children per day are diagnosed with cancer. That’s one in every 285 children facing a cancer diagnosis. Look around your group of mom friends… it could happen to any of us.  Your best friend or sister could very possibly inherit the ominous title… Cancer Mom.  

We have been inspired by the Cancer Moms we have featured this month and we thank each one of them willing to give us their honest thoughts on support.  We have heard and felt their words.  If you missed a story, we ask you to read it (all features listed below).  Every single one of their words deserve to be read. 

And if it were up to us… we would change their title to what they really are.

Warrior Moms.

Defining Support, The Cancer Warrior Mom Series

DONATE TODAY to help us fund much needed programs and research so that kids fighting can BEAT cancer, GROW hair and LIVE their dreams. Your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.

The ISF Skinny – April 2019 Edition

April Executive Director Dish

March is always a big one for us here at ISF.  Isabella’s 14th birthday would have been March 9th and each year we try to think of new ways to honor her but also do it in a way that is respectful of the day.  I’m always anti-birthday cake and a Happy Birthday song on that day and as many of you know – I stay far away to preserve my own heart.   I personally always think blood drives are the way to go.  What better way to honor a life, than to give a life?  

Our relationship with the Community Blood Center (which will be changing their name to “One Blood”, but same community mission and same team) is stronger than ever.  One of the big things I’m working on this year is defining the meaning of PARTNERSHIP.  I saw a quote once that has just stuck with me…

“If you want to go fast, go alone.  If you want to go far, go together.”

Our partnership with CBCC is one of our favorites because we believe in each other’s missions and want to do everything we can to make each other a success.  It really is like a family dynamic for us, much like Levine Children’s Hospital.  So what better way to celebrate Isabella, than with our family?  I loved watching the social media from afar (yup, I got the heck out of dodge).  Of course, we have our old school ISF supporters who have been there from the beginning, but I loved seeing the new wave of ISF sitting in those donations chairs.  I know the lines were long and I can’t tell you how much I appreciate each and every single person who took the time to give.  In all, 239 units were collected and 717 lives were impacted.  I mean… come on.  That’s insane.  I truly can’t express how much this personally meant to me. My goal is to one day have a 500 unit drive and I’m thinking 2020 is our year. 

Speaking of the blood center, my Marketing Director Rachel Wood and I boarded a plane for DC last month as I was honored with a national award from the American Blood Center.  It was such a humbling experience receiving the Larry Frederick Award for our commitment to raising awareness for the need of blood donation.  Larry was there to introduce me and watching him raise a picture of my daughter on stage to a silent room really broke my heart.  Larry was so touched by her story and the people that we met that evening were amazing.  Thank you to Marin Grable and his team for the nomination.  It really was a beautiful evening.

Right off the plane and right into the Jersey Mike’s Day of Giving.   Speaking of great partnerships.  Boy, do we appreciate our Jersey Mike’s partnership!  The team did such an amazing job of spreading the word and wow did our supporters deliver.  Last year we raised just over $135,000 and this year we blew it out of the water raising just over $167,000 for ISF.  The owners of Jersey Mike’s and their staff rocked it out that day in their Cancer Messed with the Wrong Team shirts.  You had to be living under a rock to not see your social media channels flooded with subs.  We love partners in the community like this who understand the importance of giving back.  What an impact they made in one single day on top of a giving month as well.  Unreal.

As you know, one of my other philosophies at ISF is to “Work Smarter.  Not Harder.”  For this reason in 2019 we really narrowed our focus to Charlotte.  We dropped some of our expansion events that were successful, but lots of work and travel.  Instead, we are looking to grow our reach in the Charlotte community.  I feel like the impact we are making here in Charlotte at Levine’s over the next 5 years should be something every single Charlottean should care about – so we are focusing on you.  And not to mention what having a successful nation-wide known rare pediatric cancer program in our city… who and what that will attract.  Simply put, we are working to help make our city better.  For that reason, our May event calendar is slammed.  

Our traditional Coffee for Cure events are being revamped.  As a non-profit, it is important to keep those events new, current, and relevant.  So we have a host of events coming up in May geared around Moms.  Cancer Moms are handed one crappy deck of cards in life and the amount of time they have to spend keeping their children alive doesn’t leave much time left for them to also find a cure for their disease.  So we are working in their honor in the month of May and letting you know how Cancer Messed With the Wrong Mom.  We are not only supporting the Moms who are fighting for children but also funding research so desperately needed for their rare cancer patients. Take a look at the May Garden Parties and let us know if you want to join.  So many of you understand the importance of what we are doing and we need your support.  Attend the events if you can, bring a friend to introduce her to ISF, donate in honor of a Mom, donate in honor of a child.  We just ask that you do something with ISF in May to make a difference.  These kids (and Moms) need your help.

Also, all of these May events have expenses associated with them and we would LOVE to cover them through the generosity of sponsorships.  Thank you to Pure Intentions Coffee who will be providing coffee for all events! Owner, Matt Yarmey, is on our Board of Directors and takes his role in our Charlotte community serious. We love how he has jumped in to help us make a difference. If your business is looking to get in front of the amazing philanthropic community of women in Charlotte, please email me, I would love to talk to about how your business can become a “partner” of ours.  You know we believe in growing great partnerships!!!  

Whew!  That was a busy month!  I feel like I say that every month though.   We hope you all have a wonderful spring break this month and come back energized for the big May events we have coming up at ISF.  And again, thank you for all the support you provided in March that allowed us to have one our best months to date.  You guys are the best. 

Erin (Isabella’s Mommy)

Honor a Cancer Fighter’s Life Taken Too Soon

Isabella passed away at 7 years old from neuroblastoma, if she was here today she would be turning 14 on Saturday. She would be in middle school. She would most likely be into boys. She would be fighting with her siblings at home and meeting friends at the movies.  There is no question Isabella’s life was cut too short, but there is also no question that her legacy is creating hope for so many.

Please join us in honoring Isabella’s life this month: 

DONATE BLOOD:  Make your appointment for March 9th, our largest blood drive ever with Community Blood Center of the Carolinas. Locations throughout the greater Charlotte region available.

DONATE TO ISABELLA’S WISH FUNDRAISER:  Help us fund a wish for another child fighting cancer. Did you read Erin’s blog post about meeting with the Make-A-Wish child we helped fund last year?

EAT SUBS:  Eat at Jersey Mikes all month long. Plan on joining us March 27th for Day of Giving when 100% of proceeds come back to ISF. 39 locations to choose from across the greater Charlotte area.