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Run Dream Team Run

Look at these ISF Dream Team members who ran the annual Isabella Santos Foundation 10K and received an AWARD! Congratulations not only to these individuals but the whole team. All of you are such an inspiration! You train. You show up. You run. You inspire. You fundraise. You win. Cheers to you! We are grateful for your hard work and dedication to ISF, Isabella and kids fighting cancer.

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  • Overall 10K Male:  1st PLACE Brian Levy 38:54
  • Overall 10K Female:  3rd PLACE Danielle Volman 49:19
  • Male 10K Age 1-14:  1st PLACE Jackson Lowry 54:30
  • Female 10K Age 1-14:  1st PLACE Addison Ficker 1:10:34
  • Male 10K Age 60-69:  3rd PLACE Tim McBride 1:01:43

SF 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.

Isabella Santos Foundation Receives $45,000 Gift from All-In to Fight Cancer

CHARLOTTE, N.C. – Aug. 13, 2018 – The Isabella Santos Foundation announced today that it received a $45,000 donation from the All-In to Fight Cancer 2018 Texas Hold’em fundraiser.

“The Isabella Santos Foundation is a wonderful beneficiary partner and we are thrilled to be able to support their mission and make an impact on our local cancer community,” said Steve Amedio, co-founder of All-In to Fight Cancer.

The donation to Isabella Santos Foundation will support research for neuroblastoma and other rare pediatric cancers, including two endeavors at Atrium Health’s Levine Children’s Hospital: the MIBG Suite, a specialized therapy program which is under construction, and the Isabella Santos Foundation Rare and Solid Tumor Programannounced earlier this year.

“We greatly appreciate the generous donation from All-In to Fight Cancer and being among its cancer charity partners,” said Erin Santos, Executive Director and President of the Isabella Santos Foundation. “The All-In Texas Hold’em fundraiser is a terrific event that brings the community together to make incredible things happen for cancer patients in our Queen City.”

About All-In To Fight Cancer

Founded in 2010, All-In to Fight Cancer is a grassroots, nonprofit group dedicated to increasing public awareness and raising money to find a cure for cancer, by hosting Texas Hold’em tournaments. To date, they have raised over $1,000,000 to support the fight against cancer. Each year, they choose benefitting organizations that are doing incredible things in the local cancer community. They are a grassroots organization that is committed to keeping their funding local and as high-impact as possible – every penny of our proceeds goes straight to our partners. For more information, visit http://www.allintofightcancer.org/.

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for neuroblastoma, other 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 works to improve rare pediatric cancer treatment options in an effort to improve the survival rate of kids with cancer. For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation) and Twitter (www.twitter.com/TheISFoundation).

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CONTACT:

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

jenni@walkerprgroup.com

The Best of Times, The Worst of Times: Two Sides to Every Story

Contributed by Wheela Sunstrom

They say time heals all wounds

Isabella Santos lost her battle to neuroblastoma at the age of 7.

For some, this is a myth…something that people say because, well, they don’t know what else to say. It’s something we hear throughout our lives, but never really weigh the meaning of until you have to. Because for some, no matter how much time passes, grief never goes away.

We have learned in our ISF journey that grief and happiness are all about perspective. When people perceive our organization, they generally see all of the good things we do!  From funding research and programs to supporting families in need to running events to a myriad of other accomplishments, they see hard work for the greater good. They see Isabella’s smiling face printed on glossy paper or cast high on a projection screen, their hearts overflowing for the brave little fighter.  They see volunteers, board members, sponsors, doctors, nurses, and families – a sea of purple – working tirelessly, but positively, to effect change.  They see congratulatory hugs, high-fives, happy dances and the like when something great happens.

What they don’t always see is the other side.  Though Isabella’s mom would normally be included in the list above, it’s a hard realization that every time ISF does something amazing, she is reminded that her child wasn’t afforded the opportunity. This is where happiness and sadness become muddled.  When Isabella’s name is attached to new programs, buildings, research, and anything else, Erin experiences the proudest moments of her life. And also the worst.  Her perspective has always been real and raw, shedding a different light for those who may only perceive our progress.

Isabella’s birthday is no different.  On the one hand, ISF is celebrating her life and the legacy she left behind.  A legacy that led to a momentous milestone in the addition of an MIBG treatment room to deliver targeted therapy to high-risk neuroblastoma patients.  This. Is. Huge.  ISF celebrates the incredible, rare opportunities this treatment room will provide for patients and their families. We shout, we high-five, we do a happy dance. It is a culmination of tireless work in Isabella’s memory, aptly unveiled on her 13th birthday. On the other hand, her mom is reminded that this was the treatment Isabella received a little too late. It stings. It gnaws. It burns.

We have learned everyday that grief and happiness can coexist. We will still smile and share the joy of our latest accomplishment, the gift of the MIBG treatment room. It’s okay for us to be happy about the things we are doing. And it’s okay to celebrate the birth and life of the brave little fighter on what would have been her 13th birthday.  Because, without her, none of this would be possible.

And it’s also okay that there is another side. The side where heartache sits. Because sometimes they go hand-in-hand.

13 – What Should have been, what could have been, and what it is

Written by Erin Santos, Isabella’s Mom

Erin Santos & daughter Isabella. Isabella lost her battle to neuroblastoma at the age of 7.

Tomorrow Friday, March 9th is a big one. 13.  Sure, each birthday number has a different meaning, but when I hear the number “13”,  it’s a big one for me. Luckily there are only a couple more that might really be daggers in the heart. 16, 18, 21 – I see you all waiting for me off in the distance. I will get to you eventually, but tonight – I’m staring the dreaded 13 right in the eye.

I guess because it means she no longer would have been a kid. Teenager is a scary word. First of all, I feel too young to have a teenager. Maybe because I’m single, I listen to dirty rap music, stay out too late,  and want to sleep until noon on the weekends – all traits of a teenager I guess. But then it had me thinking – is that what teenagers do? In true Erin form I constantly find myself avoiding girls her age. I don’t want to stand next to them because it would tell me how tall she would have been. I don’t want to listen to what they are talking about or think about the fact that they all have periods now and wear bras. In my head it seems crazy to me that she could have ever been one of those girls. My mind just won’t let me go there. But as I sit here and think about her, I realize that I prevent myself from knowing what 13 year olds girls are like. How do you know about them if you don’t have one? It’s definitely not something you can look up on the internet without getting flagged. TV doesn’t really depict true 13 year old girls either. So I decided to research it a bit.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

I find an unsuspecting person who has a teenage girl and just say, “Tell me everything she is into”, which I’m sure is a creepy question. But as they start talking I find myself  ridiculously-filled with questions that I almost have to sit on my hands. Questions start out basic enough, like: what kind of music does she like and does she have a boyfriend yet? Then, 40 questions later, I feel like I’m just getting started and have to prevent myself from having the full 2 hour interview I really want.   They listen to all kinds of music from electronic to rap to everything in between. They like SnapChat and Instagram Stories. They have boyfriends who they hold hands with at the mall. They only see this boy in group settings but ignore him at school. They are all at this tipping point of looking like kids one minute, then transforming into a woman the next, with the help of a dress and some makeup. They are into fashion. They binge Netflix. They want to go to the Melting Pot on their 13th  birthday with their friends and catch a movie after. Their girlfriends occasionally turn on them and the drama that ensues can be pretty hurtful. They are sweet and moody all at the same time, probably due to the period they just got for the first time this year. They can curl up to you like a baby one minute, but then have the most adult conversation the next. I could go on and on…

The coolest thing about finding these things out isn’t always the answers. Sometimes it’s hearing the excitement in the voices of parents as they talk  about them. While all the attributes they are telling me feel like tiny knives going into my heart, I find myself knowing that I, too, would be that boastful parent.  She would drive me crazy I’m sure – but all the little things that would have made her up would have been a little piece of me – the good and the bad. It would have been exciting to be a part of her ride to 13. As I digest all the attributes of a “normal” 13 year old, I find myself with this gut- wrenching feeling. Sure, some of it is jealousy… but some of it is the thought that this is what she should have been like.  Instead, I look at the life that was more realistic for me. She could have beaten the cancer, but then we would have had a 13 year old that probably wasn’t anything like the girl I described above. When you sign off on treatment plans, the list of side effects is an afterthought. To be honest, you really stop even reading them. The list is so horrible but at the time it doesn’t matter. You are just trying to keep her alive.

I think about the 13 year old that would have survived after years and years of grueling treatment and over 5 relapses.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

She has hearing aids due to the cisplatin that you gave her over and over. She is missing teeth from the chemotherapy cycle they properly named, “Kitchen sink” because that’s what it was. She’s a full 18 inches shorter than everyone because her body was never able to grow. She doesn’t play sports because her bones are so weak from the radiation you hit her with over and over. She struggles in school because she now has learning disabilities thanks to 5 years of treatment. Oh and she is probably held back because she missed so much school from being in the hospital so much. She is missing patches of hair due to brain radiation that prevented some places from ever growing back. She has trouble making friends because she is different and the friends she has feel like pity.

Let’s not even talk about a boyfriend or the road she has ahead of not being able to have children. She hates you because she is different and she blames you for it. And just when she figures out how to adapt to the cards she is dealt, she is diagnosed with ovarian cancer at 15 thanks to the high probability of a second cancer. This. This is what could have been.

You want to keep your child alive, every parent does. But sometimes they don’t survive. And you look at what could have been your life if they did and that scares the shit out of you too. I oftentimes wonder if she was taken because what could have been might  have just been worse. I know you aren’t supposed to say that because having them alive with a million problems is better than not having them at all, right? Right?

Erin Santos & daughter Isabella.  Isabella lost her battle to neuroblastoma at the age of 7.

Instead I get to look at what it is. For me, her 13th birthday will consist of opening my eyes tomorrow morning and being crippled with pain inside. I will get Grant and Sophia off to school and sit in my kitchen alone with a cup of coffee and cry my eyes out. It will eventually stop and I will get in the shower and distract myself. I will pick out a purple dress and dry my hair. I will pray that my eyes are not puffy and put on makeup to hide my face. I will drive up to Levine Children’s Hospital and cry again as I make my way along the path we drove for years to get her treatment. I will tilt my head to the side so the tears do not remove my eyeliner. I will put on my best ISF face as I enter the lobby of the hospital, knowing to keep the conversation light because if the wrong person says the wrong thing to me, I will find myself imprisoned in the bathroom.  I will make an inappropriate joke and thank large donors and supporters for coming to celebrate the new MIBG room we are building in Isabella’s name. I will carefully not watch the clock strike 11:12 am, the time she was born.

My ISF team and I will go to lunch where I will drink wine and pray they keep the conversation light. My drive home will be spent calling my Mom who will cry with me and tell me how much good has come from her short little life. My sister will call and will know to talk about everything except Isabella.  Someone will leave an anonymous gift on my porch to let me know they are thinking of me. The kids and I will take flowers and balloons to her site and they won’t really grasp the level of this visit but will kiss her stone and say “Happy Birthday”. I will sleep off the wine, troll social media then try to plan a night out of the house. My girlfriends will take me out and get me stupidly drunk, trying hard to have no real conversations with me about what my day has been like. They will try hard not to touch me because if they know me, a hug might break me in two. I will anxiously wait for the clock to strike 12:00, knowing this awful day is behind me. I will fall asleep in my clothes.

That is what Isabella’s 13th birthday is because my daughter got cancer and she died. Not at all the day I had planned for her when she was born, but now it is what it is. But on March 10th and in true Erin fashion, I will get out of bed and start another day, keeping the mission moving.  24 hours goes by slowly and painfully but in the end, it’s still just 24 hours.

I can do this.

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Sydney, 13 year old, wishes to visit the Harry Potter museum in London.

Let’s Become a WishMaker Together in Honor of Isabella’s Birthday

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  

There is a girl fighting cancer, Sydney, who is 13 years old and wishes to visit the Harry Potter museum in London. We can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday.

Please donate to help make Sydney’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal by March 31.

DONATE HERE

*Donations made to this campaign are a gift to the mission of Make-A-Wish. Each contribution will be pooled with other gifts to grant the wish of the child shown above or of other eligible children. Costs shown are estimates. All wishes listed will be granted.

My gift to her…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind. 

My gift to her…

Speech given by Grant Santos (Isabella’s Brother) at the 2nd annual Coffee for a Cure Events.

Isabella and Grant

“Hi, my name is Grant Santos and I am Isabella’s little brother.  Isabella was diagnosed with Neuroblastoma just 6 days after my 1stbirthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

Isabella and Grant

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her is to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.”  -Isabella’s Brother, Grant

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

Hope Is Definitely Brewing

Photo courtesy of Daniel Cordero

We are absolutely thrilled to announce the results of our 2nd Annual COFFEE FOR A CURE. Just a few short weeks ago, more than 700 men and women gathered at Carmel Country Club in Charlotte, NC to not only learn more about Isabella’s story …but they also gathered to fill a room with hope.

Hope for a cure. 

This two-day event served as a call to action in the fight against pediatric cancer and to educate community members on the importance of bringing pediatric cancer treatments home to Charlotte.

Greg Olsen & Grant Santos, Photo courtesy of Laura Stikeleather

We are blown away, humbled, honored, and beyond grateful that the event raised $185,000 and donations keep coming in.  Not only were we excited to have Carolina Panthers’ Greg Olsen, WBTV Host Molly Grantham, Charlotte Lifestyle Personality Emily Maynard and Levine Children’s Hospital Head Oncologist Dr. Javier Oesterheld as key note speakers, but we were also honored to be joined by several other community supporters who touched everyone with their words: Grant SantosJackson & Tammy Lowry, and Melanie Miller.

During the event, we introduced our new major gift society, called The Three Wish Circle, With an annual gift of $5000 or more, donors can take their support of the ISF mission to the next level by funding more research for Neuroblastoma and help to bring innovative treatment options to our local community.  We were blown away that within 3 weeks of launching it, 15 individuals had already committed to it. If you have questions or want to know more about how to take your support to the next level, contact our ISF Development Director, Tia Wackerhagen.

Levine Children’s Hospital Head Oncologist Dr. Javier Oesterheld, Photo courtesy of Laura Stikeleather

Additionally, we recognize someone in the community each year, who lives a life with the same dreams and aspirations as Isabella and who is trying to make a difference in the world.  This year at our Coffee events, we were excited to recognize not only one, but three great people with our 5th Annual Isabella Santos Award.  Congratulations to Jackson Lowry, Lisa Weaver and Stephanie Grigg. Each of these three individuals have given back to their Charlotte community in different ways and we are super grateful to have them support ISF and other local non-profits.

Lastly, we could not have put this wonderful event together if it wasn’t for the support of our community businesses who help us through their sponsorship. It is through their passion for charitable giving and making a local impact that we are able to continue Isabella’s fight.

To everyone who supports us…we cannot begin to put words to how grateful that we are for the impact you are helping us make. We are so proud of what we have accomplished together and it is because of YOU. We do not do this alone and could not continue our fight without your help. We humbly thank each of you and look forward to a world with no more cancer where we will beat cancer, grow hair and live the dreams of all children fighting the fight.

With gratitude,
The ISF Team
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THANK YOU TO THESE INCREDIBLE BUSINESSES FOR SUPPORTING
THE 2017 COFFEE FOR A CURE:
Brighthouse Financial
Maxim Tickets/PSL Source
Bull Engineered Products
Community Blood Center of the Carolinas
Diamonds Direct
Carolinas Healthcare System
Levine Children’s Hospital
Charlotte Radiology
Novant Health Carmel OBGYN
Morgan Property Group
Pegram Superior Insurance
Tom Bush Law Group
Dermatology Laser and Vein Specialists of The Carolinas
Center for Integrative Sleep Medicine LLC
Captrust
Scoop Charlotte
Next Stage Consulting
GloBody
Southpark Pediatric Dentistry
Pure Barre
Southpark – A Simon Mall
Sign Up Genius
Little Nest Portraits
Moxie Mercantile
Magnolia Cottage Design
Blooming Events
Royal Cup
Pink Petunia
Stikeleather Photography
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VIEW EVENT PHOTOS BY LAURA STIKELEATHER HERE