Tag Archive for: charlotte pediatric cancer foundation

May Executive Director Update: It’s All Coming Together

Read ISF Skinny, May Edition

How is it May already?  It seems like just yesterday we were cancelling our “Breakfast at Tiffany’s” event and said goodbye to our Jersey Mike’s Day of giving.  Needless to say, we had a rough March here at ISF.  $450,000 in revenue (roughly 1/3 of our entire year) – gone in one week.  I’m not going to lie here – we were pretty devastated.  The effect of COVID has triggered rippling effects through every kind of family and business in our area.  For many businesses, we wonder if we will be able to survive when this whole thing is behind us.  Or, if life will be so different, there might not even be a place for us at the table anymore.  Even as someone who works in non-profit, I have found that my charitable giving has come to a screeching halt.  My focus has turned to making sure my favorite local businesses are surviving because they are the heart of this city.  But I also have to be aware of what we are trying to do at ISF.  The employees I have, the families who are counting on us, the aspirations of Levine Children’s Hospital.  These things still linger out there so here at ISF, we can’t stop, and we won’t stop.

Luckily for us, we have found ourselves at an interesting crossroads.  With our month of March being pulled out from underneath our feet, we could have been defeated.  But, sometimes in life you are given a gift that can never be repaid.  Our presenting sponsor of the Breakfast at Tiffany’s event believed in us.  They believed in what we were trying to do.  When I received the call from the JEM Project in early March, telling me they were going to grant us the $250,000 we had hoped to raise over the two mornings to continue on our mission – I was speechless.  This was the largest gift ISF had received in the history of the Foundation and it was made by two women who never even met my daughter.  The JEM Project gave ISF hope again and reminded us that there are people out there in this world who can change your life.  We can’t thank them enough because not only did it keep us plugging away for all these families, but it honestly brought the staff of ISF to a level of positivity that was needed in all this mess.  We will never be able to thank the JEM Project enough for all they did, we can only hope we can make them proud.

As we continued through the month of April on quarantine and the “Stay at Home” order was issued, things became eerily familiar for me.  See, for these families with cancer – quarantine is a way of life.  I can’t tell you how many weeks upon weeks my family spent staying inside, afraid of what was lurking around that could potentially harm (or kill) my child.  Masks, hand washing, isolation… these are all words families with cancer know all too well.  When we talk to our families, they all seem to say the same thing… Welcome to our lives!  However, pediatric cancer quarantine looks a bit different because while being locked up inside – these kids have to watch everyone else living their best lives.  Kids are in school, playing soccer and planning vacations – all things we had to just watch others do over social media.  So maybe next time we complain about how bored we are or how much we miss our friends or miss going out to dinner – remember that you are getting just a tiny glimpse into the lives of these families.  24/7 indoors with your healthy kid can get tough.  Just imagine.  

Speaking of our families… here at ISF we want to do everything we can to help them.  We want to build programs, facilities and most importantly we want to build teams of experts who can bring these programs and facilities to life here in Charlotte.  We have talked about this for so many years and I’m excited to say – it’s all finally coming together.  

Erin presenting Dr. Giselle Scholler $200,000 for DFMO Trial

Let me bring you back to the spring of 2015.  We decided to put on a breakfast and raise some money.  I had heard of a Doctor in Grand Rapids who was single-handedly changing the entire landscape for kids with Neuroblastoma.  She had developed a drug called DFMO (not Dance Floor Make Out in case you googled that).  This drug was showing off the chart results as a pill that you can give you child who is in remission from Neuroblastoma.  Side note: sometimes NB can be beaten – but keeping it from coming back is the hard part.  This DFMO she developed was working.  It was keeping kids clean and keeping them in remission and with minimal to zero side effects.  We had to support it.  We contacted Giselle Sholler and said we wanted to help and with the help of our first Coffee for a Cure we raised $60,000 for this trial.  We flew to Grand Rapids a couple of weeks later, met this incredible woman and presented her with a $200,000 check.  Kids in Charlotte were receiving DFMO and they were beating this disease.  

Fast forward to April 28th at 12:00.  Just a couple of days ago my team and I had our first call with the new Chair of the ISF Rare and Solid Tumor Program at Levine Children’s.  Meet Giselle Sholler.  

We got her.  And let me tell you – she is out of our league.  The recruitment of Dr. Sholler from our favorite Dr. Oesterheld was months and maybe a year in the making but he did it.  What does this mean for Charlotte?  Well to put it simple.  It means everything.  We just hired one of the top Doctors in rare pediatric cancer in the WORLD.  That’s right.  She is now coming to Charlotte thanks to your donations over the last year.  I may be a total dork but this one-hour call with her had me so giddy I could barely stand it.  Everything she said was music to my ears.  The team she is building, the trials she will be starting – all of it.  Here in Charlotte.  There is no bigger fish.  We got her and we can’t wait to tell you all about it as she starts her move here to the Queen City… insert standing ovation!

So where does this leave us?  Yes.  We got a monster donation.  Yes.  We got the biggest Doctor in the UNIVERSE to come to Charlotte.  So, what do we do now?  We kick this whole COVID thing in the teeth.  Listen, are things going to have to change.  You bet.  But we are welcoming the change and we hope you will too.  We have our signature events coming up in the fall and we don’t know what in the world they will look like.  But like I said before, Can’t Stop, Won’t Stop.  We MUST make our events safe for our families to attend.  If little Brinn and Merritt can’t be at the race – what do we need to change?  Then let’s do it.

Our team is excited.  I have to say, I’m kind of stupid excited for all the things we have in the works.  We have a big announcement coming up on May 26th and we need you behind us to make this successful.  We aren’t going anywhere, and we hope you won’t either.  These kids are counting on us.  We built the MIBG room.  We brought the best Doctor here.  Now we build out this program, the research follows right behind it and change happens right here in Charlotte.  But we need you to make it all come together…

Who’s with me?

-Erin, Isabella’s Mommy

Read ISF Skinny, May Edition

Facebook Fundraiser Feature: Emily & Gia

This Facebook Fundraiser hit us in the hearts when it showed up on Isabella’s Birthday in March! We are so honored Emily chose to raise money for ISF in Isabella’s name for Gia’s birthday (and Isabella’s!). Emily and Gia surpassed their $250 goal and raised $335 during the day. Thank you from the bottom of our hearts Emily, Gia and friends for your support!

[March 9, 2020] “Today is Gia’s birthday. I’ve been able to enjoy a decade with her – the best ten years of my life. What a blessing it is to be a mom, and to have a healthy child! Today would have been Isabella’s 15th birthday, but she didn’t live to see her 8th. Every year when this day rolls around, I am thrilled to mark another year with my best girl, but that joy always comes with a pause as I think of Isabella. 

I got to meet Isabella when I worked at the Ronald McDonald House of Charlotte. She would show up with her mom or dad and help us to fundraise. Even though she and her family were going through one of the most difficult things any family can go through, there they would be, out helping us to raise money for other families who had children being treated at the hospital. I was always in awe of this dedication to assisting others.

I don’t have much to give, but I gave anyway. I gave because I am so blessed to have a healthy child who is celebrating her 10th birthday today. I gave because I truly believe that every dollar matters in the fight against pediatric cancer. I gave in honor of Isabella.” 

-Emily, Gia’s Mom

Thank you to Victoria and Jolee for fundraising in March. Thank you to Linda, Crystal and Gwen for setting up Facebook Fundraisers in April!

Want to help make a difference for kids fighting rare pediatric cancers? Create your ISF Facebook Fundraiser here: facebook.com/fund/IsabellaSantosFoundation/

Asking Others to Give Back For My Birthday

It’s Erin, Isabella’s Mommy… today is my birthday. Each year, I try to act like my birthday isn’t that big of a deal, but for those of you who really know me… it is. In years past it has really been a celebration that lasted well over 10 days. There were private celebrations, lunch celebrations, a girl’s trip, some kind of romantic thing – I loved it all. Maybe it is because there aren’t many times throughout the year where I feel comfortable celebrating myself. Mother’s Day? Forget about it. Christmas? I pride myself on being a great gift giver and love that. So… my birthday is the one day that I can and that is all me.

Some people have birthdays that are during the best times of the year. One of my friends has a Cinco de Mayo birthday… um, I want this. My birthday , on the flipside, is the WORST time of year. February 2nd. Groundhog Day. Also, often times falls on SuperBowl, which is hands down the worst birthday for a woman – ever. So maybe this is why I take the day on and try to make it my own.
But now that I’m a grown adult, I don’t anticipate the birthday for the gifts that I’m going to get. I don’t have that pair of shoes on the wish list for months, waiting for this day so I can unwrap them in a fancy restaurant. These days, I buy absolutely ridiculous shoes like most women – when I can’t afford them, on a bad day of work. But… it is never a regret.

So, at the ripe (and I mean ripe) old age of 43, I chose to do the responsible thing ask others to give back. The death of Madison Fedak over the holidays shook me. Like, rattled me to the core. I kept my distance from her for a long time because she reminded me so much of Isabella. Her look, her demeanor, the way that she interacted with Rachel, even the way that Sophia became so drawn to her. Then she went into remission. I let my guard down because I felt like it became safer. This little girl was going to make it and she could be one of those stories I was so happy to be a small part of.

Then, she relapsed. As a parent of a child with rare cancer, relapses aren’t good. All this work we do, all this money we try to raise… and I’m watching it take one of my favorite people I have met since Isabella died. I remember texting her Mom, while crying and apologizing that we didn’t do something fast enough for her. It was that helpless feeling all over again. This family would speak at our events and drive two hours from their hometown, if we asked, and in the end – it felt like it was all for nothing, because the dreaded story ended the same way. To be honest, I began to question what we were really accomplishing here at ISF.

But, a couple of weeks after her death, I finally had the strength to write a letter to her mom. This is a horrible club that we belong to. But sometimes, someone is sent to us and then taken away. And way too soon. But in their absence, change is made. Isabella was one of those kids, and Madison is another. While I know this doesn’t make the loss any different for her parents, I know that it will over time.

So instead of buying (those overly expensive and way too impractical shoes that seem so “fun”,) I’m asking for donations in honor of Madison. Because she is one of the reasons we are doing what we are doing here at ISF and because she was one of those kids. There was something really special and I want to honor her because she truly was so much like Isabella. That is truly the best birthday gift I can think of. We selected an Osteosarcoma trial in her honor and it’s so much more important than these shoes. Best part, it’s crazy easy to do these birthday fundraisers. Facebook targets you right around your special day and ASKS you if you want to create a charity fundraiser for your birthday. I saw it and thought, “Hell yes.”. A couple of easy clicks later, I set a goal and clicked “share”. The first night I raised over $500. I woke up to donations and smiled because I realized that maybe this is the birthday present we should all give ourselves.

…But. I’ll eventually get the shoes too. 😉

My Facebook Fundraiser