August Executive Update: August Anxiety Anyone?

August always brought so many emotions for me when it came to Isabella because like clockwork, she would relapse with neuroblastoma every August.

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

It’s a New Decade Executive Director Dish

Here we are in a new year, a new decade!  I have to say, our team at ISF is ready for a fresh start.  2019 brought so many ups and downs for us, by the time the ball was dropping, I was left feeling a little unsettled from the year we just completed.  Each year we try so many different things to grab your attention. I made it a point to pull Isabella back a little and have us introduce you to what was going on in your backyard.  Our Mother’s Day series was our first attempt to really get to know the families at Levine and I was reminded of what a difficult job these Moms (and Dads) have on a daily basis. From this series, new friendships were developed and bonds were formed, as our staff became regulars in the hospital.  

September rolled around and I couldn’t be more proud of what we accomplished for Childhood Cancer Awareness Month.  I have to say, hands down – the “Through My Eyes Series” that our beloved Rachel Wood took the lead on, changed many of you forever.  Our team too. I’m not quite sure she realized what she was taking on, as so many families were eager to tell their stories about what their world looks like as they fight for their lives.  The response was overwhelming, as each post affected people differently. We showed you different cancers, different ages, different prognosis and in the end… different outcomes. It has become a series we will do each year because it changed the way we do everything here at ISF.

To complete the month, we changed the look and feel of Isabella’s race in its 12th year, thanks to the help of Firebirds, Tito’s Vodka and Noda Brewing Company.  The addition of the brunch component was a homerun for all attendees.  I can’t tell you how exhilarating it was to hear all of the feedback from the participants.  A new buzz and excitement were present for the first time in a number of years and it could be felt by everyone!  The race was the perfect bow tied onto the month that we all worked so hard to complete. We continued to roll into the end of the year with another successful Pumpkin Charity Ball, raising more than ever from both events.

However, with the good… can oftentimes come with the bad.  And our last quarter at ISF shook us to the core. Three big losses in two months.  We attended too many funerals. It felt so unfair to watch Rachel devote her life to finding a cure for cancer, only to lose her Mother suddenly to Ovarian Cancer in November.   A Couple of our “Through My Eyes” campaign families, also took turns for the worse. Our Ewing’s Sarcoma warrior, Corey lost his battle with cancer in November and our sweet, cherished Osteosarcoma warrior, Madison lost her battle a couple days before Christmas.  These losses left our team stunned, wondering if what we were doing was all for nothing, if we couldn’t save these kids. I have to say, we pondered some big questions on the state of ISF after these monumental deaths.

So, for 2020 – things are changing.  And they are changing in a big way. Our 4th quarter donation tributes were at an all-time high and we realized that people want to kick cancer in the ass.  We are furious at this disease and find ourselves more determined than ever. We can’t let up, not even for a day.  If anything, we need to remain more focused than ever. For this reason, we are implementing a new mission that we hope will change outcomes forever.  It may have started with Isabella and our mission with Neuroblastoma, but now we have more children and more diseases to take on and we are ready. We have selected national tribute grants in the specialties of Ewing’s Sarcoma and Osteosarcoma in honor of Madison and Corey, that we will focus our efforts on in the beginning of 2020.  These initiatives will help kids nationwide and we won’t stop until we fulfill them. We will also be taking on specific efforts in the field of Rhabdomyosarcoma for our little warrior Merritt, as well as keeping a continued focus on Neuroblastoma for little Brinn, Max and of course in memory of Isabella.

We are going to allow each donation to be focused on what speaks to you, whether it be a specific child, diagnosis, or area of treatment.  Our continued partnership with Levine is progressing with the Rare and Solid Tumor Program, as we anticipate new details to share with you all.  Our look, our feel, our events, our staff and the families– you will see it all change and grow in 2020. We are all grown up and ready to kick cancer in the ass this year.  Needless to say, I think you may want to be around for this ride – because it’s going to be our biggest impact year to date. Stay tuned… we have lots to share in the coming months!

-Erin Santos, Isabella’s Mommy

2020 ISF INTENTIONS…

As you plan for 2020 we hope you include ISF as you set your intentions.   There are so many ways to give back and get involved to make a difference for kids fighting cancer.  We have so many good things happening and we can’t wait to share, but until then we wanted to share a few intentions at the top of our lists.  

Set It & Forget It!: Know you are supporting our mission regularly by signing up for monthly or quarterly giving.  Our recurring gift option lets you set your donation amount once… and forget it! 

Facebook Fundraiser: Facebook makes it ridiculously easy to fundraise for the cause of your choice to help create change.  We invite you to commit to creating a fundraiser for ISF to help impact pediatric cancer. Pick a day to celebrate a cause!

3 Wish Society: The 3 Wish Society is comprised of dynamic, committed and passionate donors who have the influence and resources to significantly impact the efforts of ISF. Donors receive invitations to mission related and VIP social events throughout the year, seats at the annual Pumpkin Ball in late October, receive special recognition via website, social media and at every ISF event. 

Ambassador: It’s simple… sign up, set up your own fundraising page/goal and tune into ISF social media channels for messages to share. ISF staff will provide support every step of the way including an invitation to a kick-off event, tool kit with everything that you need to be successful, gifts along the way as milestones are met and so much more. Engage your family, friends and entire network to raise funds for our vital mission.  Be sure to learn more about our partnership with our Ambassador program sponsor, OneBlood, and learn how donating blood and encouraging others to donate can raise funds in this fight.:

Volunteer: Feel good for doing good.  We have so many fantastic and loyal volunteers, our foundation could not function without each and every one.  Set your intention to volunteer this year by signing up for our ISF Volunteer List. 

Sponsor & Partner: Join us as a Sponsor or Community Partner to make an impact in 2020. It is a great opportunity to increase brand awareness and engage with people in the community all while providing a significant impact on pediatric cancer.

THANK YOU to the following businesses who have committed to be ISF Sustaining Sponsors for 2020: Jersey Mike’s, NoDa Brewing Company, OneBlood, Scoop Charlotte. And to all of our wonderful 2019 sponsors and community partners, we hope you will continue to make an impact with us in 2020.