Tag Archive for: charlotte childhood cancer

DWTS Blog #3: Seriously, why did I sign up for this again?

/in , /by

Written by Erin Santos, ISF Executive Director & President

Current status… not in last place.  I’m in second to last place.  Thanks to some sponsorship funds from Barings, DHG and Fifth Third Bank and some serious votes coming in from my friends at Levine – I have slowly moved to almost $47,000.  I’m a far cry from these 2 gentlemen who are well over $200,000.  (Which is honestly incredible.)   But I find myself being a little less depressed with my current number.  I have lots of people reaching out to me, asking how they can help.  Sadly, my answer is only to vote – because that’s all that moves my needle.  So, ask your friends, ask your friends who own businesses, or anyone really!  Every single vote counts.  

I also have 10 tickets still on hold, but I lose them to the general public  TOMORROW on February 14th.  So, all of you last minute people who want to come (and those ticket dollars count as votes), here are the instructions on how to get them.

Instructions for how to purchase from the held back tickets

1.    Please visit the website here and make a donation of at least $350 to equal one Gold ticket, $700 for 2 Gold tickets, etc. Once the transaction is received it will be recoded from donation to tickets.

2.    Within the guest names field please indicate “Gold Ticket Purchase” and the names of the guests using the tickets.

Day?  I have lost count… so now I will just ramble.

I love my drive up to DWTS rehearsal because I take the 30 minutes to blare the music in my car and walk through all the steps in my head.  Not to give anything away on my actual performance but today I’m playing the song “Baby Got Back” so loud my windows are shaking.  For those of you who know me, you know this was once my go to Karaoke song.  I absolutely HATE Karaoke and had such a horrible performance of this song maybe 8 years ago that I swore it off forever.  But this song has still been in heavy rotation in my house for years because I think it’s absolutely hilarious.  Now, if you ever look in my house windows – what you will find is probably me in the kitchen dancing to the most ridiculous songs.  My kids and I have always had no shame in busting out moves just about anywhere.  I dance all the time in the house, the car, the shower – everywhere.  And I’m raising kids that do the same.  My son is kind of an awesome dancer too and will break out today’s hottest moves on the sidelines of the football field, at a nice restaurant – anywhere.  Kind of like his mom.  Sophia has some moves too and we are constantly trying to get her to quit the Dab.  I find that her moves tend to be a little too sexy for her age too.  Yikes.  I’m probably to blame for this.  

But this Sir Mix a Lot song brings me back to my other child.  Bless her heart.  Isabella was quite possibly the WORST dancer of all time.  This girl had a beat in her head that was nothing like what was actually playing.  However, she didn’t give a damn.  This bald child in a dress would dance and dance, all while carrying a tune that was so off key that it was difficult to be around.  But one thing is for sure – dancing made her so happy.  We would have garage parties with our neighbors, blaring the most child inappropriate songs over the speaker with bottles of wine around us.  Occasionally one of us would get up and bust a move, but she would always trump us with her horrible white girl moves.  We would cheer her on and giggle under our breathe and she ate it all up.  It makes me chuckle just thinking about it.  So, while you may think a 42-year-old Mom from the burbs of Charlotte, dancing on stage to Baby Got Back is weird.  Just know all these songs have meanings and memories of a little 7-year-old girl that knew every word (even though she shouldn’t) and danced her little heart out beside me in the kitchen as the songs played through my house.  I think she would have loved me being up there on stage and really make a total ass of myself.  But she would also sit in her seat and find a beat with her foot on the ground and probably laugh knowing these are all the songs we would dance to in the kitchen as I made dinner too.  

Now on to the dancing… or at least what kind of looks like dancing.

Day 12

It’s time to start piecing this routine together.  I can do each little 30 second part but now Juwan is making me add a song or two together.  Wait one minute of straight dancing?  After a full 60 seconds I find that I’m winded.  Wait add another 30 second piece?  After 90 seconds of this routine, my heart is beating out of my chest and I collapse to the floor at the end of each round.  How do these dancers to do this?  Juwan tells me to kick my cardio up a gear – which I take in stride.  My birthday was February 2nd and I can honestly say that my cardio has been on a sliding scale the past week as my alcohol consumption has increased.  I mean you only turn 42, once right?  Ok ok… back to Orange Theory.  

Day 13

Here we go on putting the entire routine together.  Luckily Juwan cuts me a break and tell me that we will just walk the routine a couple of times in its entirety until my body just goes into muscle memory so I don’t get scared.  I find that this is becoming easier.  I don’t have to think about the steps, my body is just doing it.  I’m doing so well that we start practicing with the music.  Okay, now I’m winded but it’s actually happening.  Great.  Now instead of skipping all the stunts, we are actually going to do them too.  Holy crap.  Each time we go through the 3 ½ minutes – I’m getting better.  Sure, there are mistakes, but Juwan just yells – KEEP GOING!  I just keep going, each round has less and less mistakes.  Hmmm…. This is actually coming together.  Still winded.  

Day 14

Wardrobe.  

Thankfully, the most awesome stylist in town Whitley Hamlin (Queen City Style), has agreed to help style me for the gala.  I love this because sometimes it can be hard for me to crank up the sophistication.  Her peeps at Neiman Marcus have stepped up to help and we start chatting about possibilities.  The fact that I don’t have to think about this piece is really saving me.  Juwan and I have been chatting about performance outfits for a while and have been coming up empty so taking this off my plate helps.  I decided to sit down at my computer and start ordering stuff online.  Let’s pray when it arrives, something speaks to us.  It’s also an added difficulty when you and your partner are trying to match.  Did I mention that I’m a 5’5 mom and he is like an 8-foot-tall ballet dancer?  Yeah… 

Day 15

It’s Saturday night and we have a birthday dinner organized with some friends uptown.  Juwan has a performance that night but has assured me that he and his fella will meet us out after.  I drag my crowd to Dandelion Market where we are WAAAAY too old to be.  I care zero.  I want to dance like I’m 22 and I’m not leaving until they turn on the lights.  Juwan shows up around 11 with his man and I’m so happy I can barely stand it.  We dance and dance and dance like no one is watching until my boyfriend (who dances ZERO), finally pulls me out my arm a little after 1.  I haven’t had a night like this in so long and I loved every minute of it.  Now, while we weren’t necessarily practicing our routine, this night of dancing took me to another level of being comfortable with Juwan.  It’s hard to dance in front of someone – it took a while for me to loosen up with him.  But we are becoming little dance partners – I may even say he is my favorite dance partner ever.  And this is exactly where I wanted to be with him at this point.

Day 16

I got the routine down.  Now it just needs flare.  It’s one thing to have the steps but it’s another to dance the steps as good as Juwan does it.  We may have spent 20 minutes having him walk me through how to get my ass to “twerk”.  I still don’t have it.  I may have googled it when I got home that night and worked on it in my kitchen.  I’m less winded, it starting to not look like a mom from the suburbs.  I’m doing moves and Juwan is saying, “YES!  YES!  That’s it!”.  Confidence is building.  We are laughing, it’s working and I’m loving it.. minus the twerk.

Now I know rehearsing in an empty studio is one thing, on stage is another.  Next week he stops allowing me to watch myself in the mirror and will start picking at every little thing.  He’s going to eat my “twerk” alive.  I will continue to practice in my kitchen.  Also, my kids are starting to learn my routine.  Grant may have it better than I do.  Where is Isabella when I need her???

More performance outfits arrive.  One is baller – and I think we may have found it.  Now time to accessorize.  How is this performance just 2 weeks away.

And vote already.  I’m twerking and that’s got to be worth something right?

Erin’s DWTS Blog #1

Erin’s DWTS Blog #2

Event site: gala.charlotteballet.org

DWTS Blog #2: Why did I sign up for this again?

/in , /by

Written by Erin Santos, ISF Executive Director & President

Let’s back up a minute.  I realized as a talked to different people about Charlotte Ballet’s Dancing With the Stars that people had lots of questions for me about it.  Maybe I wasn’t doing a good job about communicating what I’m doing and why I’m doing it.  In it’s 7th year, the Charlotte Ballet asks 6 leaders from the Charlotte community to participate in their annual event that raises money for both the Charlotte Ballet and the charity of the dancers choice.  You are paired with a member of the company and have 8 weeks to practice a routine.  Then on March 2nd you perform in front a sold-out crowd at the Knight Theater, the one caveat is in these 8 weeks, you are asked to raise funds or “votes” with a suggested goal of $150,000.  The night of the performance, a fundraising champion is crowned as well as a judge’s choice for the best dance.  Seems easy enough, right?  Your selected charity receives 50% of your total funds raised – and for some dancers – it’s a shit ton of money.  As an Executive Director, receiving funds for ISF with no expense on the balance sheet for raising the money is your dream.  So here I am.

Right out of the gate, the dancing piece didn’t scare me.  Don’t get me wrong, that night I will shake like a leaf but honestly, I know I will get through it.  For me, the fundraising piece scares me.  The problem with selecting me as a contestant is that my JOB is asking people for money every day.  The rest of my competition probably isn’t out fundraising for a living so the ask from them may seem more rare – and therefore a little easier.  I have a very giving community of supporters from ISF who I’m hoping will see how important this is and vote for Juwan and I.  But what I’m also hoping will happen is the new visibility ISF receives in the community by being a part of the event.  People who may have never known of Isabella or what we are trying to accomplish for kids with cancer in Charlotte may come across our story and donate/vote to help us build this rare and solid tumor program at Levine.  I’m hoping new supporters and business will come out who want to support the Ballet but see the importance of what we are doing.   Crossing my fingers… also, everyone likes the underdog, right?

Right now I’m a big underdog and the competitive person inside me is struggling as I see my competition inching in on $150,000 raised.  (I’m just over $20,000) But people are telling me it’s early – so I’m counting on that.  So I continue to practice and check in occasionally on my funds raised – that isn’t moving.  But if you read about my journey and want to help – tell a neighbor, post it on your social media – email that buddy that owns a company that might make a big donation.  Anything you can do to help would be appreciated.  I’m honest with myself that I may not be the one with the fundraising trophy at the end, but I need to at least give it my all and would love any help you all can provide.  I just don’t want to embarrass myself. ☺  

Also, my competition has done a great job of filling the audience with their supporters.  I’m so grateful to those of you who are coming that night to watch.  Just seeing some familiar faces in the audience does wonders for me.  I have asked the Ballet to hold 20 tickets for me so I can get more familiar faces to the event.  These tickets are on hold until January 31st.  The event is sold out so if you want them – you have a couple of days to get them.   

Instructions on how to purchase from the held back tickets

1.    Please visit the website here and make a donation of at least $350 to equal one Gold ticket, $700 for 2 Gold tickets, etc. Once the transaction is received it will be recoded from donation to tickets.

2.    Within the guest names field please indicate “Gold Ticket Purchase” and the names of the guests using the tickets.

Now on to the dancing… or at least what kind of looks like dancing.

DAY 6

It’s freezing out.  It’s Sunday and it took everything I could do to get myself out of a warm house and head uptown.  Juwan seems stressed.  This guy dances in the ballet, goes to school, teaches classes, deals with my uncoordinated ass, has a new boyfriend and gave up drinking and social media recently.  I’ve been all over him lately about sending me the music so I can practice at home but I haven’t received it.  I can tell I’m annoying him.   Looking back, I should have been more patient because Juwan’s life makes mine look like I do nothing all week.  We are kind of snippy with each other and there is a little tension.  He takes a seat on the ground and tells me to practice my steps while he works on getting me the music.  I take a walk and realize that I’m probably pushing him because I’m getting nervous.  I also have personal stuff going on that weekend that I’m dealing with and I can feel myself swallowing the lump in my throat before I walk back in the studio.  I am not going to cry because if I do – it really has nothing to do with the music – it’s everything else that weekend.  I’m able to hold it in.  “I’m being a bitch aren’t I?” Juwan says as he comes over to me.  “Yes.  Yes, you are.”  I tell him.  I realize that we are both just dealing with shit that really has nothing to do with dancing.  A mental breakdown is brewing for us both.  We decide to lie down on the floor next to each other and talk nothing about dancing, music or the crap that is really just below the surface for both of us, and I’m okay with this.  Sometimes you just have these days.  I receive the music in my inbox the next morning at 7 am.  I love him.

DAY 7

Let’s start dancing again.  We are working on one of my favorite parts.  Juwan’s whole demeanor has changed and I can tell that both of us had a breakthrough of some kind since we saw each other last.  I’m hitting the steps.  I’m moving easier.  I’m not nervous anymore.  He asks how comfortable I am doing a stunt.  Hmmm… He shows me online and I think – okay I can do that.  He brings in a spotter.  Wait – why do I need a spotter?  Just trust me, he assures me – so I do.  And just like that, he flips me backward and I land it perfectly.  Confidence level – 10.  Okay, try it again but no spotter.  5, 6, 7, 8 and FLIP!  I land hard on the balls of my feet, in heels on the hardwood floor.  Both of my feet go numb.  I sit down instantly and he has me put my feet up against the wall.  They are tingling and I feel like I might pass out.  I look at the bottom of my feet and they are already blue.  I thought I had fractured both of my feet.  I take off my heels and slip my Uggs on – I’m done for the day.  I go home that night and watch my feet bruise from the entire sole of both feet, up the sides.  By the morning, the bruises are black.   Welcome to dancing.

DAY 8

Screw wearing heels.  This lady is back in sneakers.  The feet are tingly and a little numb but they are healing.  I’m not going to practice the flip again for a while but I assure Juwan that I’m going to master it.  I also let him know that the other trick I asked him to take out that took the skin off my ankles and gave me the massive knee bruise is back on.  If I’m going to do this thing – I’m going all the way.  My body will heal.  Juwan is in great spirits and it warms my heart to see him laughing and smiling.  He seems less stressed and I feel what little maternal instincts I have bubbling to the surface, wanting to take care of him but also knowing that maybe just by being a little better today in practice could help a little.  I’m hitting steps, I’m sliding on the ground (doing the move that once rattled me), and I’m hitting the mark.  “Look at you girl!  Knowing these moves!”  I shrug him off but I feel good knowing I’m making a little bit of progress.  We are a little ahead of schedule and I know I have 5 weeks to clean it all up.  I think I’m going to pull this thing out… if my body and my mind can hold it together.  Oh, and I’m starting to have fun.  Look at me.  Who knew?

Erin’s DWTS Blog #1

Event site: gala.charlotteballet.org

Isabella Santos Foundation Sees Significant Results in 2018

/in , , /by

CHARLOTTE, N.C. – Jan. 22, 2019 – This past year, the Isabella Santos Foundation (ISF) continued to make great strides in the local and national pediatric cancer community.

The most significant development was the creation of a leading-edge rare pediatric cancer treatment room at Atrium Health’s Levine Children’s Hospital. This is one of the leading MIBG Therapy Suites in the nation and is slated to change the landscape of local cancer care. ISF completed its $1 million commitment to build the treatment room which will be used to treat children with neuroblastoma and in advanced clinical trials to test new products on different types of cancers. Construction began mid-2018 and was completed in eight months. The first patient was successfully treated there in December. More information is available at http://bit.ly/MIBGTherapy.

Among the $672,000 that the Isabella Santos Foundation donated to their mission of fighting pediatric cancer, $600,000 was given to Atrium Health’s Levine Children’s Hospital and $30,000 went to The Genomics Department at Nationwide Children’s Hospital to help fund the Neuroblastoma Killer Cell Trial. Additional funds were supplied to local Charlotte organizations that support kids and families fighting pediatric cancer.

Another significant mark ISF made, was partnering with Community Blood Center of the Carolinas to open CBCC’s first blood center in South Charlotte. Named in Isabella’s honor, the Isabella Santos Center is a state-of-the art blood center located in Ballantyne.

In addition, Erin Santos, executive director of and president of ISF, was named the Housing Opportunity Foundation’s “2018 Humanitarian of the Year” and was recognized among The Charlotte Observer’s editorial board among those who “made Charlotte better in 2018.”

This year, ISF is committed to raising $5 million to fund the ISF Rare and Solid Tumor Program at Levine Children’s Hospital. This breakthrough program is designed to research and treat a wide range of deadly pediatric cancers, and will allow the hospital to expand their clinical trials and recruit a national expert in rare and solid tumors.

“We are extremely proud of our results and the impact we made on the pediatric cancer community in 2018,” said Santos. “We are very grateful for our tremendous base of volunteers, supporters, partners and staff for helping us achieve these incredible accomplishments and improve the lives of countless childhood cancer patients.”

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for 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 is committed to improving rare pediatric cancer treatment options in an effort to increase the survival rate of kids with cancer so they can live their dreams. ISF has donated over $3 million to date to expand the scope of pediatric cancer research and treatment, and to fill various needs surrounding childhood cancers.

For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation), Twitter (www.twitter.com/TheISFoundation) and LinkedIn (https://www.linkedin.com/company/isabella-santos-foundation/)

#  #  #

CONTACT:

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

jenni@walkerprgroup.com

Revealed! Here are the 2019 honorees in CBJ’s Women in Business awards program

/in , /by

Originally published on Charlotte Business Journal

For more than 20 years, the Charlotte Business Journal has recognized outstanding local businesswomen through the Women in Business Achievement Awards program — and the time has come to reveal our 2019 honorees.

This signature awards program recognizes 25 female business leaders in the Charlotte region who’ve made significant contributions to their companies, industries and communities over the previous year.

A Lifetime Achievement Award honoree will be announced in the days to come. She will be someone who’s made an impact over the course of a distinguished career, joining past recipients such as Susan DeVore of Premier Inc. (NASDAQ: PINC) and Cathy Bessant of Bank of America Corp. (NYSE: BAC).

CBJ will honor the members of the 2019 class at an awards event Feb. 25. As was the case last year, that program will take place in tandem with our Bizwomen Mentoring Monday event, which offers brief, one-on-one coaching sessions and networking opportunities. A cocktail hour, seated dinner and awards presentation will follow.

Each honoree has been asked to share a yearbook photo of herself and to consider this question: “What were you thinking at that moment when the photo was taken, and what advice would you give her today?” Those responses will be part of the program.

The honorees also will be profiled in a CBJ special report Feb. 15, with additional coverage and photos to come after the awards presentation.

Check out last year’s special section here to learn more about the program, and check out the photo gallery below for scenes from the 2018 event.

Congratulations to the 2019 winners:

  • Zelleka Biermann, city of Charlotte
  • Sarah Taylor Brigham, Sycamore Brewing
  • Tina Craft, Albemarle Corp.
  • Ruby DuBay, Blythe Construction
  • Caroline Dudley, Accenture
  • Carla Eustache, Style Perfect Events
  • Jada Grandy-Mock, Fifth Third Bank
  • Kim Henderson, Novant Health
  • Diane Honeycutt, Team Honeycutt/Allen Tate Realtors and Cabarrus County commissioner
  • Pat Jones, Carowinds
  • Elizabeth Jordan, Deloitte
  • Kathleen Kaney, Atrium Health
  • Cathie McDonald, OrthoCarolina
  • Rima Mehta, PNC Bank
  • Kelly Necessary, Dixon Hughes Goodman
  • Monika Nessbach, Designbar
  • Diana Palecek, Fox Rothschild
  • Scarlet Powell, Unified Technology Systems
  • Kim Rock, EY
  • Jane Rosaasen, Daimler Trucks North America
  • Erin Santos, Isabella Santos Foundation
  • Christine Steiner, Life’s Food
  • Stephanie Titus, Bank of America Merrill Lynch
  • Marcie Williams, RKW Residential
  • Jane Wu, Panorama Holdings

Charlotte’s unsung heroes: They made Charlotte better in 2018 (Part 2)

/in , /by

Originally published by The Charlotte Observer Editorial Board

Erin Santos with her daughter, Isabella. Santos has responded to Isabella’s death by helping others in similar situations. ANGELO MERENDINO

Each year, the Observer editorial board searches for heroes among us who make our city and region better. This year, we’ve found people who’ve made the most of a second chance, helped dads connect with children, helped students explore and forever changed treatment of cancer in Charlotte. (We published our first two honorees yesterday.) To them, and to all who make our community better, we say thank you!

Reimagining pediatric cancer care in Charlotte

Charlotte’s Isabella Santos was 2 years old when she was diagnosed in 2007 with neuroblastoma, a rare cancer that mostly afflicts very young children.

Her parents couldn’t get the treatment they needed for her in Charlotte. So they took Isabella to Sloan Kettering in New York and to Children’s Hospital of Philadelphia to try to save her life.

 

Even as they cared for their daughter, they quickly created the Isabella Santos Foundation to raise money to fund research at Sloan Kettering for a cure. At first it wasn’t much – they raised $7,000 at their first 5K race in Ballantyne.

But Isabella’s mother, Erin Santos, quit her job at Lending Tree to work on the foundation full time, and she changed the focus. She had had the resources to take Isabella around the country, but she knew other families didn’t, with deadly results. They needed world-class treatment in Charlotte.

So Erin stopped sending money elsewhere and instead worked with Levine Children’s Hospital to treat neuroblastoma here. The foundation raised $1 million last year and $1.4 million this year. It used part of that money to partner with Levine to build an MIBG treatment room, one of fewer than 20 in the country and arguably the best.

Erin Santos and the Isabella Santos Foundation have forever changed treatment of neuroblastoma in Charlotte. But they’re not content to stop there. They have pledged to raise $5 million over five years to have Levine build a rare and solid tumor program that would treat about 15 different rare cancers. It would be the only one of its kind in the country.

Isabella Santos died in 2012 at the age of 7. But her life, through the work of her mother Erin, will benefit others for generations.