Isabella Santos is a name that many people recognize in the Charlotte, North Carolina area. She has become synonymous with Neuroblastoma and other orphan cancers. Her parents started the Isabella Santos Foundation as a way of keeping her memory alive and help reach her wish of  ‘No More Cancer’.  As we celebrate 10 years of the foundation we thought it fitting to share with you the impact Isabella and ISF has made on the people who are a part of and support our growing organization. 

Children who are diagnosed with cancer are the smallest fighters, but they do not fight alone. Fighting alongside these tiny victims are the parents, siblings, relatives, neighbors, extended family, and friends. They are silent gladiators and resilient people who walk alongside these children and their immediate families. When a child is lost from cancer those supporters become the unseen victims and lose something, as well…. they lose what should have been.  It is these supporters we celebrate for helping us grow.

She should have been a runner.

“Volunteers don’t necessarily have the time; they just have the heart.” Elizabeth Andrew

Colleen on the left with Isabella

Today we introduce you to Colleen Hinsberg. She has known Isabella’s parents since their days at Lending Tree as co-workers. She has been part of the race since its conception and the Race Director for the past 4 years. It is her dedication, time, and passion that have allowed the race to grow and flourish like it has.  Colleen is working hard with her team to knock our 10th Anniversary Race out of the park.

So many amazing people are associated with The Isabella Santos Foundation. Some of these people have been there from the very beginning and others have been called to action once they met or learned about Isabella.

Tell us about your connection to The Isabella Santos Foundation and tell us how long you’ve known the Santos family?

Gosh it’s hard to believe that I have known them for over 13 years!  Stuart, Erin and I all worked together at Lending Tree. I knew them before they got married. I was one of the excited ones to learn that they were having a baby and then later that she was a girl. I worked with Stuart at 2 other jobs so I have been actively involved in the many events since Isabella was diagnosed.

Families faced with a seriously sick child meet the challenge in so many different ways. Erin and Stuart chose to not only fight for Isabella, but to create a foundation in her name that would bring awareness to Neuroblastoma and work to find a cure for all children.

Meghan and crew at the lemonade stand

When you first heard about Erin and Stuart’s idea for a Foundation what were your thoughts? 

I was thrilled. Before that point we had done a lot of things to raise money for Isabella’s treatment, a lot of which Stuart and Erin were giving to foundations that were supporting Neuroblastoma research. When they decided to fight the disease head on and form a foundation I knew they would do great things.  I had seen what they were accomplishing just within their network and how people were so willing to help. I knew that an official foundation would be huge.

Are you a part of the Isabella Santos Foundation today? If so, in what way are you involved?

I am on the Board of Directors for the Foundation as Race Director. This year (the 10th anniversary race) is going to be my 4th year in this role.  For all 10 years I have been actively involved with the race, helping coordinate all of the details that go into an event this large.

Volunteering is something that is done by people who clearly understand how important giving back is. Isabella seemed to understand that at such a young age. She inspired so many people to take action. Isabella made a lasting impression on so many people. Not only the people who knew her personally, but on countless strangers and readers of Erin’s Caring Bridge posts.

Colleen with Isabella, Stuart, and other volunteers at City Search

Can you share your fondest memories of her? 

My fondest memories of Isabella all wrap around how open and kind she was to my daughters. Through the years they would see her as we dropped food at the house, attended events, meetings and of course on race day. Isabella always was cute and polite and most importantly kind to these girls who were not part of her inner circle. Isabella somehow still seemed to know that Julia and Meghan were involved and 100% onboard with her mission to Beat Grow Live.   At the 2011 race, when it was pouring down rain and Isabella wanted to stop and dance in the rain, she grabbed my girls to be there with her.  That’s such a testament of who she was- Open, Kind and willing to stop and dance in the rain with whoever would join her.

How has Isabella impacted your life?

She hasn’t just impacted me; the support of the foundation is really a Hinsberg family effort.  Because of Isabella my family now has a cause. We now work hard to support something outside of our day-to-day lives. We take action- we run, we volunteer, we hold lemonade stands.  We speak in public- to classmates, to running groups and to local supporters. We see the satisfaction in paying things forward. We love purple and we look for dragonflies. We appreciate life and realize how precious it is. We learned to grieve, and we decided then to join the Santos Family in putting in lots of personal effort to find a cure for Childhood Cancer so no one else we know has to go through that kind of loss. 

Julia getting ready to raise money

How do you feel ISF’s call to action has made a difference over the last 10 years?

10 years ago the call to action was mostly a show of support.  A sense of “We are with you as you go through this horrible thing”. Even in the early years, Stuart and Erin decided that the shift need to be made to “this is bigger than us, we need to do more”.   We can all see what a difference that has made.  ISF is now one of the most well-known and respected charities in Charlotte.  The number of people who are supporting and even more importantly, passionate about the foundation is just amazing to see- not just here but across the county.  I am in awe of the amount of money we have been able to donate to Neuroblastoma research and other organizations that help children with pediatric cancer.  And year after year, when we ask our supporters are here to help. They know we are giving our all to make a difference and are happy to be a part of it.

Originally, the 5k for Kids Cancer run was a way of raising money to offset the financial burden that Isabella’s parents were faced with due to the overwhelming costs associated with saving Isabella’s life. It has turned into a major Charlotte event, adding a 10K and is raising hundreds of thousands of dollars.

Package pickup for the race

Please describe the changes in the 5K run over the past 10 years.

10 Years ago the race consisted of 175 people, most of us pushing strollers. We were there to show support in any way that we could.  Since then it has become more of a full morning event. We have the amazing silent auction and raffle – it’s a huge part of the day now with over 200 items to bid on.  The kids zone gets bigger and better each year- we have had to get creative on this one as so many of the kids that still support the foundation today are getting older so now you will see gravity turners and rock walls in addition to face painting and craft activities.   The race itself is now one of Charlotte’s best. We offer a 10K, 5K and a Kid’s 1- mile fun run.  We have cool finisher medals (wait until you see this years!!) and great food and music after the event.  We expect over 3500 people to be with us this year celebrating 10 years!

Looking back at where ISF began and where it is 10 years later, with its numerous arms that have developed since its conception, what are you most surprised about and proud of?

I am most surprised and proud of the way that Erin and Stuart have been able to share their personal story in the name of fighting cancer.  I would have never dreamed 6-7 years ago that Erin would be the CEO and voice of a major cancer fighting foundation.  Stuart was the talker.  Erin had written so beautifully and shared herself and Isabella so honestly of course people followed her.  When she started doing little speaking engagements I watched the crowd’s reaction and knew she had “it”. Not a lot of people can be both writers and speakers but Erin rocked it.  

Stuart, Erin and Grant each tell their story differently but effectively.  They could have buried their heads and simply just dealt with their pain and grief, instead they, as a family, embraced the fight and told their story so all of us would follow.  I remember as the events and speaking engagements got bigger thinking- wow they are really doing this, we as a foundation are really doing this! The pride I feel year after year seeing the impact are making is beyond measure.

Sending off purple balloons for Isabella

How has your outlook on life changed and what life lessons have you taken away from having lost such a special little girl?

I take time to dance in the rain. I cherish my friends and family knowing that life can be shorter than we want it to be. I am dedicated to a cause and I support people who have causes of their own.   I take action and push myself outside of my comfort zone. I am thankful that I have been a part of this journey.  It has changed my family and me more than I could ever say here on paper. 

For those of you who are not familiar with Neuroblastoma: Memorial Sloan-Kettering Cancer Center(MSKCC) defines Neuroblastoma as a rare cancer of the sympathetic nervous system – a nerve network that carries messages from the brain throughout the body.  It is usually found in young children and is the most common cancer among infants.  These solid tumors – which take the form of a lump or mass – may begin in nerve tissues in the neck, chest, abdomen, pelvis, or most commonly, in the adrenal gland. They may also spread to other areas of the body, including bone and bone marrow.  The cause of Neuroblastoma is unknown.   Learn more about Neuroblastoma.