Isabella Santos Foundation Board of Directors Visits Levine Children’s Hospital

In June our ISF Board of Directors held their monthly meeting at Levine Children’s. Before we got down to business we headed upstairs to the Isabella Santos Foundation MIBG Therapy Suite on the 11th floor. We get chills every time we step foot in it. And last night we saw our board members feel the same chills. It’s real, to be able to see and touch the impact your dollars have on kids with cancer is immeasurable. 

There is so much more to be done and we couldn’t have a better team standing behind us. Each individual brings amazing talent and experience in serving our organization and impacting our local pediatric cancer community. Their dedication personally and through their respective companies is one of the reasons why Charlotte is the best city with the most giving community.

ISF Board of Directors:

– Neil Aldridge, Global Channel Partnerships, Gold Group Enterprises
– Meredith Dean, Seacrest Studios Program Coordinator at Levine Children’s Hospital & Founder at the Dean’s List
– Matt DuBois, Owner, Centurion Entertainment
– Suzie Ford, Owner, NoDa Brewing Company
– Eric Frick, Attorney, Parker Poe (Joining the board in July, 2019)
– Charlotte Guice, Owner, Charlotte Guice Designs, LLC.
– Jay Levell, Partner, White Point Partners
-Jacob Lewison, Marketing Manager, QCarolina Restaurants, LLC
– Jonathan McFadden, Content Strategist/CopyWriter, Lending Tree
– Tim Miner, Co-Founder, Charlotte is Creative, Co-Host Creative Mornings
– Barbara Morgan, Owner, Brixx Pizza
– Jennifer Pope, Pediatric Hematology and Oncology MD, Levine Children’s Hospital
– Blair Primis, Senior Vice President, Marketing & Talent Management, OrthoCarolina
– Karen Suddreth, Human Resources Administrator, Culp Elliott & Carpenter, PLLC
– Sandra Szoke, Partner, Impact Marketing Partners
– Jacob Virgil, Senior Associate & SEO Lead, Red Ventures.
– Matt Yarmey, Owner, Pure Intentions Coffee.

Room at Levine Children’s Hospital helps children battling cancer receive unique treatment (WSOCTV)

CHARLOTTE, N.C. – There is a unique radiation treatment that is helping children battle rare cancers with minimal side effects, but it requires a specialized lead-lined room to protect families and caregivers from that radiation.

There are only 20 rooms in the U.S., and one of them just opened in Charlotte at Levine Children’s Hospital thanks to a $1 million grant from the Isabella Santos Foundation.

For the full article go here.

2019 Isabella Santos Foundation Scholarship Recipient

We are beyond thrilled to announce our this year’s Isabella Santos Scholarship Recipient, John Ford. John  was one of many who submitted an application for a $1,000 community service scholarship. John is graduating from Marvin Ridge High School next Monday and will be attending University of Georgia in the fall. John is on the youth board for Kids v. Cancer and has participated in lobby days, Curefest and Light the Night on behalf of Kids v. Cancer.  Please help us in congratulating John on this outstanding award and his entry to UGA.

By John Ford

My life is rich with volunteer experiences and I am not talking about my service to others, I am talking about those who have volunteered to serve me. As a young child, I was diagnosed with cancer. That diagnosis changed my life. My treatment began when I was 4 years old and continued until I was 9 years old. During that time, many people helped my mother and me as we navigated the harrowing road of pediatric cancer. Just a few of the volunteers that I had the privilege of knowing were the child life specialists who would spend their time playing games and doing crafts with me to ease the pain of my treatment, the therapy dogs and their owners who would visit to help me during those difficult days, the men and women of HomeTown Heroes who raised money to help us with medical bills and who took the children to a local Walmart on Christmas Eve to pick out whatever toys we wanted, and the volunteers at Make-A-Wish who granted my wish for a playset with a clubhouse, pirate flag and spyglass. All of these people touched my life in such profound ways that it instilled in me the desire to do the same for others.

As I grew older and discovered my passions, I realized that I wanted to devote my time to helping other children with cancer. I became a Youth Board member at Kids v. Cancer and have had the privilege of working with Kids v. Cancer to lobby the U.S. Congress for the passage of the Race for Children Act as well as thank them for the passage of the Star Act. I have also represented Kids v. Cancer at Curefest and a Night of Golden Lights at the White House. That was a very moving and humbling experience. I saw childhood cancer survivors, parents who had lost a child to cancer, and children that were battling cancer at the time. I realized how lucky I was to be standing among them and vowed to always strive to use my time and my talents to serve others.

Leading the lobbying team on behalf of Kids v. Cancer was the most meaningful service activity I have done so far in my life. Never before have I felt like I had more of an impact on the world than when I was able to cross my own cancer story with my passion for public policy to help lobby for legislation that has a direct effect on children suffering from cancer. At September’s lobby day, I discussed with the founder of Kids v Cancer, Nancy Goodman, an idea I had researched to add an option on tax returns to donate a portion of state tax refunds to pediatric cancer research. I suggested that we spearhead the initiative in North Carolina. She thought the idea was worth pursuing, not through Kids v Cancer, which should remain focused on passing legislation at the federal level, but put me in contact with people who can help me make it come to life. My next step will be to form the first state-level legislative initiative to pass pediatric cancer research legislation. Ms. Goodman’s words of “No one is doing this – you have to!” has been a driving force in my mind. I have big dreams to help the pediatric cancer community but I know that I need to start small and I am hoping that this first step will launch the change that I hope to see.

I believe that the key to involving local teens in the fight against pediatric cancer is awareness and knowledge. Most teens have no idea what pediatric cancer is all about. They have all seen the smiling faces of the children on the St. Jude’s commercials but they do not comprehend the pain, suffering and horror that envelop those children as they battle for their lives. Compound that with the fact that most teens think that they, and those who are younger than they are, are invincible. They don’t think that their younger sibling or neighbor could ever get cancer. Because of this, I think it is so important to make teens aware of the truth behind pediatric cancer and also the lack of funding available to fight the battle against this disease. If teens in our community understood the truth, I believe that they would rally behind this cause and I know from my own experience with Kids v. Cancer, that once you are involved, it does become a lifelong passion. So how do we educate teens? I believe the best way to educate them is through personal contact and social media. A campaign to spread the word about the Isabella Santos Foundation’s mission in our schools and through social media would have a huge impact. If current high schools students were to be given the tools and opportunities at school to become involved, I believe that a large number would do so. Today’s teens are compassionate and want to help but they need to know about the needs and be made aware of the issues.

Pediatric cancer has residual effects. Because of my treatment I was unable to experience many of the staples of childhood that others tell me about. I could never ride a bike or play sports. It was difficult to see the other kids doing the things that I so longed to do and the experience of watching was truly a hardship in my life. Although, at the time I thought that this lack of experiences was nothing but a detriment to me and my life, I later found out that it was simply a factor of my life that made me who I am today. The constant watching from the sidelines as others played made me more observant and more detail oriented. The exclusion from sports and other activities made me more independent and carefree. The time spent in the hospital and at home, a period in which I spent a great deal of time with adults, made me more mature and gave me an almost inner spirit that has helped me better understand myself and balance my emotions. Most importantly, those experiences taught me that hardships are just that – hard – but that you can always overcome them and often times you are a better, more sophisticated, and prepared person. Because of my early experiences, I have spent a lot of time contemplating my future and whom I want to help. As an undergraduate, my goal is to double major in political science and international studies. I hope to finish my bachelors early in order to complete a master of public administration with a concentration in international policy. I then want to continue my education at law school. My reasons for pursuing these degrees is so that I can participate in advanced levels of research and gain the experience that, particularly in our current political climate, far too many politicians lack. Inexperience often impedes Congress’ ability to draft strong policy, reach across the aisle, and make good decisions as it relates to our country. The result is vague legislation that allows the executive and judicial branches to do the real legislative work. I hope that doing this research will give me the experience necessary to pursue a political career. Although I know that students often change their majors in college, my passion to serve other people will never change and I hope that one day I will be privileged enough to be in a position to help solve our country’s issues, especially the issue of the lack of funding for pediatric cancer research and treatment, through strong public policy

Calling All Members for Isabella’s Run Team

Endurance running program supports Isabella Santos Foundation

CHARLOTTE, N.C. – June 3, 2019 – The Isabella Santos Foundation (ISF) is recruiting members for its Isabella’s Run Team.

Open to all running levels, Isabella’s Run Team is an endurance running program for individuals to raise money for the Isabella Santos Foundation while training for races throughout the area. Starting in June, the team will train as one group in memory of Isabella Santos who passed away from Neuroblastoma at age seven. Each member will participate in one or more races that work best for their individual schedule and the entire group will also participate in the Isabella Santos Foundation 12th Annual 5K/10K for Kids Canceron Saturday, Sept. 28. 

Sponsored by Pure Barre Ballantyne, Isabella’s Run Team can accommodate any level of fitness and will provide training plans for the race of your choice, whether it be a 5K, marathon, or triathlon. The team will also provide weekend long runs and weekday run options; team swag; socials; camaraderie and motivation. All that’s required to join is a small donation of $50 to kick-start your fundraising page as you work towards a fundraising goal of at least $500. To sign up, visit https://isabellasantosfoundation.org/run-team/.

“The Isabella Run Team is a great way to train with a purpose and to raise money to help us build the best pediatric cancer hospital,” said Erin Santos, executive director and president of the Isabella Santos Foundation. “We appreciate the dedication and efforts of our Isabella Run Team members and sponsors who go above and beyond to support our mission and to impact our local pediatric cancer community.”

“The Run Team has grown into a group of athletes who enjoy training together while also supporting an amazing cause. Between getting up for early morning runs or having to keep pushing when you’re fatigued, training for a race is naturally challenging, but having Isabella’s name on my shirt gives me the motivation that I need to know that I can get through it,” said Brian Levy, head coach for Isabella’s Run Team. “Our goal for 2019 is to provide the resources to as many athletes as possible to help them prepare for their goal race, and also to continue supporting and raising awareness for the Isabella Santos Foundation so that we can move one step closer to beating this disease. Having Pure Barre join the team as a sponsor this year is very exciting; they will be a great partner to help us achieve our goals.”

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 https://isabellasantosfounda][=tion.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