1st Annual Isabella Santos Scholarship Winner

We are thrilled to announce our 1st Annual Isabella Santos Scholarship Winner, Leah Shelton.  Leah was one of many who submitted an application for a $1,000 community service scholarship.  Leah is graduating from Marvin Ridge High School and will be attending Vanderbilt University in the fall.  It’s pretty amazing to think that Leah was in 8th grade when Isabella passed away… and look how Isabella’s legacy has carried on.

Isabella Santos Scholarship Application, Leah Shelton

Karen Murphy (ISF Event & Volunteer Director) and Leah Shelton

Hand in hand, Destinee and I step out of the shiny black limousine. The repeated click of a camera signifies that her mother follows close behind, eager to capture Destinee’s rare display of affection. All eyes are on us as we walk the red carpet, and although Destinee looks stunning in her floral dress that I helped her choose several weeks prior, she keeps her head down. I speak some words of encouragement, not expecting a reply from my nonverbal honoree. But then, something so unexpected happens that I pause for a minute: she squeezes my hand. Small moments like these remind me why I engage in community service. It is so easy to forget the real reason for volunteering when so many are caught up in graduation requirements, college applications, and resume-building. I volunteer because I have abundant joy that cannot be contained to me alone. I want others to share in this joy, and I struggle knowing that there are so many people in the world that do not have enough reasons to be happy. Being a Youth Mentor for the Sandbox, an organization that locks arms with families of children with cancer or another life-altering illness, provided me the perfect opportunity to share my positive energy. AlthoughDestinee’s illness is incurable, helping her to forget about her troubles, even if just for one night during the Evening of Believing Prom, was one small way that I could help bring a little more light into the world. To most people in the “Marvin Bubble,” issues like cancer seem so far removed from reality that they are often treated as irrelevant. I am an optimist, downright Pollyanna at times, and I often fall victim to the superficial sense of security and insistently sanguine perspective that exists in our little bubble. However, volunteerism helps to keep me grounded, humble, and connected to issues like cancer that are of such global significance. My purpose in aiding an organization that works to combat cancer is not to minimize my positive attitude, but rather to help others in a way that spreads this positivity.

  • Varsity Dance Team (grades 9-12)
  • Student Council (grades 9-12): Sophomore Class Vice President, Junior Class President
  • Spanish National Honor Society (grades 10-12): Vice President
  • National Honor Society (grades 11-12)
  • Junior Art League of Waxhaw (grades 9-12): Create community art pieces, volunteer at community art events, and learn about new artistic media and techniques from local artists.
  • Youth Mentor for the Sandbox (grades 11-12): Support families of children with cancer or another life-altering illness. Work to meet a fundraising goal of $500, represent the Sandbox in community events, and serve as an advocate for honoree as they prepare and participate in An Evening of Believing Prom.
  • Domestic Violence Advocacy (grades 11-12): Initiated a campaign to spread awareness for teen dating violence at Marvin Ridge. Coordinated with Turning Point to put on a presentation for ninth grade health classes. Volunteer at Second Chance Boutique. Working to continue campaign this May.
  • Assistant Coach for Middle School Dance Team (grade 12)
  • Assistant Dance Teacher at the Dance District of NC (grade 12)
  • Isabella Santos 5K Run for Kid’s Cancer (grades 7-12)
  • Progressive Movement Arts Centre Senior Company Team (grades 9-10)
  • The Dance District of NC (grades 11-12)
  • Queen City Audio, Video and Appliances Community Heroes Award (grade 12)
  • Varsity Dance Team Heart of a Maverick Award (grade 12)
  • Universal Dance Association All-American Dancer (grades 11-12)
  • 2017 National Merit Commendation
  • Outstanding Achievement Award for IB Spanish (grade 11)
  • Varsity Dance Team Most Improved Award (grade 9)
  • Academic Excellence Award (grades 9-12)

I plan to attend Vanderbilt University in the fall, and I expect to major in either chemistry or biochemistry. While I am still unsure where my academic journey will lead me in life, I know that I want to use the knowledge I gain to make the world a better place. Whether that is by discovering a cure for cancer or merely making a patient smile, I hope to find ways to spread as much joy as possible.  I have been extensively involved with a variety of community service organizations throughout middle and high school, and I plan to continue this involvement as I transition to college and adulthood. Teen dating violence is one cause that is particularly important to me, and I have spent the last several years spreading awareness and volunteering for a domestic abuse advocacy organization. As I begin a new chapter of my life next year, I hope to continue to empower young people to have healthier relationships. There is no way to “solve” domestic violence; however, by educating people about the warning signs, the prevalence and severity of this issue can be drastically reduced. In college, where many sexual assault cases go completely unnoticed, I hope to be the voice of those who are too afraid to speak, advocating for everyone’s fundamental right to love and respect. The best way to encourage others to have a positive impact on their community is to lead by example. Positivity is contagious, and if I continue to show those around me that service is a fun and rewarding experience that fosters inclusion, expands one’s global view, and provides an opportunity to apply academic learning to genuine human needs, I believe that they will be inspired to do the same.

The most critical way by which ISF can inspire teens to make Isabella’s dream a lifelong passion is to encourage them to create personal connections with cancer patients. I remember cheering on Isabella while volunteering at the Isabella Santos 5K with the Marvin Ridge Dance Team. She had just dyed her hair red so she could look like Ariel, her favorite princess (and mine!) Isabella was not able to attend the subsequent races, but the stories I heard of the profound effect she had on those around her impassioned me to promote this worthy cause. One of the most eye-opening experiences of my teenage years was serving as a youth mentor for the Sandbox. Earning the opportunity to form such a strong relationship with a child battling a chronic illness increased my awareness about those who face adversity every day, and this motivated me to continue to make a difference. In this way, these children became more than just statistics or sob stories in a magazine. They became real people, inspiring characters, who astound me every day with their incredible strength. ISF should create opportunities for youth to hear personal stories and interact directly with kids and families that are impacted by cancer. The presence of the Santos family in the Marvin Ridge community has always kept this cause in the forefront of my mind, so I believe that others will feel the same way if they can have a similar experience. Teens are always looking for opportunities to volunteer that are accessible and fit into their busy lives, therefore ISF should look for ways to tie service and fundraising into things that teens are already doing like sports teams and clubs.

We Are Hiring: Donor Database Administrator (Part Time)

The Isabella Santos Foundation, a 501c3, was established in honor of Isabella Santos, who fought a long and courageous battle with Neuroblastoma. Isabella passed away at the young age of 7, and her foundation has continued her mission of fighting for a world with no more cancer.

ISF has grown rapidly over the past several years and is currently looking for a Charlotte based, part time donor database administrator.

Please apply through our LinkedIn Jobs posting or send an email to erin@isabellasantosfoundation.org

DATABASE MANAGEMENT/MAINTENANCE 

  1. Manage data entry and record management, ensuring accuracy, consistency and timeliness
  2. Manage and enforce gift acknowledgement processes, ensuring timely and accurate recognition of all gifts
  3. Make appropriate and timely recommendations on database expansion and/or enhancements to ensure the most effective and efficient use of the system
  4. Respond to donor inquiries concerning gift history, receipts, and other documentation
  5. Provide routine maintenance and cleanup of donor database
  6. Set up and maintain event sites and donations
  7. Suggest, maintain and implement proper security protocols for database and donor information

DATABASE REPORTING AND ANALYSIS 

  1. Provide regular and ad hoc reporting to development and finance departments
  2. Provides support to staff by assisting with creation of mailing/donor lists and other projects
  3. Collaborate with other staff members to analyze fundraising trends/results and provide related analysis
  4. Perform donor/prospect research and provide recommendations for enhanced donor engagement

TRAINING and SUPERVISION 

  1. Train development staff on usage of database and donor stewardship processes
  2. Supervise data volunteers/interns

OTHER DUTIES AS NEEDED 

  1. Working knowledge of finance and reporting
  2. Support other agency campaigns and projects
  3. Participate, lead (when necessary), and attend community and agency-appropriate meetings

Other duties as assigned

Knowledge of etapestry preferred.

Salary range approximately $20-$25k

Charlotte area applicants only.

Please apply through our LinkedIn Jobs posting or send an email to erin@isabellasantosfoundation.org

Isabella’s Cooking Show

Written by Connie Stewart, Isabella’s Grandma

Let me start off by saying that my mom is an amazing baker.  She is known for her German chocolate cake, coconut cream pie and brownies with homemade icing.  My daughter Amy is known for her many varieties of cookies and creative cakes and I dabble in baking a bit with cake pops and strawberry cakes.  If you know Erin, you know that she was more than happy to step aside and pass this trait on to Isabella.  She didn’t like the mess it created and would much rather pull out a roll of cookie dough from the refrigerator and have warm cookies in 15 minutes with no mess.  Erin would get out the mixer, point to the flour and sugar and say “There you go”.  But Isabella loved to bake and I was very happy to help her.  And I do mean, help her.  She was always in charge and I was the one getting the eggs, flour and various ingredients.  She would handle everything from there.

As far back as I can remember, she would pull up a little step stool and put on an apron and do whatever she could to bake something.  One christmas when she was maybe 5 years old, we got her an apron with her name embroidered on it and a baking set with measuring cups, measuring spoons and bowls.  The was so excited to break it open and begin cooking.  I think she actually fixed scrambled eggs for breakfast for us that morning with a little instruction from her dad.

But her favorite things to make were cookies, cupcakes and cakes.  One Easter weekend, Isabella and I spent the entire afternoon baking, icing and decorating a bunny cake complete with jelly beans and sprinkles.  She was so proud of it.  Later that night, her Uncle Nathan came over and when she offered him a piece he took a big piece of the bunny butt.  She couldn’t stop giggling about that and her infectious laugh made us all laugh too.

I think my favorite memory of her cooking skills came in 2011 when all of us were together for an ISF Face.  Another one of Isabella’s favorite things was spending time with her cousins.  Amy’s three girls were close to her age and she love just running with them and giggling.  One this particular day, the four of them spent hours planning a cooking show.  Actually, it was not just a cooking show it was “The Isabella Cooking Show”.  They decided to hold the show in the garage on the pink stage that her dad had built.  They designed a sign, wrote out a menu, and set up the stage and chairs for the audience complete with a microphone.  Everyone on stage had to wear a cupcake t-shirt and the color theme was, of course, pink.  They made blueberry muffins and explained the process which took an entire two minutes.  Isabella took center stage and stirred the batter over and over and over.  They had not quite planned what to do next so they passed around a microphone and took questions from the audience ranging from “How long do these muffins bake” to “Can Sophia help you?” which met with a resounding “NO!”.

One thing about Isabella and her baking was that she never wanted to eat the things that she made.  I don’t know if she didn’t care of the things that she baked or that she knew something I didn’t about what went into it.  Mmmmm… Either way, I loved the time that we shared doing this.  It was a time for the two of us to just talk and laugh.  She would tell me about things that went on at school, her boyfriend, Joey, or how her brother and sister were annoying her.  I would tell her about her cousins or ask her about some of the places she had been all while we continued mixing and measuring.  I know that she didn’t get it at the time, but for me, this was perfect.  It was my chance to share something my mom, my daughters and now my granddaughter enjoyed.

I know this year the Easter Bunny brought Sophia some baking supplies.  Hopefully I will get some ‘banking time’ with her too.

 

True Definition of a Mother

She was amazing. We received the worst news of our life and she didn’t flinch. She took a leave of absence from work and moved her life into our home. She did all the unglamorous tasks. She changed diapers, she did dishes, she gave baths, she made dinner, she did laundry, and she stepped in when I had to step out. She also lived with Stuart and I during the most stressful time of our life. That task in itself was worthy of a medal.

She put her life on hold. She didn’t get paid. She CANCELED her own wedding, due to a relapse of Isabella’s.

She traveled with me to New York. She kept my mind busy while I had to wait for scan results. She raised Grant. She raised Sophia. She raised me.

She disciplined Isabella, which was a hard thing to do. She kept her in line and knew when to be her Grandma and when to be her Mom. She kept me in line and knew when to be my Mom and when to be my friend. No matter what Stuart and I were going through, she had my back. She would yell at him when I couldn’t and try to fix us when we were unfixable.

When Isabella would relapse, she would be my first call. She would talk me off a ledge and help me make arrangements. I would go to bed that night and wake up to a doorbell ring. There she would be standing on my front porch. She would drive through the night 12 hours to be there. I would break down when I saw her because she always knew what to do without asking.

She was as close as you could be without being right there. Which is a hard thing to explain. She wasn’t making the decisions but she was implementing them. She was giving medicine and catching vomit in buckets. She was rubbing backs and changing bandages, but she was never in the spotlight. She never wanted to be. She would just tell me over and over how we were making the right decisions and that we were strong and how proud she was of me but honestly she was right there along side us.

She took the lead on dangerous radiation treatments when Isabella relapsed in the brain. I was pregnant with Sophia and it was too dangerous for me to be around that amount of toxic radiation. So she stepped in and slept behind a lead wall, allowing her own body to be radiated so that mine wasn’t affected.

She was Isabella’s second Mom and Isabella knew that Grandma would take care of her. Isabella adored her and often times would want to be with her over me because they just had this connection. It wasn’t just Isabella either. She raised Grant. And if you see them together today, it’s a bond that is unlike anything you have ever seen. The love he has for her is close to that of a Mother and it should be. She was his Mom.

She was all I had when I felt like I had nothing. I could tell her anything – no matter how bad it was. Some days I was ready for Isabella to die and she is the only one I could say that to. She would hold me up when I was ready to fall and held my hand through everything. She is the only person that I allow to give me honest feedback in my life because she is the only person in my life that knows the true me. You also never realize how much you want your Mom to crawl in bed with you when you are sobbing until she does it. She never said anything. She just got in bed and let me cry on her.

And in the last week of Isabella’s life, it was painful for me to watch Isabella shut her out. No one was allowed to be with her except Stuart and I in the end. My mom had been there from the first day to that moment and Isabella put up a wall with her. My mom was forced to lay with her only when she was asleep. But she took every single minute she could. She once again took on the most unglamorous tasks like cooking corn casserole when Isabella craved it, only to watch her not eat it. “It’s okay,” she would say to me. “I’ll do anything she wants.” We even made her drive to get Grant the morning Isabella died. We should be shot for what we put her through.

I regret all the horrible things we made her do during those years. But if you ask her, it was the best gift we could have given her. It’s hard to put into words what people like her do for your life. Sometimes you are just given someone in your life that is a true blessing and you can’t imagine your life without them. I seem to shut out everyone in my life these days. But my Mom is the one person that will never see my wall. She is the person I strive to be in my life and what I get from her is the definition of a Mother’s love. I will never fully understand how she was able to give so much to us, or why she did it. But as I grow as a Mom, I start to see that I would do the exact same thing she did because the love you feel for your kids makes you do things you never thought were possible.

My Mom is the best person I have in my life. I love her for what she did for me, for Isabella and my family. She is the true definition of a Mother. I can only hope to be half the woman she is one day.

ISF Funds The SADA Drug Delivery Platform with Memorial Sloan Kettering Cancer Center

Erin and Sophia Santos, Dr. Cheung & the MSKCC Neuroblastoma team

Memorial Sloan Kettering Cancer Center in NYC is one of the top Neuroblastoma research facilities in the country.   Dr. Cheung, head of the neuroblastoma program, and his team are doing remarkable things. In December of 2016, Isabella Santos Foundation gave $202,000 to Dr. Cheung’s team to help push a research program, The SADA drug delivery platform, forward.  We thank you for allowing us to choose these programs that will help move the needle forward on something we feel is really important and a step in the right direction for research and treatment.

One of the difficulties with previous cancer therapeutics has been the inability to control off-target effects.  Children may have the possibility to beat neuroblastoma, but then die from unintended long term side-effects caused from the traditional chemotherapies that affect all parts of the body.  The SADA drug delivery platform was created to control drug delivery with such precision that toxicity only occurs where the drug is picked up by tumor cells, and not to normal bone marrow, the immune system, kidney or other vital organs.  This  novel technology has the potential to completely change the way we deliver strong medicines needed for children, where off-target effects could be devastating with long term consequences.

Isabella Santos Foundation is funding the construction of the proteins that target the tumor cells, and the testing of these proteins in the fight against neuroblastoma.  If successful, this will not only make treatments safer and more effective for neuroblastoma, but can be transferred to use in all cancers.  

Isabella was treated at Memorial Sloan Kettering and we have seen the remarkable programs Dr. Cheung and his team have worked on.  Isabella ran out of treatment options.  She died because her cancer has very little funding.  We continue to work to change that.

Dr. Cheung