ISF “Virtual” Sip-N-Shop

ISF Virtual Sip and Shop ImageLast year we held our 1st Annual Sip-N-Shop in Charlotte NC and it turned out to be a great shopping event for the community and a wonderful way for local businesses to give back. Each vendor generously donated an item to our Silent Auction and also donated a percentage of their proceeds during the event, back to ISF. This year we are trying something new. We know how busy our lives can get…especially now that the summer is in full swing, so we are doing a “VIRTUAL” Sip-N-Shop to allow these wonderful vendors that same ability to give back to a cause that they feel passionate about, while shoppers sip on their morning brew or nightly wine. ThisTuesday, June 28th, will mark the 4th anniversary of Isabella’s passing and we are coming up with multiple ways for our supporters to honor her. One way would be to SHOP this event and purchase from any of the following vendors during the time period of JUNE 25th- JULY 2nd to help honor her, help ISF and get some great things at the same time!

FIGHT CANCER. SHOP WITH US.

 

THANK YOU TO THESE AWESOME PARTICIPATING VENDORS:

(Click on their link to shop their specific event. A portion of sales during the dates above will come back to ISF)

Stacey Rex: PURE STELLA SKIN CARE

Charlene Gandhi: DOTERRA ESSENTIAL OILS

Robin Perrone: INDIA HICKS

Teeny Park: STELLA & DOT

Juliane Kilcoyne: BLOOMING EVENTS CHARLOTTE

Ashley Hall: HAND HIGH DESIGNS

Cynthia WoodINFANT MASSAGE CHARLOTTE

Cynthia Wood: RODAN AND FIELDS

Sarah Schnell: ARBONNE

Nicole Stefano: THIRTY-ONE

 

 

 

 

ISF $100,000 Grant Supports New Therapy For Pediatric Cancers

The Isabella Santos Foundation is proud to announce a $100,000 grant to support a pilot clinical trial for children diagnosed with high risk neuroblastoma through the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC). The funds come from the foundation’s first annual coffee for a cure in Charlotte, NC that raised $55,000 of the total amount, thanks to over 300 local women. Another$30,000 was given from All-in to Fight Cancer, and the remaining amount was given through general donations.

This trial brings a new drug, DFMO, earlier in treatment combined with antibody therapy. The drug is currently used in clinical trials to prevent relapse after high risk neuroblastoma treatment after standard treatment. The results of this work will be presented at the American Society of Pediatric Hematology Oncology Meeting on May 12, 2016. Currently still 12 percent of children will relapse during standard antibody therapy. This study will evaluate the safety of adding DFMO at this earlier time and evaluating the ability to decrease relapse rates.   This trial will be available at Levine Children’s Hospital in Charlotte NC, the home of the Isabella Santos Foundation as well as other sites and led by Helen DeVos Children’s Hospital in Grand Rapids, Mich.

“The Isabella Santos Foundation is excited to support new trials that directly impact children who are diagnosed with Neuroblastoma” said Erin Santos, President of the Isabella Santos Foundation. “Our daughter Isabella suffered 5 relapses of in her fight against this deadly disease so we understand the importance of specializing in this area. We are also proud to be a part of funding research that will directly impact our local Charlotte pediatric cancer community and are thankful for Dr. Sholler’s research that expands outside her hospital walls.”

Neuroblastoma is a cancer of the sympathetic nervous system which manifests when children are very young, with the average age at diagnosis being 18 months and remains a challenging pediatric cancer in need of new therapies. With this grant from the Isabella Santos Foundation, new hope is brought to many families.

“We are incredibly thankful for the support of the Isabella Santos Foundation which allows our research to pilot new ways to improve outcomes in children with high risk neuroblastoma,” said Dr. Giselle Sholler, Chair of the NMTRC and Director of Pediatric Oncology Research at Helen DeVos Children’s Hospital. “We are hopeful this will make a difference in keeping children in remission.”

SEE ENTIRE PHOTO ALBUM FROM THE 1st ANNUAL COFFEE FOR A CURE HERE

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ABOUT THE ISABELLA SANTOS FOUNDATION

In 2009, the Isabella Santos Foundation (ISF) was established through Isabella’s parents to raise awareness and research funds for Neuroblastoma, and received it’s 501(c)3 status in 2010. This foundation continues to fight Isabella’s fight in her honor and for all children who are fighting Neuroblastoma.

ABOUT THE NMTRC

The Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) is a group of 25 universities and children’s hospitals headquartered at the Helen Devos Children’s Hospital that offer a nationwide network of childhood cancer clinical trials. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma. The NMTRC’s mission is to create a national collaborative effort of researchers, oncologists and family advocates to bring forward new therapies for children with relapsed neuroblastoma and medulloblastoma with the goal of improving the quality of life and survival of children with neuroblastoma and medulloblastoma. For more information, visit: www.nmtrc.org. Follow NMTRC on Facebook and Twitter @NMTRC.

The Power of a Thank You

We are living in a world now where the anonymous donor is admired. All the random acts of kindness being done around the world and shared on social media are exploding. I personally love them and love doing them too. ISF has organized days of RAoK in Isabella’s name and they are such inspiring days to be a part of. I also love when we are able to help out families in times of need by paying mortgages in an effort to offer a little relief during hard times. No thank you necessary – we don’t need one from you. Our society is being taught that asking for a thank you is selfish and is only needed to boost one’s ego. Just do nice things because you can – and go on your way.

I have to say I’m a firm believer in this. I’m not waiting at my mailbox for a thank you note for a birthday gift and I’m not waiting in my kitchen for my family to thank me for cooking dinner. It’s not necessary for me and I didn’t think it was important, until someone thanked me.

We flew in on Thursday afternoon. I remember looking out my airplane window and saying, “It’s all white down there.” Grand Rapids was draped in snow and it sent chills down my body just looking at it. All I wanted to do was get in and out of this town as quickly as possible. I need to get pictures for social media to show where exactly our largest donation was being sent. We needed to do some hand shaking, introductions and hear more about what was going on in this snowy town. My expectations weren’t too high honestly. It was just another hospital visit.

The gratitude came in a little wave at first. I went for the handshake, and she went for the hug. It wasn’t a cold doctor hug; it was a real one – that honestly startled me a bit. We were treated to dinner with members of her staff and I could see the excitement in their eyes. We could ask anything we wanted and no conversation was off limits. The money we gave was turned around quickly and children were already on the trial and doing well. So well in fact that an iPhone came out at the table showing brain lesions of a current patient from a scan. Flip to the next picture and the brain lesions are gone. We heard words like cure, survival, collaboration and success. I left the dinner energized and wanting more, and that is just what we got.

The next day at the hospital was overwhelming. There was a crowd of employees waiting for us in the lobby who all wanted to shake our hands and say thank you. I know they were busy, but they stopped what they were doing to make sure they made us feel special. They honored our daughter and spoke of her as if they knew her. They talked about how thankful families of children battling cancer are to the work we do. Children will live longer and better lives because of our donation. Thank you from the doctors, the employees, the families, the children who are fighting and the ones being diagnosed tomorrow.

This whole experience got to me. I never thought I needed or wanted a thank you until I got one. It filled a bucket inside of me that I didn’t know needed to be filled. It made me feel like all the hours, days and weeks that we all spend doing this, was in fact making a difference. It wasn’t just checks in the mail and social media postings, it became something different. These people were honored to receive our hard earned donation and the smiles on their faces told that story.

Our tour through the facility continued much like the early morning greeting. Employees stopped what that were doing and got out of their chairs to come thank us and tell us how important this money was to them. I can’t tell you how many times we were thanked. Oddly, it was the first time I allowed myself to feel proud of the work we were doing. It also felt somehow different this time in terms of Isabella. This was not a business making a donation, this felt like a gift I was giving for the first time in her honor. It changed everything for me and it was all due to a thank you.

I wanted so badly for my employees, the members of the board, and everyone who has ever supported ISF to be there with us. It wasn’t Stuart and I that deserved that day of thanks. We never would have received these words without all of you. You all do it out of the kindness of your heart, not because you have a child fighting who needs the cure – you do it because you are amazing people. I’m so honored to know people like you and hope and pray that I am able to show you how thankful I am to you for helping us fund these treatments. I should be the one getting out of my seat and stopping what I’m doing to shake your hand and say thank you when I see you. I want you all to feel what I felt in Grand Rapids a couple of weeks ago. I want you to know that I’m humbled by your generosity and support. I’m grateful to you all for everything you do and hope that you are as excited as I am about where we are going and what we can accomplish, because of you.

I can only hope you feel cherished and thanked for all you do for ISF. It means the world to me.

Thank you all so very very much.

Erin

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ISF Awards Grant for New Therapy for Pediatric Cancer Clinical Trial

ISABELLA SANTOS FOUNDATION – HELEN DEVOS CHILDRENS HOSPITAL

 

ISABELLA SANTOS FOUNDATION GRANT SUPPORTS NEW THERAPY FOR PEDIATIC CANCERS IN A NOVEL CLINICAL TRIAL

Research Focused on New Therapy for High Risk Childhood Cancers

January 22, 2016 – The Isabella Santos Foundation announces a $200,000 grant to support funding of a Phase I/II cutting-edge pediatric clinical trial from the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC). This trial brings a new option for children with relapsed or difficult to treat neuroblastoma and medulloblastoma. The drug currently used for Parkinson’s disease, tolcapone, targets these cancers inducing cell death in laboratory models. It will be used in combination with the chemotherapy agent Oxaliplatin. This trial will be available at Levine Children’s Hospital in Charlotte NC, the home of the Isabella Santos Foundation as well as other sites and led by Spectrum Health Helen DeVos Children’s Hospital in Grand Rapids, Mich.

“We here at the Isabella Santos Foundation are excited to support new trials that directly impact children who relapse with Neuroblastoma” said Erin Santos, President of the Isabella Santos Foundation. “Our daughter Isabella suffered 5 relapses of in her fight against this deadly disease so we understand the importance of specializing in this area. We are also proud to be a part of funding research that will directly impact our local Charlotte pediatric cancer community and are thankful for Dr. Sholler’s research that expands outside her hospital walls.”

Neuroblastoma is a cancer of the sympathetic nervous system and medulloblastoma is a pediatric brain tumor. Both typically manifests when children are very young, with the average age at diagnosis being 18 months and remain challenging pediatric cancers in need of new therapies. With this grant from the Isabella Santos Foundation, new hope is brought to many families.

“We are incredibly thankful for the support of the Isabella Santos Foundation which allows our research to bring new treatments to children,” said Dr. Giselle Sholler, Chair of the NMTRC and Director of Pediatric Oncology Research at Helen DeVos Children’s Hospital. “We are hopeful this will make a difference in the lives of families fighting these difficult childhood cancers.”

 

 

ABOUT THE ISABELLA SANTOS FOUNDATION

In 2009, the Isabella Santos Foundation (ISF) was established through Isabella’s parents to raise awareness and research funds for Neuroblastoma, and received it’s 501(c)3 status in 2010. This foundation continues to fight Isabella’s fight in her honor and for all children who are fighting Neuroblastoma.

Screen Shot 2016-02-10 at 7.56.02 AMABOUT THE NMTRC

The Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) is a group of 25 universities and children’s hospitals headquartered at the Helen Devos Children’s Hospital that offer a nationwide network of childhood cancer clinical trials. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma. The NMTRC’s mission is to create a national collaborative effort of researchers, oncologists and family advocates to bring forward new therapies for children with relapsed neuroblastoma and medulloblastoma with the goal of improving the quality of life and survival of children with neuroblastoma and medulloblastoma. For more information, visit: www.nmtrc.org. Follow NMTRC on Facebook and Twitter @NMTRC.

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Arriving Now at Your Doorstep…”Ibby’s Wish Kits”

Summer is here and we are VERY excited to introduce to you…IBBY’S WISH KITS! If you are a parent, an adult or a runner that wants a project to give back to a Charlotte Children’s Charity, then these purple boxes of hope are for you! Inspired by Isabella’s three wishes for a world with no cancer- each “wish kit” is your very own tool box filled with what you need to host your ISF event! Near or far, young or old…we hope you will take a look. This is a great summer project for you or your child for an even greater cause! We will be offering three different “WISH KITS” based off of what you want to accomplish.

  • Are you a parent looking for a fun summer project that will also teach your child to give back to the community?  The BEAT CANCER Wish Kit for kids is for you and will making giving fun!
  • Are you an adult wanting to make a difference ?  The GROW HAIR Wish Kit for adults/corporations is the right choice to allow you to create any event that suites your lifestyle from a garage sale to a paint by design..anything goes!
  • Are you a runner?  We even have something for you – The LIVE MY DREAMS Wish Kit is geared towards athletes and gives you everything you need to organize your own running event in the area in which you live! You pick your team, your race and on your mark, get set….go!

PB Pic 2

DETAILS: (Please note..kits may vary depending on availability)

#BEAT CANCER: BOX OPTION #1 (CHILD’S BOX)

PRICE $50.00

  • ISF Pen
  • ISF pin for shirt
  • T- shirt selectable by options (add’l shirts available for purchase)
  • ISF bracelets
  • Water bottle
  • ISF brochures
  • Set up instructions for FirstGiving
  • Laminated signs for backstory and proceeds
  • Event suggestion card – Birthday party, bike a ton, bake/lemonade, race
  • Race bag
  • Ambassador Card
  • Self Addressed Stamped Envelope
  • Sidewalk Chalk
  • ISF Coloring Pages
  • ISF Temporary Tattoos

 #GROW HAIR: BOX OPTION #2 (ADULT BOX- Can Also be Customized for a Corporate or Small Business)

PRICE: $50.00

  • ISF Pen
  • ISF pin for shirt
  • Drink item selectable (Purple Cup, Wine Tumbler, Collapsible H20 Bottle)
  • T- shirt selectable by options (add’l shirts available for purchase)
  • ISF bracelets
  • ISF brochures
  • Set up instructions for FirstGiving
  • Laminated signs for backstory and proceeds
  • Event suggestion card – garage sale, business % profit day, poker night, cornhole tourney/ purse party, race
  • Self Addressed Stamped Envelope
  • Tote Bag, Hat

 #LIVE MY DREAMS: BOX OPTION #3 (RUNNERS BOX)

PRICE:   $50.00

  • ISF Pen
  • ISF pin for shirt
  • Specialized Runner tank or shirt
  • ISF bracelets
  • Water bottle
  • ISF brochures
  • Set up instructions for FirstGiving
  • Laminated signs for backstory and proceeds
  • Event suggestion card – Set up local DREAM TEAM, Run Clinic, Fitness Event
  • Self Addressed Stamped Envelope
  • Run Hat
  • ISF Temporary Tattoos
  • ISF Sweat band or Purple Shoe Laces

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We know that every person is different- yet we ALL want the same goal- to beat cancer and help fulfill Isabella’s wish of a world without it. June 28th will mark three years since she left us due to this horrible disease. Please help support her legacy in this way..by getting involved and giving back. These are on sale now and will ship right to your front door! We provide you with what you need to get started and the creativity is left up to you. Giving back in the name of an important cause is one of the most impactful things a person can do and one of the things Isabella loved most. She was our true inspiration in this and we would love to start a wave of people hosting incredible events in her name and in her honor. We hope you enjoy your event as much as we have enjoyed building these kits for you!


 

 

BEAT CANCER. GROW HAIR.  LIVE MY DREAMS.

EMPOWER YOURSELF. EMPOWER YOUR KIDS. “UN”EMPOWER CANCER.

Order YOURS HERE: www.ibbyswishkits.com

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