ISF 2017 $1 Million Goal Hit!

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$1,000,000 was our 2017 fundraising goal. $1,025,467 was raised! We are beside ourselves with excitement and extremely grateful for your support. Thank you to our volunteers and employees that work tirelessly towards our foundation mission.

We set a very specific objective behind our 2017 goal… bringing a MIBG room to Levine Children’s Hospital. This new-state-of-the-art MIBG room will help families with kids facing cancer.  Charlotte will be one out of 20 hospitals in the country that will be able to offer this to patients. We are excited to see ground break in March in honor of Isabella’s birthday and look forward to sharing more specific developments as this new pediatric cancer treatment room and program developments.

ISF helped  fund the Frontline MIBG Therapy project trial through the Children’s Oncology Group (COG) last year. This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. It will be ready for children across the country in late 2018 where an MIBG room is available.  It is very exciting that Levine Children’s Hospital will be able to offer this advanced therapy.

WHAT IS MIBG? A cutting edge, targeted therapy used to treat relapsed or high-risk neuroblastoma with little to no pain and side effects. This treatment requires a highly specialized team to deliver the therapy and a special room to assure that patients, family, and health care providers are safe.

WHY IS BUILDING A ROOM SO EXPENSIVE? The room is specifically designed for this type of therapy and is created with lead shielding due to the radioactive nature of the treatment. These lead walls provide the highest level of protection for patients and families. The MIBG room will have an adjoining suite so the patient will always be close to their family.

I HOPE…

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There are so many things we HOPE for.  This poem (author unknown) sums up all our HOPES and the reasons we continue to fight pediatric cancer.  We posted this poem earlier in the year and not only did it become our most popular post of 2017, but of all time.  As we wrap up our 10th year of the foundation, we thank you for fighting with us, for supporting us, for crying with us, for believing in us…. and most of all for helping us continue to keep Isabella’s legacy alive as we fight childhood cancer.  It started with a girl… and she is changing the world!

We hope you and your family have a wonderful (and safe) New Years Eve and look forward to conquering our HOPES together in 2018.

Isabella after brain surgery

I HOPE…

I hope you never have to hear the words, ‘Your child has cancer.’

I hope you never have to hear, ‘The prognosis is not good.’

I hope you never have to prepare your child to undergo radiation or chem

otherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

‘It’s going to be okay, Mommy.’

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’

I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…

‘The cancer has returned’ or ‘The tumor is growing.’

And your friends become even fewer.

I hope you never have to experience any of these things…Because…only then…

Will you understand…

(author unknown)

ISABELLA SANTOS FOUNDATION RAISES $30,000, GIFT SUPPORTS NEUROBLASTOMA RESEARCH AT NATIONWIDE CHILDREN’S HOSPITAL

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Columbus, OH – 12/6/2017

The Isabella Santos Foundation has raised and donated $30,000 to Nationwide Children’s Hospital to honor the memory of their daughter, Isabella, and to advance pediatric cancer research.
“We are very grateful to the Isabella Santos Foundation for their generosity and dedication to supporting the research that is so important to so many of our families,” said Steve Testa, senior vice president and executive director of the Nationwide Children’s Hospital Foundation. “This gift helps us continue to discover new ways to deliver the best possible care to our patients, who come to Nationwide Children’s from across the country and around the globe.”
This generous gift was raised during a silent auction at the Isabella Santos Foundation’s inaugural Ohio chapter event, “Cocktails for a Cure,” in August. Attendees gathered to learn about pediatric cancer research, treatments and programs that impact local children in the central Ohio community. All of the proceeds from the event benefitted neuroblastoma research at Nationwide Children’s.
“We are thrilled to have expanded our organization into Ohio and Nationwide Children’s,” said Erin Santos, president of the Isabella Santos Foundation and Isabella’s mom. “This event was part of our one million dollar goal this year, and next year we look forward to doubling our impact and moving the needle forward on pediatric cancer research, honoring Isabella the entire way.”
The second annual Columbus event will be held in May 2018.
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About the Isabella Santos Foundation
The Isabella Santos Foundation is a tax-deductible 501 (c) 3 that was created in honor of Isabella Santos, who fought Neuroblastoma for over 5 years. The goal of the Foundation is to raise money and awareness for Neuroblastoma research, provide financial assistance to families with children who are suffering from cancer as well as provide financial support for organizations that support children with cancer.
About Nationwide Children’s Hospital
Named to the Top 10 Honor Roll on U.S. News & World Report’s 2017-18 list of “America’s Best Children’s Hospitals,” Nationwide Children’s Hospital is one of America’s largest not-for-profit freestanding pediatric healthcare systems providing wellness, preventive, diagnostic, treatment and rehabilitative care for infants, children and adolescents, as well as adult patients with congenital disease. Nationwide Children’s has a staff of nearly 13,000 providing state-of-the-art pediatric care during more than 1.4 million patient visits annually. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s physicians train the next generation of pediatricians and pediatric specialists. The Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded freestanding pediatric research facilities. More information is available at NationwideChildrens.org.

Donations At Work: Update on Project:EveryChild

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Your donations at work! We love when we can share ISF funded trials or program updates. In 2016, ISF awarded Project:EveryChild with $25,000 where every type of childhood cancer, no matter how rare, will be studied by more than 200+ pediatric cancer programs of The Children’s Oncology Group, as they lead the way towards better cures.
 
With the help of ISF funds, Project:Every Child has completed the following:
 
– Project:EveryChild opened at 205 member institutions across 5 countries
 
– Combined enrollment a total of 5,916 children on to the protocol.
 
– COG Biorepository at Nationwide Children’s Hospital has collected and bio-banked nearly 20,000 biospecimens which will be made available for future translational research efforts.
 
– Expected cumulative enrollment total to reach 7,000 by the end of 2017 and then somewhere in the range of 11,000 – 12,000 by the end of 2018.
 
– Protocol amendment approved by the National Cancer Institute: COG member institutions are now implementing all of Project:EveryChild’s initially envisioned components, including the collection of patient circulating tumor DNA (ctDNA) and parental DNA samples. The collection of ctDNA is especially impactful, as it has both immediate and downstream benefits that will significantly impact how all children with cancer are treated.
 
This research capability, coupled with parental DNA collection via blood and saliva samples, will have a profound impact on our understanding of the genomic changes that arise in tumors, as well our knowledge of risk factors that increase the chances of developing childhood cancer.
 
Thank you for continuing to fight cancer in Isabella’s honor. We couldn’t have helped fund this project without you!

Lake Norman Coffee for a Cure Brings in Over $35,000 for Pediatric Cancer Research

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2017 Lake Norman Coffee for a Cure. Photo courtesy of Localscroll.com

Our 2nd annual Coffee for a Cure hosted by our ISF Lake Norman chapter was a huge success.  Thank you to the 250 men and women who attended and the sponsors and local businesses who gave time and money to this event.  This event served as a call to action in the fight against pediatric cancer and to educate community members on the importance of bringing pediatric cancer treatments home to Charlotte.  We were able to raise $35,000 and donations have continued to come in.  These funds bring us one step closer to our 2017 $1,000,000 fundraising goal to fund the creation of a MIBG room at Levine Children’s Hospital.

Our Lake Norman chapter could not put on such a wonderful event if it wasn’t for the support of our community businesses who help us through their sponsorship. It is through their passion for charitable giving and making a local impact that we are able to continue Isabella’s fight. Thank you to the following businesses:

2017 Lake Norman Coffee for a Cure. Photos courtesy of Localscroll.com

During the event, we introduced our new major gift society, called The Three Wish Circle, with an annual gift of $5000 or more, donors can take their support of the ISF mission to the next level by funding more research for childhood cancer and help to bring innovative treatment options to our local community.  If you have questions or want to know more about how to take your support to the next level, contact our ISF Development Director, Tia Wackerhagen.

We cannot begin to put words to how grateful that we are for the impact you are helping us make, thank you for your support.. We are so proud of what we have accomplished together and it is because of YOU. We could not do this alone and could not continue our fight without your help. We humbly thank each of you and look forward to a world with no more cancer where we will beat cancer, grow hair and live the dreams of all children fighting the fight.

We appreciate Local Scroll Charlotte for capturing the event, view all photos of the 2017 Lake Norman Coffee for a Cure.