Tag Archive for: charlotte children’s charity

Wait until they become dragonflies…

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June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Wait until they become dragonflies…

“We are doing horrible things like talking to hospice about funeral homes, what to do if she dies in Disney, how to talk to our kids.. But I’m also getting moments last night where Isabella and I took a bath together and I washed her up and talked about all kinds of things like what animal we would like to be… she of course would be a bunny. I got her outand dried her hair and we cuddled on the couch. Hospice suggested a book called Dragonflies and Waterbugs to help talk about death to children. It’s a great book about this family of waterbugs who will occasionally crawl up a stem and not come back… even though they seemed very happy in their waterbug family. They made a pact that the next person that goes will promise to come back and tell what is up there. But when the next bug goes up the stem, she turns into a beautiful dragonfly. She loves to fly around and can see the waterbugs below. But when she tries to return, she can’t get through the water. Instead she will have to wait until someone else in her waterbug family decides to join her as a dragonfly so they can fly around together. I’ve only read Isabella and Grant the book but will use it as an example when the time comes.” – Isabella’s Mommy (June 3, 2012)

We bought a bulk stack of the Dragonflies and Waterbugs book and gave them to all of Isabella’s sweet friends and family to help everyone discuss her death. So now every time you see a dragonfly… don’t brush it away . It could be Isabella wanting to say hi.

Dragonflies and Waterbugs book: http://amzn.to/2s6Uu4F

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

ISF Funds Frontline MIBG Therapy with the Children’s Oncology Group

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In this picture is Isabella in MIBG therapy at CHOPT in Philadelphia. Isabella not only received this as a end of life treatment instead of a frontline therapy… she had to travel away from her home and family to receive it. This will be a game changer for kids fighting.

In 2016, funded a Frontline MIBG Therapy project with the Children’s Oncology Group (COG). The purpose of this project was to determine the effectiveness of pulling MIBG therapy, which was traditionally used as an end of life treatment, to the frontline of therapy for children with high-risk Neuroblastoma. We are excited to announce, thanks to your donations – this trial is ready for children across the country. Starting in August of 2018, the COG will start the process of enrolling over 800 children with high-risk Neuroblastoma and will enroll children over the next 3 years. Tomorrow night, Dr. Peter Adamson, Chair of the Children’s Oncology Group, will be with us here is Charlotte to speak at a private event about the advancement of the program. Can’t wait to share more updates.

This is great news for Charlotte because as you know, ISF has agreed to fund the creation of a MIBG at Levine Children’s Hospital! We are inching towards our goal of $1 MILLION DOLLARS and anticipate breaking ground in 2018. What this means is that in just one year, our local children will benefit from a trial that YOU supported in a room that YOU built. This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. Amazing.

This is due to your support. So thank you. Children of Charlotte thank you.

We were so proud to have been able to donate a total of $175,000 to the COG through three of their children’s cancer trials and programs.  Learn more about the programs YOU helped us fund through the COG.

First Quarter Fundraising Update

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We are excited to announce that The Isabella Santos Foundation has raised $260,000 in the 1st quarter of 2017. We have set a goal of raising ONE MILLION DOLLARS in 2017 for our 10th anniversary.  Your support will help us get our message of hope to more people than ever before and generate much needed research and treatment options to eradicate childhood cancers.
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It’s amazing to look back on where we were 6 years ago before Isabella passed away…   “I’m proud of our team and what we have done. Not only do we have the uphill battle every day but we do it in our own style and manage to keep it together the best we can. Not to mention the fact that while running uphill we have managed to raise close to $150,000 for various charities, mainly Neuroblastoma research. My mom and I were talking recently and my mom was saying how hard it is for her to understand all the good that Isabella brings to other people’s lives but how she has to suffer in the process. I’ve always struggled with this as well as I watch other children get to do all the “normal” things of childhood while she is hooked up to toxic treatments. But after thinking about it, I think of all the people in history that have suffered. But through their suffering, it brought something good. Maybe she is just one of those people in our lives that takes the bullet to make us all better people. Or maybe her suffering will help raise awareness and funds that will one day CURE all children. Who knows.” – Isabella’s Mommy, 2011
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Thank you to everyone for their passion and support.  It’s pretty darn incredible how far we have come.  We can accomplish so much if we fight cancer together.
Click here to learn more about donating to the Isabella Santos Foundation.

ISF Volunteer Opportunity: Auction Committee

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We can’t believe that it is almost May.  We have had such a wonderful start to 2017 and excited to dive into bringing you the BEST 5K and10K for Kids Cancer Race in September that you have seen yet.  This is our 10th annual Charlotte 5K and 10K race event and we look forward to celebrating Isabella’s life in the best possible way while bringing our community together.

At the 5K and 10K for Kids Cancer Race we have become known for our SILENT AUCTION.  What started out as a fun idea of having 20 raffles baskets available years ago has blossomed into fantastic way to raise funds for neuroblastoma research and pediatric cancer.  In 2016, our ISF Silent Auction and Raffle raised $80,000!  That is incredible!  Our raffle and silent auction includes beauty/spa packages, sporting events, date night outs, vacations, jewelry and more.  There is something for everyone.  We are looking for new volunteers to join our Auction Committee to help us.  Not only is volunteering for ISF rewarding, we can guarantee you will have fun while meeting many great faces.

“When I originally became involved with ISF, I was a volunteer on the Auction Committee.  Every year we host a huge auction at our annual 5k/10k for Kids Cancer in September.  The auction has become a staple at the race and is responsible for a large percentage of the monies raised at this event.  I felt such pride in being a part of something bigger than myself with a purpose of helping children fight cancer!  I didn’t necessarily have as much time to devote as I would have liked, but I did what I could.  I can truly say being a part of ISF has changed my life in so many wonderful and fulfilling ways! Today, I am the Auction Co-Chair and I couldn’t be more proud to lead such a giving and fun team!   We have several needs for this important committee.  Anyone with a passion to help others who can dedicate some time to helping us create an incredible 10 year anniversary auction this year is welcome!  We have needs for individuals who are not shy to ask for donation from businesses, or who have connections in the community.  We also need those who have time to fill out applications for donations, help organize the auction items, and help us wrap the packages!  We have room for anyone who can help!”  – Andrea Isaac, Auction Co-Chair
We have our first Auction Committee interest meeting on Wednesday May 3rd at 7:30pm.  If you can’t make the first meeting, we can send you details!  Please contact Andrea Isaac for the meeting location, if you are interested in learning more or have questions!  If you are business who would like to donate an item, all items are welcome!  Its great advertising as our auction is in front of thousands at the event itself as well as online!