This Facebook Fundraiser hit us in the hearts when it showed up on Isabella’s Birthday in March! We are so honored Emily chose to raise money for ISF in Isabella’s name for Gia’s birthday (and Isabella’s!). Emily and Gia surpassed their $250 goal and raised $335 during the day. Thank you from the bottom of our hearts Emily, Gia and friends for your support!
[March 9, 2020] “Today is Gia’s birthday. I’ve been able to enjoy a decade with her – the best ten years of my life. What a blessing it is to be a mom, and to have a healthy child! Today would have been Isabella’s 15th birthday, but she didn’t live to see her 8th. Every year when this day rolls around, I am thrilled to mark another year with my best girl, but that joy always comes with a pause as I think of Isabella.
I got to meet Isabella when I worked at the Ronald McDonald House of Charlotte. She would show up with her mom or dad and help us to fundraise. Even though she and her family were going through one of the most difficult things any family can go through, there they would be, out helping us to raise money for other families who had children being treated at the hospital. I was always in awe of this dedication to assisting others.
I don’t have much to give, but I gave anyway. I gave because I am so blessed to have a healthy child who is celebrating her 10th birthday today. I gave because I truly believe that every dollar matters in the fight against pediatric cancer. I gave in honor of Isabella.”
-Emily, Gia’s Mom
Thank you to Victoria and Jolee for fundraising in March. Thank you to Linda, Crystal and Gwen for setting up Facebook Fundraisers in April!
It’s hard to put into words how grateful we are for the impact The JEM Project’s $250,000 donation to ISF is creating for kids fighting rare pediatric cancer and for our community. Follow along this week as we share ‘Thank You’ letters from many of those who feel the incredible significance of their gift.
Madison’s Mom shares what this donation can do for other families fighting pediatric cancer…
Dear JEM Project,
“What do you want to be when you grow up?” – the all too common question asked to kids when they are little. My answer was always “a teacher”, but in my heart I just wanted to be a mom. When Mickey and I got married we talked about having a big family, and would have been perfectly happy with our own reality show “Fedak’s Fab Fifteen”, but God had other plans. In 2009, Riley was born. She was beautiful and healthy, and you couldn’t tell me the world didn’t revolve around her. We were blessed again when God gave us Madison in 2012, and immediately I knew how lucky I was to be a mom to two of the most beautiful, precious little people. Our “parenting” story would stop with Riley and Madison, and we were both perfectly happy with that. Our lives were going great, until they weren’t.
Neither of my babies ever went to the doctor unless it was a regular checkup or the occasional ear infection. We rarely had fevers, no broken bones, and no extreme injuries. But on April 5, 2018, Madison’s pain took us to an emergency room that gave us the most devastating news any parent could receive. I’m pretty sure you know that story by now, but what you don’t know is that in my mind, I kept questioning, “What did I do wrong?”. My thoughts immediately went back to my pregnancy with her. Did I stand too close to the microwave? Did I use my cell phone too much? Was a computer too close to my belly? What did I eat? Did I eat the right things? Did I eat something wrong? For two years I have argued with myself that I could have done something to have stopped this before it even began, but I have just recently realized that it isn’t about what I did before she was diagnosed, it’s about what I am going to do now. Now that I know this disease can steal a child from her momma without warning, I have to be a part of something that will look to the future and figure out a way that no other Madison will ever lose her life to this ugly disease.
When I talked to Rachel, ISF Marketing Director, in early January, she shared that the ISF team was furious. They were all so angry and disappointed that the work they were doing was not enough to save Madison. She shared that they were working on raising funds for research trials in Madison’s honor, and I was thrilled! My first thought was, “Madison might not be here anymore, but she is still affecting people!” Madison was a tiny little girl who can still make a difference, and I had to be a part of continuing the fight she began.
Rachel asked if I would be willing to speak at a breakfast/coffee event for ISF, and truthfully I had mixed emotions. It wasn’t that I was scared to speak in front of so many people, I was honestly scared that my words wouldn’t be powerful enough to raise the money. I was worried that I would fail the entire team, or worse that I would fail Madison. I wrestled with the idea because Madison had only been gone for a few weeks, and at the time of the event it will still be so fresh and raw. But I also knew what better way to make an impact than to share those raw feelings. Knowing how important that week was for ISF in terms of fundraising, I was devastated COVID-19 had cancelled the event. Not having this event meant not having the money.
But then Rachel called me again in early April and shared the unbelievable news that you and your team pledged $250,000. There hasn’t been a word created yet (and I’ve looked) to adequately describe the overwhelming feelings of gratitude I have right now. Through your more than generous donation, I have realized there is no way I can fail as long as Madison’s story continues to be told. I’ve shared recently that my biggest fear no longer exists. I feared for two years that osteosarcoma would take Madison from me, and it did. I can’t hold her or tuck her in at night. I can’t pick out her clothes or run to her when she calls me in the middle of the night.
Cancer stole so much from me; it stole from my family. But because of your donation, there will be less cancer families who will know this statement even exists. You didn’t even know Madison, but I so wish you did. She was beautiful, inside and out. And when I say she loved everyone, I mean EVERYONE. She welcomed everyone into her room, even when I wanted a break. She made people happy, and unfortunately she will no longer be able to share that love with the world. But thankfully, we can. Because of what you have so selflessly done, the team has the money to begin the search. They can now start finding an answer. They can find a cure so that no other mom will never know the pain of losing a child.
Thank you. Thank you for the donation, but for so much more. Thank you for allowing me to share Madison with the rest of the world. Thank you for being a part of something huge. Thank you for being the team who kept Madison’s and the ISF’s mission on course. I can hear her saying, “Look mom, I got some more soldiers for my army!”
https://isabellasantosfoundation.org/wp-content/uploads/2020/04/Laura-JEM-Quot-8.png10801080Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2020-04-21 18:35:102020-04-21 18:57:51Dear JEM Project: Thank You For Being the Team Who Kept Madison’s & ISF’s Mission on Course
We are extremely overwhelmed with gratitude to announce a $250,000 gift graciously donated to ISF by The JEM Project. This organization was set to be our presenting sponsor for our 2-day coffee events and stepped up to make an even larger impact during a time of crucial lost revenue for us.
During this time, concerned for our future and our ability to impact kids fighting cancer, we want to remind everyone how essential nonprofits like us are. Pediatric cancer doesn’t stop, no matter what is going on in the world, and neither will we.
Thank you JEM Project. It’s hard to put into words how grateful we are for the impact you are creating for kids fighting rare pediatric cancer and for our community. Not to mention the difference you have made on each of us at the foundation. You have given us the ability to put one foot in front of the other, during this difficult time and continue our mission. We are so humbled and appreciative of your organization. Follow along this week as we share ‘Thank You’ letters from many of those who feel the incredible significance of this gift.
Isabella’s Mom, Erin, shares first how powerful this impact is for her personally…
I hit it off with Leah in about 10 minutes over lunch. We connected on all things family, life and cancer. Listening to her tell her family’s cancer story just proved to me, as it does time and time again, we all have a story to tell. It isn’t until you lose someone from cancer, that you really understand the importance of funding. We always appreciated all the family services that were provided to us when our daughter was going through cancer. Gas cards, dinners, gifts for our kids – all necessary parts of the process. But when your daughter dies – it became crystal clear to me why she died. There weren’t enough people out there overflowing research buckets with money. Then you meet more and more kids, and their stories remind you of your own – you become close to these families and you see the look in their eye. They are scared, just as you were – but they look at you and the look in their eyes says… “please hurry”. Our Foundation lost one of our closest patients (Madison) in December of 2019. It rattled us all to our core and it was the first time I thought about quitting my job. It wasn’t happening fast enough and I felt the blame for this little girl not surviving. My own daughter would tell me over and over again how proud she was of me because the job I was doing was saving little girls like Madison. And then we didn’t save her. I wondered what we were even doing anymore if we couldn’t save this one I REALLY needed to save. I have to say, I checked out. I had to do some true soul searching.
Fast forward to mid January. Our team was pissed. We were hurt. We decided that we needed to make big changes. Like my daughter, I felt like Madison was taken to change people. I couldn’t ignore how similar this situation felt. The feeling of wanting to just walk away – not allowing yourself to change because you don’t want to feel this pain every day. But instead, I allowed Madison to change me. 7 years after my daughter passed away – a little girl was brought into my life and then taken from us – a reminder of why this whole thing started 13 years ago. We started planning.
Our 2 day coffee event was looming and I have never seen my team so excited. We felt like we had a purpose. Madison’s mother had agreed to speak and I knew it would be one of the most difficult things she would ever do. As a team we set a goal. $250,000 over two days. Not only were we going to continue our mission to bring the top doctor in the nation who specializes in rare cancers to Charlotte, but we were also adding in trials in honor of Madison to help change outcomes for kids with Osteosarcoma. We were ready. Our two day event was filling up, our sponsor list was bigger than ever and our program was set.
And then it hit. As each day passed we felt our event slipping through our fingers. At first it felt like a train coming right at us that we were trying to derail, but no matter what we did – it just kept speeding up. I knew we had to make the call. The word had just come out that gatherings of over 50 people were prohibited. My stomach just dropped. It was the first week in March and our event was a little over 2 weeks away. I was out of town and found myself taking long walks – wondering how to shake this feeling that we were letting Madison down…again. How could this be?
Then Leah from The JEM Project called.
I feel like the call was a blur. I just remember sitting in my room once the call ended and crying. In 13 years of the Foundation I have never received a call like this. You would think receiving money for rare pediatric cancer would be easy, but it’s not. People don’t really understand unless they have lived it. But for the first time, someone got it. They didn’t have to bury their own child to get it either. The money we received from the JEM project saved us all. Not only did it allow us to continue with our mission but in a way I feel like it saved me the most. My daily struggle of wondering if I am ready to move on. Am I still making a difference? Can I look at these families and tell them that we are in fact hurrying because their kids are just as important to me as mine was? This money did all that for me. It kept my team alive, it kept these families alive – it kept Isabella’s dream alive.
Dear JEM Project…
Jessica, I have never had the pleasure of meeting you – but I hope one day I will. I want you to know how meaningful this donation was to so many people. You have such an unbelievable opportunity to change peoples lives forever. The lives of kids, their parents and families and all of us who are trying to save them. The work you do blows me away when I see all the organization you are assisting. You are a lifesaver and no thank you I can ever say will truly convey how I feel. It has left me speechless – which rarely happens.
Leah, words can’t describe what meeting you has done to me. Thank you for “getting it” and believing in me. I promise to never let you down. You have been a person who has come into my life and changed things forever.
The state of our country scares me. I fear that people will forget that cancer never stops, even during all this. If we forget about organizations like ISF right now, who will be there for these kids when they need it the most? I pray our community will rally around us and remember that we are ESSENTIAL. We can’t stop. Lives depend on it.
My hope is this is just the beginning of our relationship with the JEM project. I am excited to keep you both informed of what we are doing and how your money is working because there is so much more we want to do. Stay tuned. We are just getting started.
https://isabellasantosfoundation.org/wp-content/uploads/2020/04/JEM-Thank-You-2.png10801080Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2020-04-19 20:51:012020-04-23 20:47:42Isabella Santos Foundation Receives $250,000 Gift by The JEM Foundation
Our city is full of the best people and best businesses. Every day we learn of something spectacular that our volunteers, supporters, sponsors, and partners are doing during this crazy time and it brightens our hearts and gives us hope. We plan to spotlight these stories through #FeelGoodFriday. Every Friday, we will spotlight something spectacular around us. We hope it will brighten your day too!
Today’s #FeelGoodFriday shout out is to NoDa Brewing Company who has released a beer to honor and support healthcare workers in the Carolinas. Make sure you head over to the #NoDaBrewThru to pick up your taste, open daily from 12pm-7:30pm.
NoDa Brewing Company has brewed up something special. Zuper Heros, brewed out of love and released this week, honors and supports healthcare workers. NoDa is donating 10% of all sales for Zuper Heroes to “22 And You”, a fundraising effort created by Christian McCaffrey to support front-line medical workers including physicians, nurses and other hospital staff battling the COVID-19 pandemic in hospitals throughout the Carolinas.
Zuper Heroes is a classic Czech Pilsner with earthy, herbal Saaz hops, that is thrust to even greater taste heights with American-grown Zuper Saazer hops. It is a perfect brew to celebrate the first responder Zuper Heroes in our community that are thrust into extraordinary action every day.
NoDa Brewing has been heavily involved in the community since their existence. We are extremely thankful to have them as a Sustaining Sponsor and appreciate their countless efforts in supporting ISF.
Now more than ever we are so proud to be part of the Charlotte community. It’s incredible to watch our local businesses tackle new challenges with creative initiatives to not only support themselves, but also their local community and healthcare workers. Head over to the #NoDaBrewThru and let’s support them, open daily from 12pm-7:30pm. 🍻🚙
https://isabellasantosfoundation.org/wp-content/uploads/2020/04/zuper-heroes.jpg15362048Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2020-04-16 18:14:492020-04-16 18:14:54#FeelGoodFriday – NoDa Brewery Releases a New Beer to Honor and Support Healthcare Workers in the Carolinas
Our city is full of the best people and best businesses. Every day we learn of something spectacular that our volunteers, supporters, sponsors and partners are doing during this crazy time and it brightens our hearts and gives us hope. We plan to spotlight these stories through #FeelGoodFriday. Every Friday, we will spotlight something spectacular around us. We hope it will brighten your day too!
Every year local contractors in the Charlotte area participate in a ping pong tournament. Our Sustaining Sponsor, JE Dunn, won last year’s tournament and with that winning accolade came the chance to choose their non profit of choice to be the benefactor of the 2020 tournament. JE Dunn chose Leo’s Pride Foundation, who helps families that have children with rare genetic disorders.
The JE Dunn team had planned on using the funds raised through the ping pong tournament to help a Leo’s Pride family get a van for 15-year-old Devon to get around easier. Devon has a rare disorder that binds him to a wheelchair and his mom has to carry him in and out of their vehicle regularly, making everyday activities and movement challenging. As with most activities, the ping pong tournament has been postponed due to COVID-19, but the JE Dunn team recognized Devon’s needs still exist, even though most everything else stopped. How did they step up to the challenge? … they made the van donation happen last week anyway!
Devon, his family & their new van
Now that Devon and his family have this new van, they will be able to do all of the activities they love with more ease.
We have felt a connection to JE Dunn since they built the ISF MIBG room at Levine Children’s. We got to know their team through the design/build process and were touched by their desire to know about Isabella and other kids fighting cancer. JE Dunn believes every child deserves a future filled with moments of opportunity. They believe they should be provided a good education and any resources they need to live a healthy and happy lifestyle. We are fortunate our teams crossed paths and they believe in our mission as well! Last year, JE Dunn donated $15,000 to ISF as part of their Annual Poker Tournament. And this year, we are so proud they are a Sustaining Sponsor supporting ISF all year long! This team has heart and passion and we love how they continue to raise others up in our community.
Thank you JE Dunn team for doing spectacular things in our Charlotte community!
https://isabellasantosfoundation.org/wp-content/uploads/2020/04/LeosPrideVanGiveaway_04-08-2020-14-scaled.jpeg25601920Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2020-04-09 19:14:272020-04-09 19:39:03#FeelGoodFriday – JE Dunn Gives Back in Charlotte Amid COVID-19
