Named Funds Archives - CURE Childhood Cancer

Blackberry Smoke Helps in Big Ways & Small

In 2009, at the age of three, Lana Turner was diagnosed with neuroblastoma. Lana’s dad, Brit, is the drummer of the popular rock band Blackberry Smoke. Thankfully, Lana got through treatment and is doing great today. But Brit and the band wanted to ensure all children with cancer have a chance to grow up and live life like Lana is doing, so they started donating money raised for fan meet-and-greet packages to childhood cancer organizations. Since then, the band has raised more than $700,000 to fight childhood cancer.

“As a band, we have always tried to lend a hand anytime we were able,” Brit said. “But it wasn’t until Lana was diagnosed that I felt it from the other side. This was the first time I felt like I was completely helpless, and I made a promise to help people going through the same thing.”

While much of the funding generated by the Lana Turner Foundation has been allocated towards pediatric cancer research, Brit and the band recently celebrated the first anniversary of partnering with CURE to provide meals to children with cancer and their families through our Open Arms Program.

“We know that a hot meal can make a big difference on a difficult day for children fighting cancer and their families,” shared Brit. “We also wanted to ensure that we provided a healthy meal for them because some people might not have that option.”

The band recently celebrated its 21st year of making music together. To celebrate the fact that the band was over drinking age, they worked with New Realm Brewery to create a beer for their fans. Blackberry Smoke American Lager was the award-winning creation. But the team is also collaborating to provide healthy food. New Realm is also a restaurant, and the chef creates a high-quality, organic menu for the patients and their families every month.

To get the food to the hospital, the band tapped the local VFW chapter and the Paulding County Sheriff’s Office, who deliver the meals in style.

“It makes us feel good to do specific things to help families in crisis,” said Brit.

And it means a lot to the families served and is a much bigger thing than most people would think, as one mother expressed recently.

“Thank you so much for the nice meal. In the outside world, we have access to anything and take it for granted. But it can get quite lonely, and eating the same hospital food every day is tough. There are some days when we just won’t eat because it’s so tough. But you bring a smile to families in here when you serve.”

For more information about Open Arms Meals, click below.

Open Arms Meals

Mark Myers In Childhood Cancer, Children, Named Funds

A Million Reasons to Hope

Lake, Mary Elizabeth, and Melissa met while fighting acute myeloid leukemia (AML). Although they were different ages, they formed a unique and special bond. So did their families. The three fought the disease bravely, but each ultimately passed away just months apart. As their families grieved their loss, their shared tragedy strengthened the bond between them.

The Paris, Thompson, and Depa families

Melissa’s family already had a Named Fund with CURE Childhood Cancer aimed at advancing research into cures for AML. They invited Lake and Mary Elizabeth’s families to join them and changed the name of the fund from the Melissa Strong Fund to United for a CURE. They were, in fact, united in their hope for better outcomes for children forced to fight AML in the future. And they worked hard to raise money by selling gold bows and garden flags, washing cars, hosting golf tournaments, and creating carnivals, among other things. Their shared sweat and tears have now taken their fundraising efforts across the $1,000,000 mark, and the investment in research is becoming a source of hope for children with AML.

United for a CURE began funding Target Pediatric AML, which is the work of Dr. Soheil Meschinchi at Seattle Children’s Hospital. Through genetic testing, Target Pediatric AML’s aim is to identify common genetic changes in children with AML and target those mutations with existing drugs delivered in the right combinations.

“This is all about understanding the enemy at a deeper level and finding ways to apply that knowledge to destroy it,” said Julie Guillot, childhood cancer advocate and co-founder of Target Pediatric AML. “The data we’ve been able to build since the project started is like a snowball getting bigger as it rolls downhill. CURE and United for a CURE were the project’s largest private funders, and it is now a large international clinical trial that will benefit children and adults worldwide. Those three children really set the snowball on its way.”

Sophia

Recently, Dr. Meschinchi made a discovery that exemplifies the hope that the collection of this data can provide. There is an AML subtype that only occurs in infants and toddlers and has a very poor prognosis. As he poured over the data acquired on this subtype, Dr. Meschinchi noticed a cell cluster and drilled into it to find what was over-expressed in the cell. As he looked more into that cell cluster, he realized the same cluster exists in certain types of ovarian cancer. Fortunately, a drug is currently in clinical trials that is proving very effective against the form of ovarian cancer with the cell cluster.

This proved a timely discovery for a little girl named Sophia, who was fighting this particular AML subtype. In January, Sophia’s cancer elevated to 95% in her bone marrow – meaning that she only had 5% marrow in her bones. The rest was cancer! Dr. Meschinchi was able to get approval from the FDA and pharmaceutical manufacturer to give the ovarian cancer drug to Sophia. After only two infusions, the cancer cells in her marrow were reduced from 95% to only 1%. With her bone marrow nearly free of cancer, she was able to receive a bone marrow transplant at the end of April. Today, she is cancer-free.

Love for Lake, Mary Elizabeth, and Melissa led their families to raise money in the hope of finding a cure, and now a little girl is in remission because of their effort. And that hope is building as discoveries continue to grow.

“This project is searching for individual therapies for every child to improve their chance of survival,” said Joe Depa, Melissa’s father. “It’s too late for Lake, Mary Elizabeth, and Melissa. But we hope someday their names are attached to a cure for AML so that other children win their fight.”

Mark Myers In Childhood Cancer Awareness Month, Children, Named Funds

Carrying Hope

Trenton Kindred will carry an extra bit of hope when he walks across the graduation stage in his scarlet cap and gown. Not only hope for his future that was once in doubt, but he also carries a special hope for others that he and his family have nurtured since 2006.

When Trenton was only one year old, he was diagnosed with stage four neuroblastoma. His parents, Greg and Ginger, had to watch as their baby began a very harsh treatment and all its horrible side effects. They were told he had a 20% chance of survival and a 70% chance of relapse. Before reaching his 25^th month, Trenton endured five rounds of intense chemo, two bone marrow transplants, 21 days of being put to sleep during radiation treatments, several surgeries, 27 port line infections, and six months of oral chemo.

Through it all, Trenton fought back. His determination and love of life helped him get through these rigorous challenges. In 2006, Trenton was declared cancer-free.

“Trenton’s experience has shown us the huge need for less-toxic cancer treatments specifically tailored to kids and their growing bodies,” Ginger said. “Our family hopes that in the future, no other family will ever hear the heart-sinking words ‘Your child has cancer.’ But if that does happen, there will be hope – a hope of a cure and less toxic treatments tailored to kids that will allow them to be kids that grow into healthy adults.”

Not ones to sit idly by and let others do the work, the Kindred family started the Trenton W. Kindred Research Fund, a named fund at CURE. The purpose of the fund is to support childhood cancer research. The Kindreds and their supporters are committed to advancing better treatment for neuroblastoma and, ultimately, to find a cure for this aggressive disease. To date, the fund has raised $303,465 to fight childhood cancer! That is a lot of hope that Trenton and his family have provided to other children in the fight.

And Trenton? He’s doing great these days. After graduating with honors, he will head to Oglethorpe University in the fall, where he will study Business Administration and Economics. He’s not 100% sure where that will lead but is hoping to further his education in law school as a corporate or commercial real estate lawyer.

“He continues to amaze us with his infectious humor, shyness, and love for life,” said Ginger. “He’s an old soul, and he is fearless. But he is also reserved and has a soft soul that we think comes from staring into the darkest of places at such a young age. He is truly a miracle, and our family lives each day not taking anything for granted.”

Mark Myers In Catie's Fund, Events

Back Together Again

It’s been two years since we could have an in-person Catie’s Gathering event. Catie’s Gathering Savannah, presented by Coastal Electric, brought us back in gear in a big way. It was so good to be together on March 11, when more than 500 people gathered at the Kehoe Ironworks to raise money for childhood cancer research and enjoy a special evening together.

“Driving home last night, I was trying to pick a favorite moment, and I couldn’t,” said Catie’s mother, Jenny Wilkins. “There were so many moments that made me laugh, others that moved me to tears, some that made me cheer, and some that just warmed my heart.”

CURE vice-president Mandy Garola started the Savannah Catie’s Gathering nine years ago. There are so many reasons it continues to grow – not the least of which are the sponsors, committee members, volunteers, staff, hostesses, vendors, donors, and guests.

Mark and Robin Myers shared their beautiful Kylie’s story. Carlson & Co. and Kaufman-Heinz made everything work seamlessly. Holly Webb handled the technology while the Junkyard Angels warmed us up with great music. The evening’s host, Andrew Davis, kept the evening flowing, and auctioneer Kenny Williams did an amazing job.

“I’ve been trying all day to put last night into words, and it’s nearly impossible,” said Mandy. “The growth that we’ve seen at Catie’s Gathering – Savannah is tremendous, and last night was the best event we’ve ever had. Looking around that room and seeing my friends, family, survivors, current families on treatment, and special people from all my worlds colliding just warmed my heart.”

Catie’s Gathering is having a tremendous impact on children with cancer. Money raised funds CURE’s Precision Medicine Program, which seeks to bring genetic therapies to children.

“When Catie was sick, precision medicine wasn’t an option for kids battling cancer,” Jenny said. “I will always wonder if it would have made a difference for her. The good news is that it is becoming an option for more and more kids battling high risk and relapsed cancers. I truly believe this is the future of pediatric cancer treatment, and I pray it’s the way we finally defeat this awful disease. Thank you to all who supported the event to take us another step closer.”

The 2022 Catie’s Gathering Savannah raised $188,825 – the highest total ever. Thank you to all who made this evening possible.

If you would like to see a photo gallery from the evening, please click HERE.

Mark Myers In Sam Robb Fund

A Letter from the Robb Family

Dear Friends,

Some say that you die twice in life. Once when you take your last breath, and a second time when someone says your name for the last time. We are grateful that, in the 14 years since Sam took his last breath, we, along with so many others, are continuing to say his name and honor his memory.

As time has passed, we have been able to remember Sam and smile. As a family, we reflect on our favorite memories and share stories that make it seem like June 25, 2007 was just yesterday. But we are approaching another milestone, and with that milestone comes the hard truth that this fight is not over.

The average age of a child diagnosed with childhood cancer is six, and their battles with cancer can last for years. Doctors and nurses are pivotal in the success of each child’s diagnosis and battle with cancer. Sam was especially grateful for the care and support of his doctors, particularly Dr. George and Nurse Erika. They exemplified the immense value of having a medical team dedicated to supporting each child beyond the routine treatment. We are so grateful they were there for Sam, and their example motivates us to continue our work to support Childhood Cancer Research through the Fellow Program at Emory University School of Medicine.

Since founding the Sam Robb Fund in 2007, we have been able to fund six Sam Robb Fellows. We are grateful for your ongoing support, especially this year, as the world has been grappling with the coronavirus. Your generosity enables us to support our fellow and keep Sam’s memory alive.

We hope to gather in the upcoming year. Many blessings to you and your families,

Sam, Annamarie, Liz, Caroline, and Katherine

PS: It is a rare blessing to find a new picture after so long. But we found this picture of Sam recently and wanted to share it with you, our friends.

The Sam Robb Fund

Mark Myers In Named Funds, Uncategorized

A Rock Band & A Little Girl Named AC

At first glance, an iconic Southern rock band and a sweet little girl with big hazel eyes would seem to have nothing in common. But a deeper look reveals two families, each with little girls stricken by cancer, who share a resolve to make a difference in the fight against childhood cancer.

In 2009, at the age of three, Lana Turner was diagnosed with neuroblastoma. Lana’s dad, Brit, is the drummer of the popular rock band Blackberry Smoke. Thankfully, Lana got through treatment and, at 13, is doing great today. But Brit and the band wanted to ensure all children with cancer have a chance to grow up and live life like Lana is doing, so they started donating money raised through meet and greet packages to childhood cancer organizations.

In 2019, Blackberry Smoke worked with CURE to create a “Named Fund” called the Blackberry Smoke Fund. The goal is to focus the funds the band raises through the meet and greet packages and the annual Blackberry Smoke Ride for CURE for greatest impact. They felt they could do this best by working hand in hand with CURE.

As Blackberry Smoke was hosting meet and greets to raise money for research, another family across town was dealt a devasting blow. Another little girl, six-year-old Anna Charles (or “AC”) was recovering from a tonsillectomy. To her family’s shock, a blood test revealed she had leukemia.

Three days after her diagnosis, a mass of AML cells was discovered on her spine. She had emergency surgery to remove the mass, but it left her spine in shock – causing her to become paralyzed from her lower chest down. After four rounds of chemo, Anna Charles relapsed and began preparing for radiation and a bone marrow transplant. Unfortunately, her body began to shut down before the transplant could be scheduled. On September 16, 2018, Anna Charles passed away. Devastated by the loss of their beautiful little girl, AC’s family felt compelled to help other children facing the brutal disease.

“We have hope that one day there will be a cure for childhood cancer,” shared AC’s father, Benji. “Until that day comes, we are going to make sure that we do everything in our power to help find better treatments for all of our kids who are battling cancer. They are all ours!”

AC’s family created the Anna Charles Hollis Fund at CURE to provide advance clinical research relating to acute myeloid leukemia.

“CURE’s Named Funds are a great way for families to create a legacy for their child or otherwise honor the journey they have endured,” explains CURE’s Executive Director, Kristin Connor. They allow us, as a childhood cancer community, to work together for greatest impact while honoring the children who fight this fight.”

If you’d like to learn about honoring a Childhood Cancer Hero through a Named Funds, please visit curechildhoodcancer.org/about-cure/named-funds/ or fill out the form below and we will be in touch.

Mark Myers In Catie's Fund

Effingham County’s Catie’s Gathering 2020

An amazing group of people came together in Effingham County on Saturday, March 7^th to enjoy a great night of community and raise money to fund life-saving research for pediatric cancers. This was the 10^th annual dinner benefiting Catie’s Fund, a named fund of CURE Childhood Cancer. Formerly called Sisters on a Journey, the event is now known as Catie’s Gathering.

The on-going rain in the community prior to the event necessitated a last-minute move from Honey Ridge Agri-Center to Marlow Elementary School. Several schools and organizations in the county stepped forward to offer their space once word of the need to move got out. Members of the community all pitch in and do what they can to make a difference – which is a classic example of what makes this event so special. Two in-kind sponsors, Carlson’s Premier Events and Kaufman Heinz, were instrumental in making the venue change successful.

Other than the move to Marlow, things went as planned. Sponsors, in-kind donors, CURE families, volunteers, table hostesses, and guests all came out for a great night. Before the start of the event, guests enjoyed perusing silent auction items and listening to live music provided by local band, Goshen Travelers.

One of the things that makes this event so unique is that each table is decorated individually. The table hostesses chose a theme or color scheme and created elaborate tablescapes and centerpieces. The hostesses certainly weren’t shy on creativity when they came up with themes like Crushing Cancer, We’ve “Goat” to CURE Childhood Cancer, Cooking for a CURE, and Kissing Childhood Cancer Goodbye.

Emcee, Lonnie Pate, started the program by welcoming the crowd. Simply Southern Catering served guests a delicious meal and Southern Kafe on 17 provided a great coffee bar. Door prizes and an exciting live auction with auctioneer, Kenny Williams, really got things rolling. Kenny later shaved his head in honor of kids fighting cancer and to celebrate all the money raised that night.

CURE’s Jenny Wilkins and teenage cancer survivor, Seth Rousch, shared some facts about childhood cancer with the crowd before Seth shared about his journey through childhood cancer. He shared some very difficult parts of his story including the months he spent away from home undergoing CAR T-cell therapy and eventually a bone marrow transplant.

In a poignant display, cancer survivors and families who had lost their child to cancer were invited down front for a candle-lighting. Each family or survivor shared the name and diagnosis of their warrior. The room was silent during this beautiful and moving moment as they realized just how many local families have been affected by childhood cancer. There wasn’t a dry eye in the house as these families lit candles and guests in the room stood to honor cousins, grandchildren, or siblings who had fought similar battles.

Thank you, Effingham County, for coming together once again. Everyone did their part and worked to raise $168,885 to improve treatment for children with cancer. We can’t wait until 2021!

Mark Myers In Catie's Fund

Savannah’s Catie’s Gathering 2020

Where can you find 550 guests gathered on a Friday evening wearing everything from medical scrubs, to camouflage, to flapper costumes all coming together for the same reason… to raise much needed funds for childhood cancer research? No where other than Savannah’s Catie’s Gathering Event benefiting CURE Childhood Cancer!

Savannah showed up in a big way on Friday, February 7^th at the Kehoe Ironworks building overlooking the river downtown. Coastal Electrics attended as the event’s Title Sponsor. In addition, many other sponsors, in-kind donors, hospital staff, patient parents, volunteers, table hostesses, and guests were in attendance. Everyone enjoyed a cocktail hour while perusing silent auction items and listening to live music provided by local band, Tell Scarlet. Special thanks to Carlson’s Premier Events for helping make the room look beautiful.

The table hostesses chose a theme or color scheme and created elaborate tablescapes and centerpieces. The hostesses certainly weren’t shy on creativity when they came up with themes like When Life Gives You Lemons, Speakeasy, Fight Hard, Do you Wanna find a CURE (complete with Frozen’s Olaf the Snowman), and a Top Gun tribute; The Need For a CURE.

WSAV reporter, Andrew Davis, served as the nights emcee and Silk Road Catering provided guests with a delicious meal. While it was served, they listened to Jenny Wilkins, Co-Founder of Catie’s Fund, interview three Savannah teens: Seth Rousch, Lauren Stephens, and Lily Stuckey. The teens shared the trials of their cancer journies and what’s been happening in their lives over the past twelve months. Each shared some very difficult stories.

When Seth’s disease did not reach remission, he spent months away from home undergoing Car T Cell Therapy and eventually a bone marrow transplant.
Lauren’s relapsed stage-4 neuroblastoma didn’t respond to treatment until after she received genetic testing through Precision Medicine and began a clinical trial drug that targeted her genetic mutation. Managing life and treatment as a new college freshman with cancer was difficult. Lauren experienced a setback in her treatment, but she has a positive outlook for the future.
Lily’s leukemia treatment has not been easy but meeting a friend with the same diagnosis made cancer more tolerable. Lily shared how her friend, Kylie Shiell, who sat with her at the same event in 2019, passed away a few months earlier.

“Kylie did all her big things in life on the 13th of month,” Lily bravely said. “She was born on September 13, diagnosed with leukemia on April 13, and on November 13, 2019, I lost my cancer bestie.”

There wasn’t a dry eye in the house when a tribute video to Kylie was played and Lily presented a special wooden angel that she painted to Kylie’s mother, Ashley, as a gift.

After an exciting live auction with auctioneer, Kenny Williams, guests left with full bellies and full hearts knowing that Savannah once again rallied together to fund better treatments for the community’s youngest cancer fighters.

“One of my favorite parts of the evening was when Jenny began talking with 18-year-old Lauren,” guest Katie Kelley wrote. “She explained how the treatment that finally worked for Lauren, was a result of the Precision Medicine Program that CURE is funding through events like this!”

Thank you, Savannah, for coming together once again. Everyone did their part to raise $140,000 to improve treatment for children with cancer. We can’t wait until 2021!

Mark Myers In Childhood Cancer, Named Funds

A Legacy of Compassion

If you waved at Michael Mugrage, it’s doubtful you would have received a wave in return. More than likely, you’d have gotten a warm smile and one of his signature shakas – a hand gesture residents of Hawaii use to convey the Aloha spirit. It is a sign of friendship, compassion, and respect. Michael was born in Hawaii and spent his first twelve years there before moving to Bluffton, South Carolina.

In Bluffton, Michael grew to become a typical high school teenager. He liked playing Xbox, loved football (he’s a huge fan of Joe Montana and the San Francisco 49ers), was looking forward to getting his driver’s license, and was taking classes to pursue a future career in law enforcement. But he was getting thin, and he started complaining of severe leg pain, abdominal pain, and headaches. A doctor said these were just growing pains, but just days later, Michael was in urgent care with a collapsed lung.

Two hospital transfers via ambulance in a matter of hours and several tests later, he received devastating news. On Halloween 2017, Michael and his mother, Jessica, were told that he most likely had cancer. He had a large mass and would need surgery for a biopsy. The result came back as high-risk (stage 4) alveolar rhabdomyosarcoma (ARMS), an aggressive soft tissue cancer. Although they were fairly new to Bluffton at the time of the devastating diagnosis, their neighbors rallied to their side. The high school principal, teachers, classmates, and several police officers stopped in to visit. Early on, Captain Joe Babkiewicz of the Bluffton Police Department and Michael formed a strong friendship based on their passion for law enforcement and football. Recognizing his qualities of courage, strength, and compassion, Captain Babkiewicz made Michael an honorary Bluffton police officer and designated him a “True Hero.”

Michael endured months of high-intensity chemotherapy treatments, surgery to remove the mass, and the lifetime amount of radiation to his lung and abdomen. For a while, the treatment seemed to work, and Michael was counting down his remaining treatments with hopes of remission and returning to high school. Unfortunately, nine months into treatment, the cancer returned with a vengeance and Michael was given days to live.

Proving his status as a hero, Michael accepted his fate and asked to enroll in a trial to help other children, even after being told it would not help him. He was scheduled for an appointment, but his health deteriorated quickly, leaving him unable to travel for the trial. Michael passed away on August 28, 2018 at the age of 16.

When Michael knew his time on earth was coming to an end, he again showed the compassion for which he had been commended. He told his friends and family that his desire was to see an end to pediatric cancer so that children diagnosed after him would have hope of a long life.

Mark Myers In Catie's Fund

A New Name, Same Impactful Event

Dear friends,

When we think about all of the good that’s been done by those in our community of friends and neighbors through Catie’s Fund over the last twelve and a half years, we’re at a loss for words. You guys have blown us away time after time with your generosity and your heart for kids battling cancer. We are so grateful for each and every one of you and all you have done. You’ve helped us grow and you’ve helped increase the impact we’re able to have.

In fact, you’ve helped us grow so much that changes are ahead for our signature events. Many of you know that our Sisters on a Journey dinners have been a huge success in the communities in which they’re held. Friends and neighbors have gathered together to enjoy a wonderful evening in their community and to make a difference in the fight against childhood cancer. These events have grown so much that it’s time for a change.

We feel that the use of the word sisters in Sisters on a Journey limits us a bit. While these events still have many more women than men in attendance, we don’t ever want to limit interest and participation because of a name. To that end we have brainstormed for many months about a name that would feel more inclusive. We considered and tossed out well over 100 names and have settled on Catie’s Gathering.

To us, the name conjures up an image of a community coming around the table for a good cause – which is exactly what makes these events work. And, there weren’t many things that Catie loved more than gathering with the people she loved most – often with peanuts around the fire pit, at the beach, at home, or wherever her people happened to be.

To encourage continuity between old and new, the Catie’s Gathering logo was designed to mirror the look of the existing Catie’s Fund logo. The designs will also help folks who don’t yet know us see the relationship between Catie’s Fund and Catie’s Gathering. We are truly excited about this change and would love your support as we make the transition.

We’re also hoping to continue growing Catie’s Gathering to new locations and communities. This event is a blast and is easy to reproduce. If you’re interested, please reach out and let us know. You can email us at [email protected] . For more information on Catie’s Gathering, visit www.catiesgathering.org .

Ever so gratefully,

Tre’, Jenny, Izzy, and Chip