Believe Magazine Summer 2024
Believe Magazine looks behind the scenes at Children’s National Hospital. Hear from our pediatric leaders and patients who believe in healthy futures. See how generous philanthropy makes them possible!
“The idea is to write it so that people hear it, and it slides through the brain and goes straight to the heart.” - Maya Angelou
About Me
Writing is my passion. I enjoy sharing the stories of people and organizations making an impact on the world.
I graduated from the University of Montevallo in 2014 with a BA in Mass Communication.
My Latest Work
Helping Cierra Thrive as a Mom
Cierra works in childcare. When she was pregnant with Drake, she knew the first few months of motherhood would be challenging — and they were. She had anxiety, depression and felt like she was letting her family down. Meals, bath time and getting Drake to bed created big challenges. She felt self-conscious asking for help.
“I felt like my world was crashing. Every therapist I called was busy,” Cierra explained.
When Drake vomited a strange color, she brought him to the Children’s National Emer
“I felt like my world was crashing. Every therapist I called was busy,” Cierra explained.
When Drake vomited a strange color, she brought him to the Children’s National Emer
Unlocking the Secrets of our DNA
“My high school science teacher partnered with Yale University to give us a chance to work in real genetics labs,” says Christina Grant, MD, PhD. “I remember thinking, wow, this is awesome.”
That experience set Dr. Grant on her path to medical school. A clinical genetics rotation introduced her to a whole new world of discovery. Today she is a medical geneticist at the Children’s National Rare Disease Institute. Her research changes the lives of children and families.
One of Dr. Grant’s patien
That experience set Dr. Grant on her path to medical school. A clinical genetics rotation introduced her to a whole new world of discovery. Today she is a medical geneticist at the Children’s National Rare Disease Institute. Her research changes the lives of children and families.
One of Dr. Grant’s patien
Omid Conquers Fear with Music
Neil Aleger, DDS, a dental fellow at Children’s National, builds trust with his young patients by acknowledging any fears they might have while in the dental chair. Even the simplest procedure can involve anxiety-producing noises and feelings.
Omid, at age 8 had 10 procedures in one year. "He's always had a hard time at the dentist,” says his mom, Zeinab. “As a parent, it’s really painful to watch.”
Dr. Aleger had a plan. He asked Omid about his favorite books, cartoons and music, cre
Omid, at age 8 had 10 procedures in one year. "He's always had a hard time at the dentist,” says his mom, Zeinab. “As a parent, it’s really painful to watch.”
Dr. Aleger had a plan. He asked Omid about his favorite books, cartoons and music, cre
Care for Mila and Me
My daughter Mila is a feisty, caring little girl. She loves music, loves to dance and gives the best hugs.
Mila wasn’t breathing when she was born. It took doctors an hour to revive her. Five days later, Mila flew to Children’s National Hospital where she spent eight months in the Neonatal Intensive Care Unit (NICU). It was the longest eight months of my life.
Compassionate care at Children’s National gave me hope. The nurses were like family. They listened and talked to me. I would a
Mila wasn’t breathing when she was born. It took doctors an hour to revive her. Five days later, Mila flew to Children’s National Hospital where she spent eight months in the Neonatal Intensive Care Unit (NICU). It was the longest eight months of my life.
Compassionate care at Children’s National gave me hope. The nurses were like family. They listened and talked to me. I would a
Compassion Brings Smiles
My daughter Jocelynne is a ball of sunshine. She loves animals and her siblings spoil her. She’s a thriving toddler today because of Children’s National Hospital.During my 20-week prenatal anatomy scan, I learned that Jocelynne had hydronephrosis. An excess build-up of urine caused her kidneys to swell. My pregnancy was now high-risk.Urologist Tanya Davis, MD, was truly a blessing in our lives. I spoke with her twice during my pregnancy. After every conversation, she would tell me to feel free t
Childhood Ewing sarcoma survivor on a mission to inspire others
Kenny Bontz has faced his share of challenges in life, but these obstacles helped shape him into the man that he is today, and set him on a path to inspire others.
When Kenny was 19 years old and working as a printing machine operator, a coworker dropped a 3,000 lb. roll of paper on him, crushing him into a wall.
“I got an X-ray to see if there were any broken bones, and they did a biopsy and diagnosed me with osteomyelitis, which is a bone infection,” Kenny explained. That was a misdiagnosis.
When Kenny was 19 years old and working as a printing machine operator, a coworker dropped a 3,000 lb. roll of paper on him, crushing him into a wall.
“I got an X-ray to see if there were any broken bones, and they did a biopsy and diagnosed me with osteomyelitis, which is a bone infection,” Kenny explained. That was a misdiagnosis.
CureSearch and funding partners award $1.5M for osteosarcoma research
Dr. Patrick Grohar receives Fight Osteosarcoma Together Super Grant to address critical, unmet need in pediatric osteosarcoma treatment
Bethesda, Md. – June 6, 2023 – CureSearch for Children’s Cancer announced today a three-year, $1.5 million grant to Patrick Grohar, MD, PhD, of Children’s Hospital of Philadelphia to develop a new targeted treatment approach for pediatric osteosarcoma, an aggressive form of bone cancer.
The award – the Fight Osteosarcoma Together Super Grant – is a joint fundi
Bethesda, Md. – June 6, 2023 – CureSearch for Children’s Cancer announced today a three-year, $1.5 million grant to Patrick Grohar, MD, PhD, of Children’s Hospital of Philadelphia to develop a new targeted treatment approach for pediatric osteosarcoma, an aggressive form of bone cancer.
The award – the Fight Osteosarcoma Together Super Grant – is a joint fundi
CureSearch to fund new study for aggressive pediatric bone cancer
Bethesda, Md. – May 8, 2023 – CureSearch for Children’s Cancer, a national nonprofit on a mission to end childhood cancer by driving targeted and innovative research in an accelerated time frame, announced today it will fund a novel project aimed at developing new therapies for osteosarcoma, an aggressive form of bone cancer.
Kristen VanHeyst, DO of University Hospitals Rainbow Babies & Children’s Hospital’s Angie Fowler Adolescent & Young Adult Cancer Institute, received a CureSearch Young Inv
Kristen VanHeyst, DO of University Hospitals Rainbow Babies & Children’s Hospital’s Angie Fowler Adolescent & Young Adult Cancer Institute, received a CureSearch Young Inv
CureSearch to fund new cutting-edge study for rare blood cancer in children
Project will examine how and why children develop AML, the leading cause of childhood leukemia mortality
Bethesda, Md. – April 20, 2023 – CureSearch for Children’s Cancer, a national nonprofit on a mission to end childhood cancer by driving targeted and innovative research in an accelerated time frame, announced today it will fund an innovative project to study acute myeloid leukemia (AML), a rare blood cancer in children.
Elvin Wagenblast, PhD, of The Tisch Cancer Institute at Mount Sinai, re
Bethesda, Md. – April 20, 2023 – CureSearch for Children’s Cancer, a national nonprofit on a mission to end childhood cancer by driving targeted and innovative research in an accelerated time frame, announced today it will fund an innovative project to study acute myeloid leukemia (AML), a rare blood cancer in children.
Elvin Wagenblast, PhD, of The Tisch Cancer Institute at Mount Sinai, re
Childhood cancer survivor hopes to bring ‘Little Miracles’ to kids with cancer through Ultimate Hike
As an infant, Lindsey Grubbs did what most babies do. She played, she napped, she cried, but she was dealing with something far from normal.
“I was a baby, so of course I didn’t fully know what was happening with my health,” she said. “My mom has even told me that I would pretend to give syringes of medicine to my baby doll while I was going through my own treatments. I knew I felt sick, but for me it was normal.”
At 12 months old, Lindsey was diagnosed with stage 4 hepatoblastoma, a type of c
“I was a baby, so of course I didn’t fully know what was happening with my health,” she said. “My mom has even told me that I would pretend to give syringes of medicine to my baby doll while I was going through my own treatments. I knew I felt sick, but for me it was normal.”
At 12 months old, Lindsey was diagnosed with stage 4 hepatoblastoma, a type of c
CureSearch to fund Phase I clinical trial for pediatric brain cancer
Clinical trial aims to bring new therapies to childhood brain tumors with low survival rates
Bethesda, Md. – April 3, 2023 – CureSearch for Children’s Cancer, a national nonprofit on a mission to end childhood cancer by driving targeted and innovative research in an accelerated time frame, announced today that it will fund a Phase I clinical trial to bring new therapies to pediatric brain cancer patients, including those with limited or no treatment options.
The trial is led by David Munn, MD
Bethesda, Md. – April 3, 2023 – CureSearch for Children’s Cancer, a national nonprofit on a mission to end childhood cancer by driving targeted and innovative research in an accelerated time frame, announced today that it will fund a Phase I clinical trial to bring new therapies to pediatric brain cancer patients, including those with limited or no treatment options.
The trial is led by David Munn, MD
From the mountains to the aisle: CureSearch Ultimate Hikers find love on the trail
James and Elizabeth Gunnett have participated in Pacific Crest Trail Ultimate Hike since 2018, raising critical funds to support the next breakthrough in childhood cancer.
The two struck up quite the conversation out on the trail for their very first hike. So much so, they ended up hiking a few extra miles together that day! Little did they know, that very first trek on the Pacific Crest Trail would lead to a walk down the aisle three years later!
2018 was a difficult year for James. He lost h
The two struck up quite the conversation out on the trail for their very first hike. So much so, they ended up hiking a few extra miles together that day! Little did they know, that very first trek on the Pacific Crest Trail would lead to a walk down the aisle three years later!
2018 was a difficult year for James. He lost h
CureSearch to lead impact study on cost, treatment benefits of molecular testing for childhood cancer patients
Bethesda, Md. – January 18, 2023 – , a national nonprofit dedicated to ensuring that every child diagnosed with cancer has a safe and effective treatment option, will lead a healthcare economic study to determine how molecular testing could benefit treatment decisions for pediatric cancer patients.
Cancer is the number one disease killer in children in the US. Although survival rates for the most common types of childhood cancer have greatly increased in recent years, there has been little impr
Cancer is the number one disease killer in children in the US. Although survival rates for the most common types of childhood cancer have greatly increased in recent years, there has been little impr
Support kids like Caden this holiday season
In November of 2020, Shannon Marshall heard the heartbreaking words that more than 15,000 families in the US hear every year, “Your child has cancer.”
Her son Caden was diagnosed with B-cell leukemia. At just 10 years old, he spent weeks in the hospital enduring toxic chemotherapy. At one point, he was getting the highest dose of methotrexate and had to be monitored around the clock.
“The side effects were grueling,” Shannon explained. “I had to watch my little boy suffer from nausea, extreme
Her son Caden was diagnosed with B-cell leukemia. At just 10 years old, he spent weeks in the hospital enduring toxic chemotherapy. At one point, he was getting the highest dose of methotrexate and had to be monitored around the clock.
“The side effects were grueling,” Shannon explained. “I had to watch my little boy suffer from nausea, extreme
CureSearch announces new funding commitment to childhood cancer research projects
Projects will develop new treatments for neuroblastoma, high-grade gliomas, including DMG, and more
Bethesda, Md. – February 15, 2022– CureSearch for Children’s Cancer, a national nonprofit with a mission to end childhood cancer by driving targeted and innovative research with measurable results in an accelerated time frame, announced today it will fund seven innovative, translational research projects beginning in 2022. Projects will address a wide range of tumor types including intracranial g
Bethesda, Md. – February 15, 2022– CureSearch for Children’s Cancer, a national nonprofit with a mission to end childhood cancer by driving targeted and innovative research with measurable results in an accelerated time frame, announced today it will fund seven innovative, translational research projects beginning in 2022. Projects will address a wide range of tumor types including intracranial g
Newly-funded CureSearch and SebastianStrong Foundation project aims to develop immunotherapy treatment for pediatric leukemia
Newly-funded CureSearch and SebastianStrong Foundation project aims to develop immunotherapy treatment for pediatric leukemia
Novel immunotherapy approach could improve survival rate for acute myeloid leukemia
Bethesda, Md. – September 15, 2021 – CureSearch for Children’s Cancer, in partnership with the SebastianStrong Foundation, has awarded a three-year, $270,650 CureSearch Young Investigator grant to University of Colorado Cancer Center member Mark Kohler, MD, PhD, who will develop a new tr
Novel immunotherapy approach could improve survival rate for acute myeloid leukemia
Bethesda, Md. – September 15, 2021 – CureSearch for Children’s Cancer, in partnership with the SebastianStrong Foundation, has awarded a three-year, $270,650 CureSearch Young Investigator grant to University of Colorado Cancer Center member Mark Kohler, MD, PhD, who will develop a new tr
Childhood cancer survivor working to bring new therapies to kids like him
As a pediatric emergency medicine physician, Kim Giusto is no stranger to the symptoms of acute lymphoblastic leukemia (ALL), an aggressive form of blood cancer, in children. In 2013, her professional life became her personal life. She noticed her son, Cole, had been sick for five days with cold symptoms, a fever, and a rash known as petechiae.
“I also noticed he had gained some weight and was breathing a little fast, which concerned me that something more serious was going on,” said Kim. “I br
“I also noticed he had gained some weight and was breathing a little fast, which concerned me that something more serious was going on,” said Kim. “I br
Scientific Advisory Council Spotlight: Elizabeth Fox, MD
With the expert leadership of the CureSearch Scientific Advisory Council (SAC), which sets the academic priorities for research initiatives and evaluates projects on scientific merit, CureSearch funds projects with commercial potential and the ability to quickly reach patients who need new and better treatment options.
The SAC includes best-in-class pediatric oncologists, such as Elizabeth Fox, MD, senior vice president of clinical trials administration at St. Jude Children’s Research Hospital.
The SAC includes best-in-class pediatric oncologists, such as Elizabeth Fox, MD, senior vice president of clinical trials administration at St. Jude Children’s Research Hospital.
175 miles in seven days – hiker treks across the country for kids with cancer
Ryan Sickler is going the extra mile to tell children’s cancer to “take a hike” by taking on all seven 2022 CureSearch Ultimate Hikes to raise funds and awareness for better childhood cancer treatments.
The CureSearch Ultimate Hike is the nation’s only endurance event dedicated to childhood cancer. Hikes take place throughout the year on some of the country’s most beautiful trails in Texas, the Carolinas, Virginia, California, Minnesota and Arkansas.
In 2019, Ryan laced up his boots for his fi
The CureSearch Ultimate Hike is the nation’s only endurance event dedicated to childhood cancer. Hikes take place throughout the year on some of the country’s most beautiful trails in Texas, the Carolinas, Virginia, California, Minnesota and Arkansas.
In 2019, Ryan laced up his boots for his fi
Ultimate Hiker takes on famous pilgrimage for childhood cancer research
How far would you hike for children with cancer? For Steve Hay, it’s 165 miles.
More than 17,000 children in the US are diagnosed with cancer every year and most current standard treatments were approved before 1990. There is an urgent need for new, safe, effective treatments.
Through the CureSearch Create Your Own Adventure program, Steve went the extra mile – 165 miles to be exact – to raise funds for the development of new treatments for children with cancer. This was Steve’s first CureSear
More than 17,000 children in the US are diagnosed with cancer every year and most current standard treatments were approved before 1990. There is an urgent need for new, safe, effective treatments.
Through the CureSearch Create Your Own Adventure program, Steve went the extra mile – 165 miles to be exact – to raise funds for the development of new treatments for children with cancer. This was Steve’s first CureSear
Volunteer, mother of childhood cancer survivor to host Northern Colorado CureSearch Walk
CureSearch funds next-generation childhood cancer research, and that wouldn’t be possible without our dedicated volunteers who work every day to fundraise and bring awareness to the urgent need for new treatments for the kids who need them most.
In 2018, Kathleen Sullivan and her family’s world turned upside down. Her 17-year-old daughter, Sherilyn, was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the blood that starts in the bone marrow and spreads to the bloodstream. Kathlee
In 2018, Kathleen Sullivan and her family’s world turned upside down. Her 17-year-old daughter, Sherilyn, was diagnosed with acute lymphoblastic leukemia (ALL), a cancer of the blood that starts in the bone marrow and spreads to the bloodstream. Kathlee
Mother-daughter team wants to pay it forward at CureSearch Ultimate Hike
Angie Voloch knows first-hand what it’s like to watch a child endure toxic chemotherapy treatments. On November 4, 2014, after a year of misdiagnoses, her daughter Taylor was diagnosed with a pilocytic astrocytoma – a slow growing tumor that usually does not spread to surrounding brain tissue.
“The next morning, she had to undergo a 12-hour surgery to remove the tumor,” said Angie. “In 2016, the tumor had regrown closer to the brainstem and continued to grow, despite a year of chemo.”
Taylor h
“The next morning, she had to undergo a 12-hour surgery to remove the tumor,” said Angie. “In 2016, the tumor had regrown closer to the brainstem and continued to grow, despite a year of chemo.”
Taylor h
Mom and childhood cancer advocate shares daughter’s story on anniversary of diagnosis
Mom and childhood cancer advocate shares daughter’s story on anniversary of diagnosis
Fourteen years ago today, Stacy Distefano heard the words that more than 17,000 parents in the U.S. hear every year – “your child has cancer.”
On April 29, 2008, Stacy took her four-year-old daughter, Avery, to the pediatrician after weeks of stomach problems and complaints of a headache. Bloodwork showed that she was dehydrated, so Avery was sent to the ER for IV fluids.
“The ER doctor ordered an MRI just t
Fourteen years ago today, Stacy Distefano heard the words that more than 17,000 parents in the U.S. hear every year – “your child has cancer.”
On April 29, 2008, Stacy took her four-year-old daughter, Avery, to the pediatrician after weeks of stomach problems and complaints of a headache. Bloodwork showed that she was dehydrated, so Avery was sent to the ER for IV fluids.
“The ER doctor ordered an MRI just t
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