Natalí Dafne Flexer Foundation: A story of grief turned into action

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Edith Grynszpancholc speaks with conviction. She has learned to turn her pain into a driving force for change.

Her work is deeply personal, and she's fully committed to fighting childhood cancer in her native Argentina. It's a mission born from a painful personal experience and one that has touched the lives of thousands of children.

Just over three decades ago, her world changed forever with the loss of her 9-year-old daughter, Natalí, to osteosarcoma, the most common childhood bone tumor. 

As a result of Natalí’s illness, Edith realized that everything she and her family had learned about the disease and its treatment could help many others. She felt she had encountered a need that could — and should — be addressed, especially for families who, unlike hers, faced socioeconomic limitations. To honor her daughter’s memory and respond to that need, she created new pathways of support for families who once faced only uncertainty after receiving a similar diagnosis.

“I believe that any child diagnosed with cancer deserves the best possible quality of life, so it's important to give parents every opportunity to ensure that their child has effective access to everything needed for healing — and to give them the certainty that they did everything they possibly could.”

Through her contact with families, Edith learned firsthand about additional challenges they faced during treatment. With the support of friends, she founded the Natalí Dafne Flexer Foundation in November 1994.

The organization, led by Edith in her role as president, promotes access to treatment and care for children and young people with cancer. Their interventions take place at the local, national, and regional levels. This capacity has been strengthened by the guidance and training they have received through the St. Jude Global Alliance, an international community led by St. Jude Children’s Research Hospital®. The alliance partners with more than 400 member institutions from more than 80 countries, developing global, national, regional and hospital-based initiatives to advance care for children with cancer and other catastrophic diseases.

“The St. Jude Global Alliance helps us expand our work with a deeper understanding of what’s truly needed in pediatric oncology,” said Edith, who has visited St. Jude in Memphis, Tennessee, for training with ALSAC, the fundraising and awareness organization for St. Jude. “Walking alongside St. Jude helps us improve across several areas of our work.”

Today, the foundation operates 10 locations linked to major hospitals across Argentina. Each month, it supports around 1,200 families in Buenos Aires and throughout all 23 provinces, where nearly 80% of children with cancer depend on public health care. 

Despite the foundation’s efforts to improve cancer care, significant challenges persist, including inequity in access to treatment. “We must work tirelessly to ensure that the chances of cure and survival are the same for all children in Argentina, in every corner of the country,” she said.

Globally, Argentina ranks among countries with medium-high cancer incidence in children and adults. In Latin America, it’s fifth in frequency. More than 60 percent of the children who are diagnosed with cancer in the country will survive. That's slightly lower than in the U.S., where St. Jude has pioneered treatments that have helped raise the overall childhood cancer survival rate from 20% to more than 80% since the hospital opened more than 60 years ago.

Beyond treatment

Andrea Ayoroa, who coordinates the foundation’s social programs, sees the families’ struggles up close. Her team works to ensure patients receive timely care and understand their rights. "Families already have so much to deal with, so we try to make information accessible,” Andrea said. 

One of those patient rights is government assistance or coverage from the appropriate health‑care entities to pay for travel and lodging during treatment.

“We constantly work with vulnerable populations, families not only facing illness but also unemployment or poverty,” Andrea said, adding that all foundation services are free. When needed, they also provide supportive medications and other resources throughout treatment.

What began as Edith’s idea to raise awareness and share information has grown far beyond its original purpose. Today, the foundation provides support for strengthening pediatric oncology in Argentina, including improvements to hospital infrastructure and training for psychosocial professionals across Latin America. It also collaborates in clinical research and distributes free informational materials in Spanish for patients, parents and siblings to help them through treatment.

When asked about her greatest dream, Edith paused, then admitted that, despite already supporting every pediatric cancer patient in the country, she hopes to see this become a reality throughout all Latin America. “St. Jude [Global Alliance] is an example because we see how countries with extreme poverty make progress, and that gives us hope to say, ‘We’ll achieve what we set out to do.’”

She vows to keep fighting: “I could never say I’ll be satisfied because every child in the world deserves a cure.”

Helping children be children again

At the Natalí Dafne Flexer Foundation, playrooms and art workshops provide children with support that goes beyond medical care. Through recreational and educational programs supported by more than 200 volunteers, the foundation offers personalized tutoring in spaces designed to restore a sense of freedom and choice for patients. 

“Helping a child be a child, beyond the illness. We nurture that desire in every patient,” said Gloria García Goya, who leads the recreational and educational program.

Support continues even after treatment through a group of young people called Generation Life. “We do it to make sure they have resources and skills to thrive. Many live with the fear of relapse, and that’s a constant challenge,” said Teresa Méndez, head of the psychology department.

A legacy in the making  

Edith’s legacy is woven through 30 years of service that has rallied thousands across Argentina, along with companies and global institutions. “I always remember a saying by Descartes: ‘A good that we have done gives us an internal satisfaction that is the sweetest of all the passions,’” she reflected with her trademark conviction. “I believe the foundation will continue beyond me, and that gives me peace knowing we’ve helped so many.”

The mission of St. Jude Global is to improve the survival rates of children with cancer and other catastrophic diseases worldwide through the sharing of knowledge, technology and organizational skills.

For more information about the Natalí Dafne Flexer Foundation, visit fundacionflexer.org