From left to right: Maria Granados - co-founder of the Take Part Foundation, Kristin Lashoff - Gala co-chair and director of United4Rare, Kaden Lashoff (child) - “rare warrior,” Stacey Sappington - Take Part donor, Dr. Davis, Michelle Oliva - Nurse Navigator at St. Louis Children’s Hospital.

ST. LOUIS – The Take Part Foundation, a St. Louis-based 501(c)(3) nonprofit that identifies and funds medical research for rare pediatric conditions, has granted an award of $100,000 to St. Louis Children’s Hospital. This donation will help families with the cost of genetic testing, an often expensive but crucial first step toward a diagnosis.

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Following their first successful fundraising gala earlier this spring, founders Maria and Matt Granados presented Take Part’s largest donation to date to hospital representatives at a ceremony on July 9th. The generous contribution was made possible by the following gala sponsors: Sappington Family, Jbloom, Truck Centers Inc, The Opus Group, Summit Rejuvenation, Pace Properties, Enterprise Bank & Trust, My Beloved Bridal, Krishnan Family Foundation, Technology Partners and the Color Room.

Since fall 2023, Take Part has gifted an additional $20,000 to St. Louis Children’s Hospital.

“The Take Part Foundation’s grant to St. Louis Children’s Hospital helps support genetic testing for our patients and has a significant positive impact by providing them with access to essential diagnostic tools, which allows for early detection, personalized treatment and informed decision-making,” said Michelle Oliva, Nurse Navigator at St. Louis Children’s Hospital. “It alleviates the stress of cost-prohibitive testing associated with genetic testing, promoting equity and empowering families to navigate their healthcare journey with enhanced knowledge and support.”

The Foundation was started by the Granados family after witnessing firsthand the challenges in securing a timely diagnosis for their daughter Natalie’s disorder, PYROXD1. Their personal struggles prompted them to create Take Part to support other families navigating similar circumstances.

“Our goal at Take Part is to help people no longer feel sidelined and dependent on others to find answers for their children,” said Matt Granados, co-founder of Take Part. “Through our own experience, we realized millions of families were fighting to receive a diagnosis just like us. We felt called to provide resources and support not only for our daughter but for the many others with similar stories.”

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Half of the 30 million Americans suffering from rare diseases are children. A third of those children will not live to see their fifth birthday.

“At Take Part, we are working tirelessly with researchers, families and the medical community to change these unfortunate statistics and see children receive a diagnosis and any treatment they need to thrive,” said Maria Granados, co-founder of Take Part. “Every family deserves answers, and every child deserves the chance to live a long, happy and healthy life.”

Since its founding in 2021, Take Part has raised more than $500,000 to fund crucial research and close the gap for families who are denied coverage to testing by their insurance. Serving children stuck between diagnosis and prognosis, Take Part strives to be an all-encompassing landing place for anyone trying to find answers for themselves or their loved ones. To learn more about how to “take part” in the lives of children with rare pediatric diseases, please visit https://take-part.org/.

About the Take Part Foundation

The Take Part Foundation is a 501(c)(3) nonprofit dedicated to helping children with rare and undiagnosed diseases thrive. Too often, the research needed to advance life-altering therapies for children with rare conditions lacks adequate funding. Take Part funds research, provides resources for rare and undiagnosed families to better tell their stories and assists with access to genetic testing needed for a diagnosis. The nonprofit was founded by Matt and Maria Granados, parents of Natalie, who suffers from a rare genetic disorder, PYROXD1. The foundation empowers families of children with rare diseases, allowing anyone to “take part” in fighting for what’s possible. Learn more athttps://take-part.org/.

About St. Louis Children’s Hospital and BJC HealthCare

St. Louis Children’s Hospital is part of BJC HealthCare, which serves the East Region of BJC Health System, one of the largest nonprofit health care organizations in the United States. BJC facilities deliver extraordinary care to urban, suburban, and rural communities in greater St. Louis, southern Illinois, and southeast Missouri, as well as to people from across the country and around the world at its academic hospitals Barnes-Jewish and St. Louis Children’s Hospitals. BJC’s nationally recognized academic hospitals are affiliated with Washington University School of Medicine. Services provided include inpatient and outpatient care, primary care, community health and wellness, workplace health, home health, community mental health, rehabilitation, long-term care, and hospice. To learn more, visit BJC.org, Facebook, Twitter, Instagram, and LinkedIn. As one of the largest employers in Missouri, BJC Health System comprises 24 hospitals and hundreds of clinics and service organizations and operates in two distinct regions, serving patients in its West Region through Saint Luke’s Health System.

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