Check out the video messages below from Dr. Mullighan and Dr. Walsh and learn more about our research partnerships to support finding better outcomes for pediatric leukemia and mucormycosis patients.
February 3, 2017
Henry Schueler 41 & 9 Foundation Presents $100,000 Check to Dr. Charles Mullighan During Presentation at St. Jude Children’s Research Hospital
On January 31, 2017, Matt Schueler, Founder of the 41 & 9 Foundation, and Board Member Gianna Funkhouser, met with Dr. Charles Mullighan and his team of researchers and scientists at St. Jude Children’s Research Hospital in Memphis, TN. They were joined for a presentation by the Kuchta family, Rusty, his wife Jean, and daughters Molly, 17 and Maddie, 15, of a $100,000 check to Dr. Mullighan for his continued research projects involving leukemias.
Molly Kutcha, like Henry Schueler, was diagnosed with hypodiploid acute lymphoblastic leukemia (HALL) as a teenager but thanks to advancements in the understanding and treatment of this previously little understood subtype of ALL, has successfully completed three years of chemotherapy and is now in remission. The Kuchta family raised $40,000 at the “MollyStrong” golf outing this year, which they generously donated to the 41 & 9 Foundation. The joint gift of $100,000 to St. Jude’s was the Foundation’s single largest research donation made to date.
A portion of Dr. Mullighan’s research, led by post-doctoral fellow, Evan Comeaux, was recently presented at the American Society of Hematology conference, the largest blood cancer meeting in the world, and will be published later this year.
The Henry Schueler 41 & 9 Foundation is proud to be making a difference in supporting research that is truly impacting lives like Molly’s.
But our work is not done. Please join us for our Cycle for a Cure Ride from Chicago to Milwaukee on June 10, 2017. Sign up is easy and the bike ride is open to adult riders of all levels. Click here to register.
and commit to raising $300 or more to support your ride. Help the 41 & 9 Foundation continue to fund research that impacts people’s lives at a time when they need it the most.
Be proud of your past support and know your money is being used in groundbreaking research at the world’s premier and only Pediatric Comprehensive Cancer Center-St. Jude Children’s Research Hospital.
Henry would be very proud that we are continuing our mission to find out why this happened to him so we can prevent it from happening to others.
NORD 2016 Rare Impact Award
On May 17, 2016, Matt Schueler, founder of the Henry Schueler 41 & 9 Foundation, presented a NORD 2016 Rare Impact Award to Dr. Bernie Zeiher of Astellas for its breakthrough drug, Cresemba. Cresemba has been effectively used to treat mucormycosis, a serious, life-threatening, invasive fungal infection those with weakened immune systems often contract. These awards are provided to recognize individuals, organizations, advocates and companies that are moving us forward in the fight against rare diseases. Watch Matt’s introduction and Dr. Zeiher’s award acceptance here by scrolling to the 28-minute mark.
Thanks to our donors’ support through generous contributions, the Henry Schueler 41 & 9 Foundation supports groundbreaking pediatric leukemia and fungal infection research that is critical to conquering the medical challenges that those affected face. We have partnered with leading researchers and institutions to ensure a life-changing path for the future. Check out some of their research initiatives and successes below.
October 11, 2017 Letter from Dr. Thomas Walsh to the Foundation:
“Training and education of health care workers in mucormycosis is a key component of my mission as the Henry Schueler Foundation Scholar.
I represented the US and the Henry Schueler Foundation yesterday (10-10-17) as the only American physician-scientist in a two-day course on invasive fungal infections in children and neonates sponsored by the European Confederation for Medical Mycology (ECMM) and the Federation of European Microbiology Societies (FEMS). The first day was devoted to mycoses in children and the second day to neonates.
I prepared and gave a new lecture on risk factors and clinical manifestations of neonatal fungal infections. One-half of my lecture was devoted to neonatal mucormycosis, which is different in infants than in older children. The lecture was well received and my contributions to the discussions in other sections of the course were enthusiastically welcomed. Two of my former mentees, Drs. Emmanuel Roilides and Andreas Groll, participated in the first day. You know Dr. Roilides from the first Henry Schueler Foundation Forum in Mucormycosis.
The meeting was highly successful and led to potentially productive research collaborations for our work in mucormycosis.
From a logistical standpoint, as these are rare diseases, the budget was limited to reimbursement for hotel expenses. I therefore used my United frequent flyer mileage for the air travel and justified my time to Weill Cornell from support by the Schueler Foundation.
Enclosed are some of the links for the courses and attached are my lecture abstract, as well as the Abstract and Program for the neonatal course.”
Comprehensive Analysis of Hypodiploid Acute Lymphoblastic Leukemia (“HALL”)
In conjunction with Dr. Stephen Hunger, (Chief of the Division of Oncology and Director Center for Childhood Cancer Research at The Children’s Hospital of Philadelphia, PA) and Dr. Charles Mullighan (St. Jude’s Research Hospital) and other members of the National Children’s Oncology Group, The Henry Schueler 41 & 9 Foundation helped sponsor the most comprehensive analysis of Hypodiploid ALL (“HALL”) ever performed.
HALL is rare, with only 124 known samples existing in the U.S., and the project led to a gene analysis of samples from patients with three different forms of this rare leukemia to confirm genetic differences that could lead to new treatments.
The findings also provided the first evidence of the genetic basis for high-risk leukemia and results appeared in the January 2013 online edition of the scientific journal Nature Genetics.
“The cure rate for Hypodiploid ALL is only about half that obtained overall for children with ALL. The findings of this study are very important and have the potential to impact how this high-risk subset of childhood ALL is treated,” said Stephen Hunger, M.D., chair of the Children’s Oncology Group ALL committee and one of the paper’s co-authors.
“This study grew out of the efforts of Hank Schueler, a teenager who died from Hypodiploid ALL. He wanted to find ways to help treat other children with this type of leukemia. After he passed away, his parents established a Foundation to support research in Hypodiploid ALL. We thought that one way to do this was to conduct the genomic analyses reported in this paper. These findings would not have been possible without Hank’s idea and without support from the Schueler family.”
You can view the comprehensive press release St. Jude’s Children’s Hospital created with more on the study and its outcome here.
We are continuing to support this study at St. Jude’s. The Foundation has agreed to fund the second installment of a two-year clinical research technician position (the “Henry Schueler 41 & 9 Senior Research Technologist”) at St. Jude’s where they will assist senior researchers Dr. Mullighan and Evan Comeuax, Ph.D., as they conduct future studies that will provide new insights into the induction and development of leukemia and identify new therapeutic strategies for Hypodiploid ALL.
Research Support for Mucormycosis (Zygomycosis)
Zygomycosis, also known as Mucormycosis, is a disease that attacks cancer patients when their host defenses are compromised by treatment and can be fatal. Through our donors’ generosity, the Foundation was able to publish in 2012 (Oxford University Press) a medical and scientific supplement on Zygomycosis that reached almost 12,000 worldwide medical subscribers.
The Henry Schueler 41 & 9 Foundation sponsored the first international conference on Mucormycosis in Chicago in 2010, which generated this research and paid for the subsequent publication after its acceptance by the prestigious journal, Clinical Infectious Disease (“CID”). It is entitled “Advances Against Mucormycosis: A Tribute to the Memory and Courage of Hank Schueler” and can be viewed here.).
The Supplement was edited by Dr. Thomas Walsh, the Director of the Transplantation-Oncology Infectious Diseases Program at Cornell University Medical Center (Weill-Cornell Medical College and New York Presbyterian Hospital) in New York. It is widely held as the most comprehensive and authoritative body of research on the subject of Mucormycosis in the world.
In 2013, Dr. Walsh was also named as the Henry Schueler 41 & 9 Foundation Scholar. This title accompanies all of his correspondence, manuscripts, and other publications and confers greater public awareness of the Henry Schueler 41 & 9 Foundation and assists Dr. Walsh in pursuing the Foundation’s mission in Mucormycosis. His mission and ours is to develop new strategies for diagnosis, treatment, and prevention of invasive Mucormycosis; increase public awareness of the epidemiology, morbidity and mortality of invasive Mucormycosis; and to provide expert outreach assistance to patients with Mucormycosis, their families, and their physicians.