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Women Working to End NF

March is Women’s History Month, a time to highlight the contributions of women to events in history and contemporary society. Throughout this month, we’ll showcase women working to solve neurofibromatosis – the scientists, researchers, clinicians, and many others contributing to efforts to find effective treatments for NF.

The women of Synodos for NF2 are starting us off: Vijaya Ramesh, MD (Harvard University), Anat Stemmer-Rachamimov, MD (Harvard University / Massachusetts General Hospital), Cristina Fernandez-Valle, PhD (University of Central Florida), Helen Morrison, PhD (Leibniz Research Institute), and Jaishri Blakely, PhD (Johns Hopkins University the recipient of the 2014 Medical Children’s Tumor Foundation Humanitarian Award) are all collaborating within a ground-breaking consortia to answer big NF questions, accelerate the pace of research and develop new clinical trials.

Want to learn more about Synodos? Watch our video –>




Neurofibromatosis is being studied by women around the globe; from Europe to Australia to South America, and everywhere in between, effective treatments and a cure are being sought by researchers, scientists and medical professionals.

Today, two days before International Women’s Day, we recognize our partners around the globe who, every day, are committed to solving neurofibromatosis: [From top left, clockwise] Sue Huson, MD (Central Manchester University Hospitals NHS Foundation Trust, Saint Mary’s Hospital, UK), Meena Upadhyaya, PhD (University of Cardiff, Wales), Alison Lloyd, PhD (University College, London, UK), Kathryn North, MD (Murdoch Children’s Research Institute, Royal Children’s Hospital, Australia), Helen Morrison, PhD (Leibniz Research Institute, Germany), Laura Papi, MD, University of Florence , IT), Juliana Souza, MD (Federal University Minas Gerais,Brazil), Rosalie Ferner, MD (Guy’s and St. Thomas’ NHS Foundation Trust, London, UK), Miriam Smith, PhD (University of Manchester, UK)


The theme for International Women’s Day (Mar 8) this year was “Make It Happen.” The scientists, researchers, clinicians, and others whom we’re highlighting this month are “making it happen” in the world of neurofibromatosis research, going the extra mile to find effective treatments and a cure.

In 2013, Brigitte Widemann, MD (National Cancer Institute) was awarded the prestigious Von Recklinghausen Award, in recognition of her international leadership in the conduct of cutting edge clinical trials for neurofibromatosis and the effectiveness with which she has worked with the pre-clinical consortium to drive new clinical trials in this disease.







The Children’s Tumor Foundation is proud to have so many passionate, dedicated women focused on solving neurofibromatosis!

Today, we introduce you to Andrea McClatchey, PhD (Massachusetts General Hospital), the woman who runs one of the top labs in the field of NF2 research AND created the first NF2 mouse model!

Dr. McClatchey accepted the CTF Medical Children’s Humanitarian Award at the New England Gala in 2014 and is one of the Young Investigator Award Review Board chairpersons. YIA applications for 2015 are being reviewed now, with the hope that these studies will help answer big questions about NF in the future!




The Children’s Tumor Foundation’s longest running program, the Young Investigator Awards provide funding for two years to young scientists early in their careers, bringing them into the NF field and helping to establish them as independent investigators.

Whether they’re advancing new drugable targets in NF2 tumors or studying new functions of NF1, these female investigators are part of the next generation of NF researchers working to end NF (from left, clockwise): Christine Kivlin (University of Texas, MD Anderson Cancer Center), Christine Chiasson MacKenzie (Harvard University, Massachusetts General Hospital), Shuning He (Harvard University, Dana-Farber Cancer Institute), Clare Malone (Brigham & Women’s Hospital), Mariska van Lier (Netherlands Institute for Neuroscience), and Susana Moleirinho, PhD (Scripps Research Institute).



Today we highlight women from other organizations also leading the fight to end neurofibromatosis. It will take everyone from across the street to around the world giving it their all to one day beat NF.

From left, clockwise, Barbara Franklin (Vice President, Advocure), Allison Clarke (Founder, Flashes of Hope), Kim Bischoff (Executive Director, NF Network), Cindy Hahn (Executive Director, Texas Neurofibromatosis Foundation), and Margaret Anderson (Executive Director, Faster Cures) .





The Children’s Tumor Foundation and the entire NF community are fortunate to have researchers like Margaret (Peggy) Wallace, PhD and Ludwine Messiaen, PhD, focused on solving neurofibromatosis.

Dr. Wallace has been involved in NF research since 1987, when she received her Ph.D. in Medical Genetics from Indiana University School of Medicine. She spent 4 years as a postdoctoral fellow with Dr. Francis Collins, now director of the NIH, at the University of Michigan, and a member of his team that discovered the NF1 gene in 1990. She currently sits on the Children’s Tumor Foundation Board of Directors.

Dr. Messiaen completed her MS and PhD degrees (Molecular biology and cancer) at the University of Ghent in Flanders, Belgium. She was instrumental in the discovery of the schwannomatosis gene, helping to understand schwannoma tumor development and identify new drug treatments.


At the 2011 NF Conference, the Children’s Tumor Foundation established the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration. REiNS was created to achieve consensus within the neurofibromatosis community about the design of future clinical trials, with a specific emphasis on endpoints.
The hope is that these criteria will be incorporated into future clinical trials, standardize the measurement of outcomes and will improve our ability to determine and compare treatment efficacy.

The following women are part of seven working groups that focus on imaging of tumor response; functional, visual, patient-reported, and neurocognitive outcomes; whole-body MRI; and disease biomarkers:

(From the left) Amanda Bergner, MS, CGC, Andrea Baldwin (National Cancer Institute), Betty Schorry, MD (Cincinnati Children’s Hospital), Bonnie Klein-Tasman, PhD (University of Wisconsin-Milwaukee), Cynthia Hingtgen, MD, PhD (Spectrum Health), Dusica Babovic (Mayo Clinic), Eva Dombi (National Cancer Institute), Simone Ardern-Holmes (Children’s Hospital at Westmead, Australia), Jennifer Janusz, PhD (Children’s Hospital Colorado), Karin Walsh, PsyD (Children’s National DC), Kathy Gardner, MD (University of Pittsburgh), Kristy Hardy, PhD (Children’s National DC), Larissa Bilaniuk (The Children’s Hospital of Philadelphia), Mary Anne Tamula, MA (National Cancer Institute), Miriam Bredella (Massachusetts General Hospital), Nicole Ullrich, MD (Boston Children’s Hospital), Laura Schaffner (National Cancer Institute), Pam Wolters, PhD (National Cancer Institute), Sondra Solomon, PhD (University of Vermont), Staci Martin, PhD (National Cancer Institute), Tessa Hadlock (Massachusetts Eye and Ear Infirmary), Tina Poussaint (Children’s Hospital Boston), Vanessa Merker (Massachusetts General Hospital), Joni Doherty (Shohet Ear Associates), and Laura Fayad (Johns Hopkins University)


More superstars in the world of NF research! This evening we bring you: Karlyne Reilly, PhD (Center for Cancer Research), Tena Rosser, MD (Children’s Hospital LA), Staci Martin, PhD (National Cancer Institute and Co-chair NF Forum 2015), and Kate Rauen, MD (University of California – Davis). It is the combined effort and energy from clinicians and researchers coast-to-coast that will help us #EndNF






March may come in like a lion and go out like a lamb, but we want to go out swinging! Over the past 31 days, we’ve showcased the women committed to fighting NF: the researchers, clinicians, scientists and other professionals who have dedicated their time, attention and resources to ending this genetic disorder that leaves us all asking so many questions.

Today, we bring you the women of the science team of the Children’s Tumor Foundation: Annette Bakker, PhD (President and Chief Scientific Officer), Pamela Knight (Clinical Program Manager) and Hyerim Lee, PhD (Science Project Leader).




Together, we can #ENDNF.