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Texas Neurofibromatosis Foundation - 1

RESEARCH NEWS

Texas NF through our annual Golf Tournament has awarded the following grants.

2016 - $44,081 funded to Dr. Laura Klesse of Children’s Medical Center Dallas and University of Texas Southwestern Medical Center for her research titled “Cardiovascular Abnormalities in Pediatric Patients with Neurofibromatosis Type 1." $19,543 funded to Keila Torres, MD, PhD of The University of Texas MD Anderson Cancer Center for her research titled  “Evaluation of PARP Inhibition in Malignant Peripheral Nerve Sheath Tumors”.

2015 - $20,000 funded to Dr. Steve Richards with Texas Scottish Rite Hospital for his research on tibial pseudarthrosis. $30,000 funded to Dr. Keri Smith with The University of Texas Health Science Center at Houston for her research titled "Molecular Modeling of Neurofibromatosis Response to mTOR Inhibition to Uncover Targets for Treatment." 

2014 - $50,000 funded to Kristine Vogel, Ph.D. - Assistant Professor, Cellular and Structural Biology The University of Texas Health Science Center at San Antonio . Project: DNA Damage Repair and Disease Severity in Neurofibromatosis Type 1.

2013 - $20,000 funded to Alice Ann Holland, Ph.D. with Children's Medical Center Dallas. Project: Health Correlates of Bullying in Pediatric Neurofibromatosis.

2013 - $20,000 funded to Dr. Lu Le with UT Southwestern Medical Center.  Project: Identifying Novel Therapeutics for Malignant Peripheral Nerve Sheath Tumors.  

2012 - $20,000 funded to Dr. Laura Klesse, with  Children's Medical Center and UT Southwestern Medical Center.  Project: Neurofibromatosis Associated Plexiform Neurofibromatosis Analysis for Novel Therapeutic Targets.

2012 - $15,000 funded to Dr. Dina Chelouche Lev with the University of Texas MD Anderson Cancer Center. Project: The Role of HDAC8 as a novel anti-MPNST therapeutic target. 

Congressionally Directed Medical Research Programs Fiscal Year 2011 Annual Report

2011 - $30,000 Sponsored a Drug Discover Initiative award through CTF to Dr. David Largaespada, Masonic Cancer Center, University of Minnesota.  Project: Combinatorial signal pathway inhibition in a novel model of high grade neurofibroma development.

2010 - $45,000 Partnered with CTF to fund a Young Investigator Award to Dr. Jody Fromm, Harvard Medical School/Brigham Women's Hospital. Project: To determine the therapeutic effects of combined sunitinib and rapamycin treatment on MPNST's.

2009 - $47,000 Awarded to Dr. Ian McCutcheon, Dr. John Slopis and Dr. Daniel Cahill at the University of Texas MD Anderson Cancer Center. Project Title: Genotype-Phenotype correlation predicting malignant tumors in NF 1

Help us FUND RESEARCH


PARTICIPATE IN RESEARCH

Impacts of Social Media on Self-Esteem Among Individuals with Neurofibromatosis

WHO CAN PARTICIPATE: Adult patients ( 18 and older) with NF1 or NF2

OBJECTIVE: Understand the effect of social media and support groups on self-esteem and feelings of isolation

CONTACT: To participate or obtain more information, please contact Rivka Glaser, Ph.D., at 448-394-9644 or rglaser@stevenson.edu.

Click here for more information and to participate in this research study.

NF1 Associated Plexiform Neurofibromas Survey Project

WHO CAN PARTICIPATE: Parents of children between the age of 8 and 17 with NF1 and a plexiform tumor

OBJECTIVE: Understand the health-related quality of life of individuals with NF-1 associated plexiform neurofibromas and to learn about their experiences

CONTACT: To participate or obtain more information, please contact Zabin Patel, at 312-503-3424 or z-patel@northwestern.edu.

Click here for more information about this research study.

Development of a Child and Young Adult Neurofibromatosis Type 1 Quality of Life Measure

WHO CAN PARTICIPATE: Young Adults with NF1 (18-25), Children with NF1 (5-17), and Parents of children with NF1 (5-25)

OBJECTIVE: Develop a Neurofibromatosis Type 1 (NF1) quality of life instrument to better understand and be able to measure how having NF1 affects people’s health and well-being

CONTACT: To participate or obtain more information, please contact Kavitha Nutakki (knutakki@iupui.edu) or at (317) 278-0534.

Click here for more information about this research study.

Coping with Pain: An Active Approach

WHO CAN PARTICIPATE: Patients age 16 to 34 with NF1 and painful plexiform tumors

OBJECTIVE: Evaluate the Acceptance and Commitment Training (ACT) intervention, which has been found effective in other medical populations for decreasing how much pain interferes with daily life 

CONTACT: To participate or obtain more information, please contact Dr. Staci Martin (martins@mail.nih.gov)  or Dr. Taryn Allen (taryn.allen@nih.gov) at (301) 496-0561.

Click here for more information about this research study.

NF1 Study: Everolimus for treatment of disfiguring cutaneous lesions in Neurofibromatosis 1

WHO CAN PARTICIPATE: Adult patients with NF1 and disfiguring cutaneous lesions

OBJECTIVE: Determine if orally administered Everolimus reduces the surface volume of dermal cutaneous and subcutaneous neurofibromas in subjects with NF1

CONTACT: To participate or obtain more information, please contact Patti Tate at patti.l.tate@uth.tmc.edu or (713) 500-5659.

Click here for more information about this research study.