Our Staff & Leadership

Meet Our Staff

Melissa Kennedy

Executive Director

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Melissa KennedyUpon receiving her BA in chemistry and her master’s in health administration, Melissa co-founded HealthCare Research Systems, a patient satisfaction and outcomes research company. As Executive Vice President, the company grew exponentially which culminated in the sale of the company to National Research Corporation. Melissa worked at University of Rochester Medical Center developing strategic plans to support Clinical Centers of Excellence in Cardiovascular Care and Oncology. Melissa joined the Health Improvement Collaborative of Greater Cincinnati in 2007 as Director, Operations and Programming offering strategic oversight of Collaborative programs, including the development and execution of a nationally recognized, regional health care transparency program called YourHealthMatters. She also served as Project Director for the Robert Wood Johnson Foundation’s Cincinnati Aligning Forces for Quality program. Her activities earned her Exemplary Service recognition from the Ohio Senate.Most recently, Melissa held the position of Executive Director, Women’s Services, at TriHealth. Melissa lives with her husband John and her two sons, Patrick and Will.


Dominique Pichard, MD

Chief Science Officer

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Dominique Pichard, MDDr. Pichard has focused her career on patients with rare disorders and complex medical needs. Prior to joining RSO, Dr. Pichard held a joint appointment in the Department of Pediatric Oncology and Department of Dermatology at the National Institutes of Health (NIH), where she worked as a clinical investigator. In addition to caring for patients with complex medical needs, her research focused on identifying new treatments and improving clinical trial design for rare diseases. She is a member of the Director’s Council and is the co-Chair of the skin neurofibroma group of Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS), an international effort to develop standardized outcome measures and trial design for clinical trials. Dr. Pichard received her Doctor of Medicine from Georgetown University. She was in a combined Internal Medicine-Pediatrics Residency at the University of Minnesota followed by a Dermatology Residency at Georgetown University. She then completed a Clinical Research Fellowship at the NIH before staying on as faculty.

As the parent of a daughter with Rett syndrome, Dr. Pichard brings a unique passion to her role as Chief Science Officer and is committed to identify research breakthroughs that lead to treatments and ultimately a cure for Rett syndrome. She serves as CSO so that one day our children can do more and struggle less with the challenges of Rett syndrome.


Paige Nues

Director of Family Empowerment

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Paige leads initiatives focused on building bridges between patient families, clinicians, scientists and industry to stimulate participation and engagement in research activities, Centers of Excellence, and foster patient-centered research development and design. She also provides a safety net of accurate information through education programs designed to empower families, caregivers, and support teams at all ages and stages, including organ donation for Rett research. Paige served on the Board of Directors as a volunteer Regional Representative and is parent founder of Katie’s Clinic for Rett and Related Disorders at UCSF Benioff Children’s Hospitals. She enjoyed a successful career in sales, marketing, and business development with Fortune 100 companies prior to her daughter Katie’s diagnosis of Rett syndrome in 2003, when she turned her full energy and passion to solving the mysteries of Rett syndrome. She gratefully accomplishes this life work with the full support of her husband and 3 beautiful daughters.


Tim Frank

Director of Marketing & Communications

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Tim FrankTim Frank joined Rettsyndrome.org in July of 2018 as the Marketing & Communications Director. An Indiana native, Tim moved to Nashville and worked in the music industry for ten years producing photo shoots, album packaging, and marketing materials for platinum and gold selling artists like Amy Grant, Chris Tomlin, Newsboys and Steve Curtis Chapman. After he and his wife Amy had their two girls, Abigail and Elizabeth (Ella), they moved to Boca Raton to be closer to family in 2011. Ella was diagnosed with Rett syndrome in 2012 after noticeable regression. Before joining the Rettsyndrome.org team, Tim was the Marketing & Communications Director at a leading foster care agency where he led regional efforts to increase awareness and fundraising. Tim is passionate about restoring hope to Rett families while aggressively pursuing a cure for Rett syndrome.


Jackie Ventura

Family Development Manager

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Jackie Ventura joined Rettsyndrome.org as the Family Development Manager in February of 2016. However, Jackie was no stranger to Rett syndrome as she began working with the community in 2011 through a former employer. She was able to develop great relationships with families at Strollathons, the 2013 Salt Lake City Family Conference & the Boston Food & Wine Festival. Her background in marketing & events along with her passion for giving back allows Jackie to help those in the Rett syndrome community host meaningful fundraisers, large or small. Jackie works remotely from Boston where she lives with her husband Mike and dog, Stanley.


Samantha Brant

Family & Community Engagement Manager

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Samantha BrantSamantha joined Rettsyndrome.org as the Family & Community Engagement Manager in 2018. Prior to taking this role, she worked as a childcare provider and as an Executive Team Leader for a Fortune 500 company. Samantha graduated from Mid America Nazarene University with a degree in Human Relations and Management.

Samantha has 2 girls, Cede (Sadie) and Macy. Cede is a freshman in college studying Radiology Technology. Macy is three and has Rett syndrome. Since her diagnosis, Sam has dedicated herself to raising awareness & educating the public about Rett syndrome, and raising funds for research.

As our Family & Community Engagement Manager, she is dedicated to helping our families and hopes to strengthen our community.


Brittney Gibson

Administrative Manager

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Brittney joined Rettsyndrome.org in March of 2012 and her wide array of skills allow her to wear many hats while supporting Rettsyndrome.org’s day-to-day needs. Brittney’s experience in accounts receivable, database administration make her a valuable asset to Rettsyndrome.org. Brittney sees her love of administration as a unique opportunity to support families impacted by Rett syndrome. Brittney has long been a volunteer at the Cincinnati Strollathon where she has gotten to know so many of the wonderful girls and boys she works to support each day. Brittney is married to her wonderful husband Deric and has two beautiful children: daughter, Ava and son, Cayden. Brittney is full of life and compassion and loves supporting the Rett syndrome community.


Sarah Clapp

Donor Database Coordinator

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Sarah ClappAn Indiana native, Sarah received her B.A. in Kinesiology & Physiology with a minor in Spanish from Hanover College. She has worked with adults and children as a personal trainer and health coach for WebMD and Riley Children’s Hospital in Indianapolis. After moving to Cincinnati, Sarah worked in occupational and physical therapy at Cincinnati Children’s Hospital, where she was first introduced to Rett syndrome. Sarah has enjoyed using her love of technology and her love of people to help others improve their life. Sarah volunteers as a crisis counselor for the Crisis Text Hotline and is a big fan of sporting events, concerts and her dog, Scout.


Andrea Reed

Manager of Grants and Contracts

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Andrea ReedAndrea joined the Rettsyndrome.org team in 2016. Andrea’s background includes a degree in Nuclear Medicine Technology which led to a career as head of a Nuclear Cardiology Department. She has worked in a clinical setting and has also served as a volunteer in Cincinnati at Healthy Moms and Babes and the Healing Center. After volunteering with Rettsyndrome.org, Andrea developed a passion for the organization and is excited to join the team in furthering our mission. She is currently focused on writing grants for Rettsyndrome.org. Andrea and her husband, Brendan, have four daughters – Cierra (Purdue University), Carleigh (Mount Notre Dame High School), Halle (Ursuline Academy) and Lauren (Bethany School).


Timothy Benke, M.D., Ph.D.

Medical Advisor

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Timothy Benke, M.D., Ph.D.Dr. Benke joined Rettsyndrome.org in an advisory role in July of 2018 to guide current efforts to support the development of a nation-wide, clinical infrastructure to provide best-in-class, family-centered clinical care.

Dr. Benke holds a Bachelor of Science degree from Vanderbilt University and a Master of Science degree from Rice University. He received his Doctor of Philosophy and Doctor of Medicine degrees from the Baylor College of Medicine.

Dr. Benke serves as an investigator in the NIH-funded Natural History Study and is well known in the Rett syndrome community. An accomplished clinician and researcher, he is the Ponzio Family Chair in Pediatric Neurology Research and Director of Research at the Neuroscience Institute at Children’s Hospital Colorado, where he is also Medical Director of the Rett Clinic.  Dr. Benke brings years of experience as well as an innovative approach to creating?family-centered clinical programs.


Careers

OUR BOARD OF DIRECTORS

Scientific Advisory Board

Huda Zoghbi, MD, Director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, Professor at Baylor College of Medicine, and Investigator with the Howard Hughes Medical Institute
James Eubanks, PhD, Senior Scientist and Research Division Head at Krembil Research Institute, at the University Health Network in Toronto
Qiang Chang, PhD, Neuroscientist, and Director of the Waisman Center at the University of Wisconsin-Madison
Zhaolan (Joe) Zhou, PhD, Molecular geneticist and neuroscientist at the University of Pennsylvania, and Director of the Preclinical Models Core at the Intellectual and Developmental Disabilities Research Center at Children’s Hospital of Philadelphia
Joseph Ecker, PhD, Molecular biologist at the Salk Institute for Biological Studies, where he is the International Council Chair in Genetics, Director of the Genomic Analysis Laboratory, and an Investigator with the Howard Hughes Medical Institute
Kyle Fink, PhD, Neuroscientist at the Institute for Regenerative Cures at UCDavis
Alysson Muotri, PhD, Professor at the Sanford Consortium for Regenerative Medicine at UC San Diego
Haiyan Fu, PhD Scientist at the Gene Therapy Center at the University of North Carolina
Sharad Verma, PhD, Program Director in the Preclinical Therapeutics Grants Branch (PTGB) at the National Cancer Institute (NCI) at the National Institutes of Health (NIH)
Marcie Glicksman, PhD, Neuroscientist and Head of biology at EnClear Therapies
Tiina Urv, PhD, Behavioral scientist in the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences (NCATS) at the NIH
Liz Berry-Kravis, MD, PhD, Child neurologist and the Co-Director of the Molecular Diagnostics Section of the Genetic Laboratory at Rush University

Medical Advisory Board

Chair: Elizabeth Berry-Kravis, MD, PhD, Child Neurologist and the Co-Director of the Molecular Diagnostics Section of the Genetic Laboratory at Rush University
Tim Benke, MD, PhD, Professor of Pediatrics, Neurology, Pharmacology and Otolaryngology at the University of Colorado School of Medicine, Ponzio Family Chair in Pediatric Neurology Research and Director of Research at the Neuroscience Institute at Children’s Hospital Colorado
Sasha Djukic, MD, PhD, Professor of Neurology at Albert Einstein College of Medicine and the Director of the Center for Rett Syndrome in the Children’s Hospital at Montefiore
Tim Feyma, MD, is a Child Neurologist and the Associate Medical Director of the Rett Syndrome and Movement Disorder Clinic at Gillette Children’s Specialty Healthcare
Daniel Glaze, MD, Pediatric Neurology Specialist, Professor of Pediatrics and Neurology at Baylor College of Medicine and Medical Director at Texas Children’s Hospital Blue Bird Circle Rett Center.
Mary Jones, MD, MPH, Pediatrician and the Medical Director of Katie’s Clinic for Rett syndrome and related disorders at UCSF Benioff Children’s Hospital
David Lieberman, MD, PhD, Child Neurologist and Clinical Director at the Comprehensive Rett Syndrome Program at Boston Children’s Hospital
Eric Marsh, MD, PhD, Child Neurologist at the Children’s Hospital of Philadelphia (CHOP) and the Clinical Director of the Orphan Disease Center at the University of Pennsylvania
Jeffrey Neul, MD, PhD, Child Neurologist and the Annette Schaffer Eskind Chair and Director of the Vanderbilt Kennedy Center for Research on Human Development at Vanderbilt University Medical Center
Alan Percy, MD, Child Neurologist at the University of Alabama and the Director of the Rett Syndrome Clinic, and Primary Investigator for the Rett and Rett-related disorder Natural History Study
Robin Ryther, MD, PhD, Child Neurologist and Pediatric Epileptologist at Washington University in St. Louis, MO

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