Our Staff & Leadership
Meet Our Staff
Upon 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
Dr. 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.
Director of Family Empowerment
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.
Director of Marketing & Communications
Tim 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.
Family Development Manager
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.
Family & Community Engagement Manager
Samantha 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 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.
Donor Database Coordinator
An 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.
Manager of Grants and Contracts
Andrea 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.
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.
OUR BOARD OF DIRECTORS
Bill is a senior derivatives trader at IMC Financial Markets. He has 16 years of professional experience in the option trading pits of the Chicago Board Options Exchange and the Chicago Mercantile Exchange. Bill holds Bachelor of Science in Finance from the University of Illinois at Urbana-Champaign. Bill and his wife, Jackie, have two girls, Cammy (RS) and Ryan. Immediately after Cammy’s diagnosis at 22 months, Bill and Jackie created the Cammy Can movement. Their goal was and continues to be, to educate the world about Rett syndrome, to build awareness about individuals with disabilities, and to raise money for research into Rett syndrome. Bill and Jackie are also passionate about providing support and guidance to newly diagnosed families.
Bill shared, “When Cammy was diagnosed, we quickly realized there were many things about Rett syndrome we could not control. Raising money and helping others who would be in the same, helpless spot we were in were two things we knew we could do. Being a part of the board at Rettsyndrome.org fits into that mission perfectly.”
Dr. David Pass is the Chief Operating Officer and Head of Commercial at Gelesis. Gelesis is a biotechnology company developing a novel category of therapies for GI-related chronic diseases. David has more than 25 years of commercial expertise and business development across multiple therapeutic areas with a focus on diabetes, metabolics and pain. He gained a broad range of commercial experience from his time with Johnson & Johnson, and Bristol-Myers Squibb. Prior to joining Gelesis David served as Vice President of Marketing at Boehringer Ingelheim (BI) for Diabetes, where he built and led a billion-dollar franchise. David received both his B.S. Pharmacy and Doctor of Pharmacy degrees from Philadelphia College of Pharmacy and Science.
Christian McMahan has remarkable executive leadership experience, recently assuming the role of President, Wachusett Brewing Company. Before that, he was a Managing Partner of the Smartfish Group, from 2012-2017. A marketing expert, Christian was the Chief Marketing Officer at Heineken and Touchtunes from 2008–2012.
Christian and his wife Ariane have been actively involved with Rettsyndrome.org since the 2002 diagnosis of their daughter, Keilly, when she was two years old. Active in fundraising, they worked with the Joyce and Curley families to host the Boston Food and Wine Festival for over a decade. Christian recently completed a term on the Make-A-Wish International Foundation Board. He is also one of the original board members of the IRSF in 2007, coming over after serving 4 years as a board member with RSRF. He is interested in re-joining the Board to ensure the organization’s health and growth during this critical transition period.
Gordy and wife Anne’s daughter Kelly was diagnosed with Rett syndrome in 1997 at 20 months old. In 1999, Gordy led a passionate group of parents to form The Rett Syndrome Research Foundation (RSRF), which focused on the aggressive pursuit of research to accelerate treatments and a cure. Their achievements in funding new research and expanding the scope of knowledge included the discovery that most symptoms of Rett syndrome may one day be reversed. In 2007, RSRF joined with The International Rett Syndrome Association to form the International Rett Syndrome Foundation, which is known today by Rettsyndrome.org.
Gordy is the president of Reading Rock and is responsible for leading Rettsyndrome.org’s largest and longest-running fundraiser, the Cincinnati Tri-State Strollathon, which has raised nearly $2,000,000 for Rett syndrome research and family empowerment.
Peter White, Chairman and Cofounder of Attention Span Media and Chairman and Cofounder of Global Outsight, joined the board in 2014. Peter is recognized as a leading strategic business executive in the marketing and entertainment fields. Most recently, he has focused his professional and personal time on building successful enterprises and organizations, including for?profit and non?profit.
Attention Span Media has been responsible for developing new business strategies, marketing campaigns and social and digital strategies for clients in various industries, with a strong presence in tourism, entertainment, education, retail and sports. As Chairman of Attention Span Media, Peter and his team had a heavy hand in the new branding, website, and social media and marketing materials and strategies implemented by Rettsyndrome.org in 2014.
Before Ella’s diagnosis ten years ago, Beth spent a decade at Nike in marketing before deciding to stay home to care for her. Since she’s been staying at home with Ella and her two younger brothers, she has been instrumental in guiding Ella’s education process, medical and therapeutic needs. She and her husband, Bill have also founded Casting 4 a Cure, a 501(c)3 organization, which they started to help Ella live life to her full potential. Through various fly fishing tournaments they raise funding to help Ella and thousands of girls like her from this disorder.
Steve has had many years as a successful senior leader in the Western Region of Delaware North, a global food service and hospitality company. Steve and his wife, Donna, have a daughter, Amanda, who has Rett syndrome. Steve has been a supporter of the organization for eight years, serving in an informal leadership role in Central and Southern California, and has been instrumental in the development of the LA Feast and Fundraiser.
Dr. Horrigan is a pediatric neuropsychiatrist with over thirty years’ of experience working with children and adults with neurodevelopmental and pervasive development delays. He also has twenty years of experience in the pharmaceutical and biotech industry. Dr. Horrigan formerly served as the Head of Medical Research for Autism Speaks and as the Vice President of Clinical Development and Medical Affairs at Neuren Pharmaceuticals. Currently, Dr. Horrigan serves as Chief Medical Officer for AMO Pharma Limited and is an Associate Consulting Professor for the Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine.
In his career, Dr. Horrigan has seen over 100 patients with Rett syndrome. Dr. Horrigan has worked with pharmaceutical companies to create clinical programs for Rett syndrome, Fragile X and Angelman Syndrome. He was instrumental in helping launch Neuren’s clinical trials for NZ2566, known today as trofinetide.
Dr. Monteggia is a highly recognized neuroscientist and educator currently serving as Director of the Vanderbilt Brain Institute where she is studying the brain’s response to antidepressants and the role of MeCP2 in synaptic plasticity and behavior. Her published research has received more than 13,800 citations, and she is a highly sought-after speaker at scientific conferences.
Dr. Monteggia received her Bachelor of Science in microbiology and her Master of Science in biology from the University of Illinois at Urbana-Champaign. She earned her PhD from the Chicago Medical School at Rosalind Franklin University and conducted postdoctoral research at the Yale Department of Psychiatry.
Dr. Monteggia has received numerous awards for her work, including a National Research Service Award fellowship, a young investigator award from the National Alliance for Research on Schizophrenia and Depression, the Daniel X. Freedman Award from NARSAD for outstanding research, the Rising Star Award from the International Mental Health Research Organization, and the Daniel H. Efron Award for outstanding basic/translational research by the American College of Neuropsychopharmacology.
Mitch Bleske is Executive Vice President and Chief Financial Officer for Bremer Financial. He is responsible for all financial management activities, including reporting, management of interest rate risk, liquidity, capital, wholesale funding and investments. In addition, Mitch is EVP of Commercial and Ag Banking, with executive oversight of Bremer’s commercial, agriculture, mortgage, insurance and wealth management teams.
Mitch is actively involved in the community, serving on the board of Twin Cities Habitat for Humanity, and working with the Midwest Rett Syndrome Foundation. Mitch and his wife, Erin, have four children; one of whom was diagnosed with Rett syndrome at the age of 3.
Alan Shukovsky is the Executive Director of Sales and Marketing for Glasshouses, an exclusive event space in New York City. Alan was recruited by renowned restauranteur Stephen Starr to champion events at his first two restaurants in New York City, Buddakan and Morimoto, the namesake of the famed Iron Chef Masaharu Morimoto. Soon after, and for the next 15 years, Alan led the Catering and Events Team for three of the largest hotels in Hilton Worldwide; The Waldorf Astoria in New York City, The Hilton Riverside New Orleans and The Diplomat Resort and Spa in Hollywood, Florida. During his time at these iconic hotels, Alan worked with some of the largest not for profit galas in the country.
Alan and his wife, Eva, split time between New York City and Cooper City, Florida. They have two children; son Grayson, diagnosed with Rett syndrome in 2017, and daughter Vivienne. They actively raise awareness and funds for Rett syndrome. In support of Rettsyndrome.org, Alan joined KC Byers on the Rett Ride Across America in the Fall of 2018 to ride across the Eastern half of the US.
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) *Dr. Verma is serving in his personal capacity.
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