STAFF & LEADERSHIP
Chief Executive Officer
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.
Family & Community Engagement Manager
Samantha joined IRSF as the Family & Community Engagement Manager in 2018. Samantha graduated from Mid America Nazarene University with a degree in Human Relations and Management.
Samantha has 2 girls, Cede (pronounced like Sadie) and Macy. Macy is 8 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 the Family & Community Engagement Manager, she is dedicated to helping our families every step of the journey.
Government Relations Manager
Katie has spent more than 17 years as a caregiver to a young lady with Rett syndrome including time as a one-on-one Paraprofessional in the school setting. Katie was introduced to IRSF (IRSA at the time) early in her caregiving days and quickly became a supporter and volunteer for the organization. After attending the 2012 New Orleans World Congress Conference, Katie started her journey to earning her M.A. in non-profit administration in hopes of joining the IRSF organization.
Katie’s goal was reached in 2018 when she joined IRSF’s team supporting events and educational program. As the Government Relations Manager supporting IRSF’s advocacy program.
Katie is dedicated to the Rett syndrome community and looks forward to the day when a cure is reached!
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.
Marketing & Communications Director
Meghan joined IRSF in March of 2022 after a 15-year career managing marketing and communication programs across various industries. Originally from Southern California, Meghan received her bachelor’s degree from UCLA in 2007 before moving to Las Vegas to work in the private sector. While completing her MBA at UNLV in 2014, she left the corporate world for college athletics, leading the athletics marketing team that coordinated marketing, advertising, fan engagement, and in-game production for the 17 NCAA Division I sports at the university. Most recently, Meghan spent four years overseeing marketing and events regionally for the Make-A-Wish Foundation. It was through this experience that she first became familiar with Rett syndrome and now looks forward to using her skills to advance awareness of the IRSF mission and its vision of a world without Rett. Meghan lives in Southern Nevada with her partner, William, and their rescue dog, Lucy.
Fundraising Event Manager
Si joined IRSF as the Fundraising Event Manager in August of 2023. She has served the nonprofit sector for more than two decades, combining her passion for event planning with her love for nonprofit work to create a dynamic blend that fuels her drive. For six years, she also ran her own event planning business, working with individuals and other nonprofit organizations to bring their dreams to life.
When Si isn’t working, you’ll find her in her element, watching NFL games, grooving to music, or whipping up delicious creations in the kitchen (especially sweet treats!). But her heart truly belongs to spending quality time with friends and family, including her niece (17) and two nephews (15 and 10) who are more like her own children.
Tim Frank joined IRSF in July of 2018. 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 IRSF 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.
Nupur Garg, PhD
Vice President, Research
Dr. Garg’s career has revolved around the rare disease space – managing funding programs aimed at advancing basic and translational research, and designing initiatives to foster resource sharing and scientific collaborations. She has a deep understanding of the unique challenges faced by rare diseases, and strongly believes that a comprehensive research program is vital to accelerating discovery of novel therapies.
Dr. Garg earned her PhD in Biochemistry and Molecular Biology from the University of Medicine and Dentistry, and Rutgers, the State University of New Jersey. Her work focused on the role of the NF-kappaB family of transcription factors in B-cell lymphomas. She began her career as a Director of Research at the Jain Foundation where she managed a global research funding program on Limb Girdle Muscular Dystrophy 2B (LGMD2B). She has also served as the Program Director for the Lymphatic Malformation Institute (Generalized Lymphatic Anomaly, GLA and Gorham Stout-Syndrome, GSS) where she provided programmatic leadership by formulating and implementing funding policies, and launching the institute’s science program. Most recently, Dr. Garg held a position at AGC Biologics, a leading global manufacturer of biologic therapeutics, in their Business Development Operations.
Brittney joined IRSF in March of 2012 and her wide array of skills allow her to wear many hats while supporting International Rett Syndrome Foundation’s day-to-day needs. Brittney’s experience in accounts receivable, database administration make her a valuable asset to IRSF. 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.
Joelle Handloser (Watson)
Joelle joined IRSF in June of 2022. An Illinois native, she received her BA in Theatre: Stage Management from Baldwin Wallace University. Her education in nonprofits has given her valuable experiences in theatre and classical music in the Cleveland area prior to joining the IRSF team. In her spare time, she enjoys hiking, baking, and attending jazz concerts. Joelle lives in Cincinnati with her partner, Tom, and their cat, Soup.
Clinical Network Manager
Carmen joined IRSF in 2021 to manage the newly formed Rett Syndrome Center of Excellence Network. Carmen holds a Bachelor of Science degree from Miami University and a Master of Public Health degree from the University of Louisville. She has over 10 years of research project management experience and worked at the Kaiser Permanente Colorado – Institute for Health Research prior to joining IRSF. As a mother of three, including a daughter with Rett syndrome, Carmen is passionate about supporting clinics to facilitate and advance research to treat and cure Rett syndrome.
Family Empowerment Director
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.
BOARD OF DIRECTORS
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 McMahon has over 30 years of consumer marketing experience including his work as Chief Marketing Officer for Heineken USA and Vice President of Marketing for Diageo North America. Christian’s advertising campaigns have earned top honors at Cannes, The Effies, Clios, and DA&D among many others. He has been profiled by ABC News, CNBC, Forbes, and The Wall Street Journal.
Christian and his wife Ariane have been actively involved with IRSF 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 and work with their two other children, Keegan and Avery, who founded the Stand for Rett lemonade stand fundraiser. Christian is also one of the original board members of IRSF in 2007, coming over after serving 4 years as a board member with RSRF.
Leslie Mehta is an attorney and Chief of Staff and Counsel to the CEO at the Richmond Metropolitan Transportation Authority. She has nearly two decades of legal and advocacy experience. She holds a Bachelor’s degree in English Literature from the University of North Carolina at Chapel Hill and a J.D. from Howard University School of Law. In her professional career, she has advocated for the rights of women, people of color, and the LGBTQIA+ community, among others.
Leslie’s daughter, Brooke, was diagnosed with Rett Syndrome in 2017. In 2020, Leslie launched prettybrooke.com where she interviews politicians, executives, thought leaders, and parents about disability issues. Sadly, Brooke lost her battle with Rett Syndrome on March 25, 2021, at just 5 years old. Leslie, her husband Tarun, and daughter Blair live in the suburbs of Richmond, Virginia.
Mitch Bleske is the Chief Operating Officer for Bremer Financial. He oversees all components of Bremer’s revenue production, including executive oversight of Bremer’s commercial and agriculture banking, capital markets, consumer and mortgage banking, insurance, investments, retirement plan services and wealth management teams, in addition to overseeing Bremer’s operations and product and innovation teams. From May 2013 through September 2021, Mitch also served as Bremer’s Chief Financial Officer.
Mitch is actively involved in the community, 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.
Gordy Rich 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.
Gordy is the president of Reading Rock and was responsible for leading IRSF’s largest and longest-running fundraiser, the Cincinnati Tri-State Strollathon, which raised nearly $2M for Rett syndrome research and family empowerment.
Bill Babiarz 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 a 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 is to educate the world about Rett syndrome, build awareness about individuals with disabilities, and 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 IRSF fits into that mission perfectly.”
Before Ella’s diagnosis ten years ago, Beth Farnum spent a decade in Nike’s marketing department before deciding to care for her daughter full-time. Since she’s been staying at home with Ella and her two younger brothers, she has been instrumental in guiding not only Ella’s education process, but her medical and therapeutic needs. She and her husband, Bill, 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 funds to help Ella and thousands of girls like her from this disorder.
Mary Forrest Engel is mom to Henry and Theo and married to Richard Engel. Henry was born with Rett Syndrome, and very sadly passed away due to complications from Rett in August of 2022 at the age of six. Upon receiving Henry’s diagnosis, Mary and Richard, Chief Foreign Correspondent for NBC News, set out to raise awareness about Rett. They have shared their experience as parents of a child with disabilities and medical needs in an effort to connect with other families and accelerate research into transformative treatments for Rett Syndrome and similar diseases.
Mary, originally from California, moved to New York City after college and began a career in television production. She worked on series for NBC, PBS, CBS, The History Channel, Food Network and HGTV, among others. She received three Emmy awards during her time working on The Martha Stewart Show.
These days Mary is a full-time mom. She also spends a good deal of time corresponding with other parents of people who have neurological disorders from around the world. She is dedicated to fighting for inclusion in all areas and access to robust education for people with complex needs.
Dr. Joseph 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 DAYBUE (trofinetide), the first-ever FDA-approved treatment for Rett syndrome.
Dr. Lisa 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. She 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.
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 IRSF, Alan joined KC Byers on the Rett Ride Across America in the Fall of 2018 to ride across the Eastern half of the US.
Dr. Laura Stoppel is a Principal on the Investment Team at RA Capital Management, a Boston-based multi-stage investment manager dedicated to company formation and evidence-based investing in healthcare and life science companies. Laura works on both public and private investments and serves as a Board Director for Artiva Biotherapeutics, Nimbus Therapeutics, Indapta Therapeutics, and Acumen Pharmaceuticals. Laura holds a BA in Biology and Psychology from Harvard University, and a PhD in Neuroscience from MIT. Her graduate research investigated synaptic translation in syndromic autism.
Steve Tomes is 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.
Steve Wood is the Executive Vice President of Johnson Supply, a distributor of HVAC products. Prior to working with Johnson Supply, Steve served in various senior leadership positions with Lennox International. He has over 40 years’ experience in sales, marketing, and business leadership. Through his consulting business, Steve has provided leadership and business development services to both publicly traded and privately held companies.
Steve and his wife, Kay, are grandparents to Kenzie and Kaylie Morell who are twins diagnosed with Rett Syndrome. When the twins were diagnosed Steve and Kay relocated to be near the twins, their daughter Kassie, and her husband Brian Morell. Kay helps Kassie care for the daily needs of the twins. Steve has worked with Johnson Supply and other generous corporate donors and sponsors to support Raise a Glass and other IRSF fundraising initiatives.
Scientific Advisory Board
Qiang Chang, PhD
Professor of Medical Genetics and Neurology, Director of Waisman Center, University of Wisconsin-Madison
James Ellis, PhD
Professor, Department of Molecular Genetics, The University of Toronto; Senior Scientist, Developmental and Stem Cell Biology, The Hospital for Sick Children (SickKids), Toronto
Kyle Fink, PhD
Assistant Professor, Neurology and Regenerative Cures, University of California, Davis
Rocco Gogliotti, PhD
Assistant Professor, Department of Molecular Pharmacology and Neuroscience, Loyola University Chicago
Wendy Gold, PhD
Director of Academic Career Development (SoMS), The University of Sydney, School of Medical Sciences; Head, Molecular Neurobiology Research Group, Sydney Children’s Hospitals Network; Adjunct Research Scientist, The Children’s Medical Research Institute
Lucas Pozzo-Miller, PhD
Professor, Department of Neurobiology, The University of Alabama at Birmingham
Steve Moss, PhD
Professor of Neuroscience and Director of the Astrazeneca-Tufts Laboratory of Basic and Translational Neuroscience, Tufts University
Sharad Verma, PhD
Special Assistant in the Developmental Therapeutics Program at the National Cancer Institute (NCI) at the National Institutes of Health (NIH) (Dr. Verma is serving in his personal capacity.)
Zhaolan (Joe) Zhou, PhD
Professor, Department of Genetics and Neuroscience, Perelman School of Medicine, University of Pennsylvania
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
Dallas Armstrong, MD, Assistant Professor in the Department of Pediatrics and the Department of Neurology at UT Southwestern Medical Center and Medical Director of the Rett Syndrome and Related Disorders clinic
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
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
Steven A. Skinner, MD, Director of the Greenwood Genetic Center
Bernhard Suter, MD, Assistant Professor at Baylor College of Medicine and Co-Director of the Blue Bird Rett Center
join our team
IRSF is always on the lookout for great talent who share in our passion and mission. We are a virtual organization based in Cincinnati, Ohio, with employees across the United States.