Meet the volunteers who make up our Executive Committee, Board of Directors, and Advisors, who work together to keep the Foundation going and growing.
The Executive Committee consists of 4 Board members that are elected to serve as the officers of the Foundation. The Executive Committee runs the day to day operations of the Foundation.
Executive
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David Wolfe
President
Illinois
Read More About DavidDavid is honored and privileged to serve as the President of the CHARGE Syndrome Foundation. David, his wife Jody, and their son Daniel live in the northwest suburbs of Chicago. Long before David ever knew anything about CHARGE syndrome, he obtained a B.S. in business administration from the University of Illinois, Champaign-Urbana and a law degree from Washington University School of Law in St. Louis. He is a shareholder at Wolfe & Jacobson, Ltd in Chicago. In 1999, Daniel was born and in 2002, David and Jody's lives changed dramatically when Ethan was born with CHARGE syndrome. He opened their eyes to what is truly important in life. David attended his first conference in 2003, and he and his family have attended every CHARGE conference since then. Through their involvement with the Foundation, they have made close friends, celebrated many milestones, and shared so much information. Many of these friends helped them deal with the unexpected loss of Ethan in 2014. Those people who have worked with David know that he firmly believes that almost anything is possible with hard work. David brought that “it can be done” attitude to the Board when he joined in 2008. As the Fundraising Chair, he brought new ideas to the Foundation, which helped increase our revenue. In 2009, he joined the Executive Committee as the Foundation Treasurer. We were able to continue to increase our fundraising and control expenses. Since 2011 he has been the President of the Foundation. As President, David will continue to work hard to advance our mission. While we have come a long way, there is so much more we can and will do in the areas of awareness, education and research. He looks forward to the challenges that lie ahead. David appreciates the opportunity to serve and is available for contact with any questions, comments or concerns. Together we will take the Foundation to new heights. Together, we will make a better world for all individuals with CHARGE.
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Neal Stanger
Vice President
New York
Read More About NealNeal has been on the Board of Directors of the CHARGE Syndrome Foundation since 1997 and ended his sixth year as President in July of 2011. Neal serves as a chair of the Conference Committee. Neal can be reached at Contact Neal.
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Amrit Mehta
Treasurer
Michigan
Read More About AmritIn 2001, Amrit and his wife Poonam immigrated to Canada. Shortly after arriving in their new home, their first child, Aman, was born with CHARGE syndrome. Having found themselves in a new country, with their families thousands of miles away, they were in desperate need of information and support. The CHARGE Syndrome Foundation and its support network quickly filled that void. Today, Aman is almost 15-years old, and despite numerous hospitalizations and surgeries over the years, he has come a long way. This would not have been possible without the resources, guidance, and support from the Foundation, and the many committed parents and professionals who devote their time to it. In 2011, Amrit decided to give back in a small way, and volunteered to serve on the board of The CHARGE Syndrome Foundation. It is an absolute privilege serving on this Board, with several talented people who are so passionate about making a difference. Amrit and Poonam currently live in Bloomfield Hills, Michigan with their three children, Aman (15), Anmol (9), and Rynah (5). Amrit works full-time at General Motors Company, as a senior executive in Product Development. Over the last 20-years, he has lived and worked in India, UAE, UK, Canada, and USA, holding various positions in Marketing, Sales, Strategy, and General Management at General Motors, Emirates Airline, and Smith & Nephew. Amrit earned a Bachelor's Degree in Mechanical Engineering in India, and a Masters in Business Administration (MBA) in the UK. He also holds a Chartered Professional Accountant (CPA), and a Certified Management Accountant (CMA) designation from Canada. He teaches the CPA’s Professional Education Program and is an alumnus of the 2008 Governor General's Canadian Leadership Conference. Contact Amrit.
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Joanne Lent
Secretary
New Jersey
Read More About JoanneJoanne and her husband Mike entered the new millennium with their second child, a son, who brought with him unexpected challenges and more questions than answers. Eddie’s medical issues are few compared to his “CHARGE brothers and sisters” but his intellectual and sensory challenges have greatly impacted his life. For years the Lent family looked to the CHARGE Syndrome Foundation for information, direction, and inspiration. Joanne joined the board in 2013, her 6th conference. With Eddie attending Perkins School for the Blind (he started in July 2014) and Sarah heading to college (just two months later!), Joanne knew that her empty nest would give her the time and energy to give back to the Foundation and she is honored to be able to do so. Joanne will continue to use her publishing experience to produce an informative newsletter. She looks forward to the additional responsibilities that come with the Secretary position – especially those related to ensuring up to date information is available to everyone in our community. Joanne can be reached at Contact Joanne.
Board of Directors
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Allie Jones
Alabama
Read More About AllieAllie Jones has lived in Alabama all her life and resides in Montgomery, AL. She was the 3rd generation to attend the University of Alabama. She has been a member of the CHARGE Syndrome Foundation since 2006 when she attended her first conference. She has attended every conference since then with her husband, Damon, and their two daughters, Macon and Halyn. Allie was briefly the Alabama CHARGE State Liaison and has volunteered at several conferences over the years. She has been a member of the Board’s Fundraising Committee for the past two years; leading to her Co-Chairing the Silent Auction at the 2019 Dallas Conference. Allie currently works as a Customer Service Representative at her family’s Plumbing, Heating and Air business. Before joining the family business, she has held many different positions from working in the claims department at a local insurance company for 15 years to recently being the office manager of a small local wine importing company. In addition to working, she volunteers with both of her daughter’s schools as well as her local chapter of Junior League. She also assists with local fundraisers throughout her city. Contact Allie
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Anne Swenson
Ohio
Read More About AnneAnne lives in Cincinnati, OH with her husband Tim and two sons, Ben and Bradley. She is employed at Cincinnati Children’s Hospital as a Project Administrator. In this role, she partnered to form the Cincinnati Children’s CHARGE Center. Her first conference was 2015 in Chicago, IL and she felt an immediate connection to the patients and families. This connection led her to serve as the Program Manager for the CHARGE Center. While working with the CHARGE Center, Anne partnered with the Foundation to learn how to best help patients and families. She feels incredibly lucky to have a job that she loves and tremendous honor to be able to serve as a Board member for the CHARGE Syndrome Foundation. Anne earned a Bachelor’s degree in Marketing and Management from the University of Cincinnati and a Masters in Business Administration from the University of Mount St. Joseph. Anne has served as an advisor of strategic planning for the University of Mount St. Joseph, as a PTO board member at her child’s school and as a parent advisor at the Cincinnati Children’s Center for Children. Contact Anne
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Minnie Lambert
South Carolina
Read More About MinnieMinnie lives in South Carolina with partner Douglas Delaney and their son Andrew. She is employed with Family Connection of SC, a statewide nonprofit organization that supports families of children with special health care needs or disabilities, as a Family Partner. She also holds a position with her local school district’s Preschool Readiness Office as a Home Visitor to children that are at risk of not entering into school with the skills that they need. Most of the families that she serves have children with special needs. Minnie's journey into this world of CHARGE began when Andrew was born in 2003. For many years, she never knew of the connection to the CHARGE world that she needed, the very connection that changed her life. In 2011 the family attended their very first conference in Orlando, FL and since that time she has never looked back. She has committed her life to helping meet the needs of Andrew, children like him and other parents like herself. She feels that with all things in life it is imperative to give to others just as you receive. She has the privilege of joining this board as its youngest member and knows she has a long way to go and hopefully MANY years of service to give. She feels it is a honor to sit alongside the other individuals who make up this Board and to carry on the mission of this Foundation - making a better world for those living with CHARGE. Please feel free to contact Minnie if she can help you in any way. CHARGEing On…
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Ben Daigle
Connecticut
Read More About BenBen began volunteering as the Foundation’s Connecticut State Family Liaison in January 2020. In November 2021, he was elected to the Foundation’s Board for a first term starting in March 2022. To further the Foundation’s mission while on the Board, Ben’s goals include: 1) Supporting inclusive governance aligned with best practices, and 2) Collaborating to increase the racial and ethnic diversity of the Board and membership. Ben has 15+ years’ government, nonprofit, and civic experience, and currently serves as a public defense attorney representing people in Connecticut who are indigent. In advancing social justice through public policy advocacy and direct client representation, he strives to practice humble leadership grounded in empathy, equity, and integrity. Ben and his family enjoy being engaged in their community and having outdoor adventures throughout the year. Contact Ben
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Penni Echols
Nevada
Read More About PenniPenni and her husband Micah live in Las Vegas, Nevada with their six daughters. Their youngest, Martha was born in 2014 and the family connected with the CHARGE Syndrome Foundation during the difficult first years of her life. After reading handouts from the 2015 Conference while Martha was in the Pediatric Intensive Care Unit, Penni and Micah became members of the Foundation and have been engaged at various levels ever since. Penni is employed by Nevada Hands & Voices as an Educational Advocate and Parent Guide for families with children who are Deaf or hard of hearing. She passionately believes that every child can communicate when they have the right support and a willing partner. She volunteers as the CSF Nevada Parent Liaison and looks forward to connecting families to one another, the Foundation and the larger Deafblind network as a member of the board. Contact Penni
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Lily Slavin, PhD
Read More About LilyLily Slavin earned her PhD in school psychology from Central Michigan University (CMU) in 2022. She has been a member of the CHARGE Syndrome Research Lab at CMU working with Dr. Tim Hartshorne since 2016. After attending a Michigan CHARGE family picnic that year, she knew she wanted to continue studying CHARGE in graduate school. Lily’s research focuses on educational needs and support for students with CHARGE. She published an educational checklist for students with CHARGE and has presented her research at CHARGE conferences around the world, and to DeafBlind projects across the country. Lily has also written several book chapters on CHARGE. Lily’s favorite aspect of researching CHARGE is the tight knit community of professionals, family members, and individuals with CHARGE. She greatly looks forward to CHARGE conferences where she gets the opportunity to reconnect with this amazing community! Lily is honored to have joined the board in 2022.
Advisors
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Susan Bashinski
Advisor
Missouri
Read More About SusanDr. Susan M. Bashinski is a Professor of Special Education and is currently serving as the Interim Dean of the Missouri Western State University Graduate School. She has more than 40 years experience working with learners who experience multiple disabilities, including deaf-blindness and CHARGE syndrome. Throughout her career, Susan’s research interests and areas of expertise include early communication, gestural communication, and language development; learners who have CHARGE syndrome; augmentative communication; and cochlear implants for learners who experience deaf-blindness, These interests are reflected in both her work as a teacher educator and researcher. The body of Susan’s work is grounded in educational practice. She not only has a passion, but believes also a professional responsibility, to conduct pragmatic research and to work diligently to try and translate research findings into effective everyday practice. Susan then attempts to help others learn these practices through the classes she teaches and workshops she presents for families. Susan has directed numerous federal and state grants in low-incidence disabilities and deaf-blindness, including: personnel preparation, research, model in-service training, and assistive technology. She has extensive experience in providing professional development and technical assistance nationally and internationally, particularly in the areas of augmentative and nonsymbolic communication for learners who have low-incidence disabilities, including CHARGE syndrome and/or deaf-blindness. Susan has numerous publications and various presentations related to these topics. Contact Susan
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Timothy Hartshorne, PhD
Advisor to the Board
Michigan
Read More About TimothyTim Hartshorne is a professor of psychology, specialized in school psychology, at Central Michigan University. His doctoral degree is from the University of Texas at Austin. He is the grant holder for DeafBlind Central: Michigan’s Training and Resource Project, which provides support to children who are deafbind in Michigan. He has been researching and presenting about CHARGE syndrome since 1993, motivated by the birth of his son Jacob who has CHARGE in 1989. In 1999 Tim established the CHARGE Syndrome Research Lab at Central Michigan University. His particular interest is in understanding the challenging behavior exhibited by many individuals with CHARGE. The lab is staffed with doctoral and specialist students in school psychology, along with some talented undergraduates majoring in psychology and/or neuroscience. Tim has been awarded the Star in CHARGE by the CHARGE Syndrome Foundation. His research was recognized in 2009 by the Central Michigan University President’s Award for Outstanding Research. He is editor, along with, Meg Hefner, Sandy Davenport and Jim Thelin, of the book CHARGE Syndrome. Contact Tim.
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Meg Hefner, MS, CGC
Advisor to the Board
Missouri
Read More About MegMeg Hefner is a genetic counselor with longstanding interest and expertise in CHARGE syndrome. She completed her genetic counseling training at the University of Michigan. Her experience with CHARGE syndrome began in the mid-1980s, when the newly recognized “CHARGE association” became the focus of a deafblind research team at the University of Missouri, Columbia. This team published extensively on the features of CHARGE and came up with the first algorithm for clinical diagnosis of CHARGE syndrome. Meg’s involvement with CHARGE has included writing and editing educational materials for families, starting the CHARGE Accounts newsletter and, in 1993, co-founding the CHARGE Syndrome Foundation. She has been an integral part of every CHARGE Syndrome Foundation International Conference since the first one in St. Louis in 1993. Meg is the recipient of both the Star in CHARGE award from the CHARGE Syndrome Foundation and the Diane Baker Alumni Award from the University of Michigan. She was an editor of the 2005 issue of the American Journal of Medical Genetics devoted entirely to CHARGE and the 2010 Plural Publishing book on CHARGE syndrome. Currently, Meg devotes her efforts to the CHARGE Syndrome Clinical Database Project (CSCDP), a registry and database at Saint Louis University created to facilitate CHARGE research projects around the world. This continuing close affiliation with CHARGE syndrome has allowed Meg to learn about deafblindness and to understand the unique struggles of individuals with CHARGE and their families. Contact Meg.
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Donna Martin, MD, PhD
Advisor to the Board
Michigan
Read More About DonnaDonna M. Martin (Dr. Martin, left) is mother of Noam Raphael (right), who has CHARGE syndrome. They are photographed at the University of Michigan football stadium, cheering on their beloved Wolverines! Donna is a Clinical Geneticist, Pediatrician, and Neuroscientist working at The University of Michigan Medical School. She went to elementary, middle, and high school in Wayland, Michigan, and then attended college at Michigan Technological University in Houghton, Michigan. She studied in Germany (Saarbrucken and Stuttgart) for one year before enrolling at The University of Michigan Rackham Graduate School where she received a PhD in Neuroscience. She then completed Medical School and residencies in Pediatrics and Medical Genetics at The University of Michigan. Donna joined the faculty of the University of Michigan Medical School in 2001, and is currently Professor in Pediatrics, Human Genetics, and Otolaryngology. Donna serves as chair of the Scientific Advisory Board for the Foundation. Her laboratory focuses on mouse and cell based models of CHARGE syndrome, and on identifying new genetic causes of CHARGE. She and her husband, Yehoash Raphael, Professor of Otolaryngology at The University of Michigan, work collaboratively in their laboratories, and are both dedicated to improving the lives of individuals with CHARGE syndrome and their families. In her spare time, Donna enjoys travelling with her family, running, swimming, yoga, playing tennis, reading, and doing crossword puzzles. Contact Donna.
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Jody Wolfe
Director of Administration
Illinois
Read More About JodyIn 2002, when Jody’s son Ethan was born, she immediately looked to the Foundation for information and support. The Foundation has been an important part of her life since then and she has created many lifelong friendships. Jody feels it is a privilege to give back to such a great organization. Jody has a B.A. in accounting from the University of Missouri. Early in her career, she practiced as a CPA, and later worked at McDonald's Corporation and Nextel Communication in finance and human resources. She completed the Illinois Family Leadership training for families of children who are deaf-blind, served on the Illinois Advisory Board for the deaf-blind, and is a parent mentor for the Lurie Children's Hospital ParentWISE program. She served as committee chair for registration and the camp program for the CHARGE Foundation’s International conferences in 2009, 2011, 2013, and 2015. Most recently, Jody has worked with the National Center on Deaf-Blindness in the creation of online intervener modules and field testing modules to be released. She is looking forward to continuing her involvement with the Foundation. Contact Jody.
