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Our Executive, Board & Advisors

Meet the volunteers who make up our Executive Committee, Board of Directors, and Advisors, who work together to keep the Foundation going and growing.

If you would like to contact a Board Member or Advisor, please email [email protected]

Executive Committee

  • Neal Stanger

    President

    New York


    Read More About Neal

    Neal has been on the Board of Directors of the CHARGE Syndrome Foundation since 1997 and serves as a chair of the Conference Committee.

  • Penni Echols
    Penni Echols

    Vice President

    Nevada


    Read More About Penni

    Penni 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. Professionally, Penni has worked as a fierce advocate 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. Penni enjoys connecting families to one another, the Foundation, and the larger Deafblind network. She represents the Foundation as a Nevada Family Liaison, spends countless hours volunteering at our conferences and hosting parent support groups, and has been a member of the board since 2022.

  • Amrit Mehta

    Treasurer

    Michigan


    Read More About Amrit

    In 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.

  • Joanne Lent

    Secretary

    New Jersey


    Read More About Joanne

    Joanne 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.


Board of Directors

  • Minnie Lambert
    Minnie Lambert

    South Carolina


    Read More About Minnie

    Minnie lives in South Carolina with partner Douglas Delaney and their adult 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 Family Education Manager. She helps provide resources and support to families around the special education process as part of the Education Team. Minnie has a focus on children that have sensory loss, especially those that are DeafBlind with additional disabilities. Minnie often collaborates with the South Carolina DeafBlind Project to provide education and support to families within SC. Minnie also is the CHARGE State Liaison for the state of SC. 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. Minnie is currently in her second term on the Board of Directors for the CHARGE Syndrome Foundation and her focus remains on Family Support and Education. She feels it is an 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. CHARGEing On!

  • Ben Daigle

    Connecticut


    Read More About Ben

    Ben 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.

  • Lily Slavin, PhD

    Maryland


    Read More About Lily

    Lily 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.

  • Woman in a pink top with dark brown hair smiles at the camera.
    Sara Espanet, M.Ed.

    Perkins School for the Blind


    Read More About Sara

    Sara Espanet is a Supervising Practitioner for teachers at Perkins School for the Blind in the Deafblind Program. Sara started working at Perkins School for the Blind in 2008 as a teaching assistant and in 2015 she became a classroom teacher after receiving her Masters in Severe Special Education from Bridgewater State University. At Perkins, Sara works with students who are deafblind and multimodal learners. As a classroom teacher Sara worked with many students who have CHARGE Syndrome and has experience working with student’s families and collaborating with the whole team to ensure the success of each of her students. Sara was a part of the Sandra Davenport Fellowship Program in 2015 and a mentor for the program in 2019 and 2023. Her favorite part of attending the CHARGE conference is connecting with families and working with the Fellows program to support new professionals in the field of CHARGE. Sara is honored to join the Board in 2024 and looks forward to continuing her work to support individuals with CHARGE Syndrome and their families.


Advisors

  • Meg Hefner
    Meg Hefner, MS, CGC

    Advisor to the Board

    Missouri


    Read More About Meg

    Meg 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. In 2022, Meg was awarded the the Marcus Velázquez Service Award by the Missouri Deaf-Blind Advisory Committee.

  • Donna Martin, MD, PhD

    Advisor to the Board

    Michigan


    Read More About Donna

    Donna 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 traveling with her family, running, swimming, yoga, playing tennis, reading, and doing crossword puzzles.