Tickets

$15.00 - $300.00

Late Registration (July 1 – 18)

General Registration – $250
General + off-site – $300*
Childcare (0-9) – $300
Mighty-G (9-11), G-Force (12-18), Generation-G (19-25) – $300

Please note:  General + Offsite is for individuals 18+ who either have galactosemia or are a spouse, parent, grandparent, signification other, etc. who want to attend offsite activities with an Age Group attendee. They will miss Breakout Series 1 & 2 on Friday, Breakout Series 4 & 5, and part of the General Session on Saturday.

Book Your Hotel Stay

The conference hotel is Embassy Suites by Hilton Charlotte Concord Golf Resort & Spa – use this link to book your room by June 15.

Conference Schedule

Speakers and Breakouts

Speaker: Gerard T. Berry, MD

 General Session: Funded Research- Adult Study/Living with Galactosemia as an adult

 Breakout Topic(s):

–    What To Expect In 1st 9 Years

–    The use of gene therapy to treat galactosemia

Bio: Gerard T. Berry, MD, is a biochemical geneticist and pediatric endocrinologist. He is a Professor of Pediatrics at the Harvard Medical School. He was the Harvey Levy Chair in Metabolism and Director of the Metabolism Program at the Boston Children’s Hospital, and Director of the Harvard Medical School Clinical and Medical Biochemical Genetics Training Programs. He was the President of the Society for Inherited Metabolic Disorders (SIMD).

Dr. Berry received a Bachelor of Science degree from the University of Notre Dame in 1971. In 1975, he was awarded a MD degree from the Jefferson Medical College/Thomas Jefferson University in Philadelphia, Pennsylvania. Dr. Berry completed his residency in Pediatrics at the Thomas Jefferson University Hospital in 1978. Subsequently, he began a combined fellowship in biochemical genetics and pediatric endocrinology at the Children’s Hospital of Philadelphia. He joined the faculty of the University of Pennsylvania School of Medicine as an Assistant Professor of Pediatrics in 1981 and was promoted to Professor of Pediatrics in 1995. Having spent over 20 years on the faculty at the University of Pennsylvania, he assumed the position of Division Chief for Metabolism and the Director of the Biochemical Genetics and the Molecular Diagnostic Laboratory at the Children’s National Medical Center in Washington, DC in 2001. In 2003, he was appointed Vice Dean for Research and subsequently as a Professor of Pediatrics and Biochemistry at the Jefferson Medical College/Thomas Jefferson University. In 2011 Dr Berry was appointed Professor of Pediatrics at Harvard Medical School. He is an Associate Member of the Broad Institute of Harvard and MIT, and a Member of the Manton Center for Orphan Disease Research at Boston Children’s Hospital. Dr. Berry has served as a Member of the American Board of Medical Genetics Item-Writing Committee, a Member of the Panel on Newborn Screening ACT Sheets, a Member of the Scientific Advisory Board of the United Mitochondrial Disease Foundation, the Corresponding Member representing the USA for the Society for the Study of Inborn Errors of Metabolism, a Member of the Board of Directors of the Society of Inherited Metabolic Disorders ( and presently is the Past-President), Associate Editor for Diabetes, a Member of the Editorial Board of Metabolism, Clinical and Experimental and as a Communicating Editor for the Journal of Inherited Metabolic Diseases. His review panel and other NIH service work includes serving as a Member of Gene Therapy and Inborn Errors (GTIE) Special Emphasis Panel, a Member of the Therapeutic Advances for Genetic Diseases (TAG) study section and the Chairman of the NIH Rare Diseases Clinical Research Network Data and Safely Monitoring Board 2. He is the co-chair for the Metabolomics Working Group of the NIH Undiagnosed Diseases Network (UDN). Dr. Berry has been the recipient of both NIH and non-federal grant awards. He has published over 225 peer reviewed papers and over 50 book chapters. He has been asked to speak at venues around the world. He was the recipient of the 2004 Emmanuel Shapiro SIMD Award. He received the Jefferson Medical College Alumni Achievement Award.

His primary basic science and clinical research efforts are focused on hereditary galactosemia, inositol metabolism in the brain particularly during fetal development, as well as a number of other metabolic disorders. He is an international leader in the field of galactosemia metabolism and works closely with the national Galactosemia Foundation organization. He has been a plenary speaker at their biennial meeting on many occasions. Dr. Berry has dedicated his entire career to the care of patients with rare genetic orphan diseases and has trained many physicians in this reavitaly new field of Medicine.

Speaker: Judith L. Fridovich-Keil, Ph.D

General Session: Funded Research- Adult Study/Living with Galactosemia as an adult

Breakout Topic(s):

–    Updates from the The Fridovich-Keil Lab & Gene therapy and bone marrow transplant data

–    Long-term outcomes in galactosemia

Bio: Judith Fridovich-Keil is a Professor of Human Genetics at Emory University School of Medicine, in Atlanta GA.  Judy grew up in Durham, NC, and her training includes an AB in Biochemistry from Princeton University, a PhD in Biology from the Massachusetts Institute of Technology, and postdoctoral and American Board of Medical Genetics and Genomics fellowship training at Harvard Medical School. Galactosemia has been the focus of research in Judy’s lab for more than 32 years, and she has had the privilege of participating in every Galactosemia Foundation conference since 2006. Judy and her husband, Mark, are the proud parents of 2 grown children and one cat.

Speaker: Dr. Gomez-Lobo, M.D.

Breakout Topic(s):

–    Fertility and fertility preservation in classic galactosemia

Bio: Dr. Gomez-Lobo is an obstetrician gynecologist who specializes in pediatric and adolescent gynecology. After receiving her Doctor of Medicine Degree from Georgetown University, she completed her internship at Thomas Jefferson University Hospital and residency at Tufts University. Prior to her recruitment to NICHD, Dr. Gomez-Lobo was the Director and Fellowship Director of Pediatric and Adolescent Gynecology MedStar Washington Hospital Center (MWHC), Children’s National Medical Center and Professor of Ob/Gyn at Georgetown University. She started the fourth pediatric and adolescent gynecology fellowship in North America and served as President of the North American Society for Pediatric and Adolescent Gynecology in 20016-2017. She currently serves as Associate Editor of the Journal of Pediatric and Adolescent Gynecology, as well as chair of the Oncofertility Pediatric Interest Network Research Sub-Committee. She is the site PI for the Disorders of Sex Development-Translational Research Network at Children’s National Medical Center. She has published and lectured extensively regarding the issues in the field of pediatric gynecology, including fertility preservation, differences in sex development, congenital anomalies and transgender care.

She currently serves as Senior Clinician and Director of Pediatric and Adolescent Gynecology (PAG) Program within NICHD and has a research protocol to evaluate ovarian tissue cryopreservation in girls with Turner syndrome and classic galactosemia.

Speaker: Nancy Potter, PHD, CCC-SLP

 Breakout Topic(s):

–    Treating speech and language disorders in galactosemia

–    Babble Boot Camp Team- Early intervention for infants and toddlers

 Bio: Nancy Potter’s first galactosemia research study involved driving across the US testing children with galactosemia using a very long protocol, earning her the nickname of “Squatter Potter”.   She is a professor of speech-language pathology at Washington State University in Spokane. Washington. She has been involved with pediatric and adult galactosemia research for the past 17 years and is currently on the Babble Boot Camp research team, looking at preventing or minimizing speech, language, and motor disorders by beginning therapy with infants as young as 8 weeks. She is thrilled to be back in-person at the Galactosemia Foundation conference.

Speaker: Victoria Heinlen, M.S., CCC-SLP

Breakout Topic(s):

–    Treating speech and language disorders in galactosemia

–    Babble Boot Camp Team- Early intervention for infants and toddlers

 Bio: Victoria Heinlen, M.S., CCC-SLP is an early childhood speech-language pathologist in the Thompson School District in Loveland, CO. While completing her master’s degree at Washington State University, she worked as a research assistant with Babble Boot Camp (BBC). BBC is an NIH funded clinical trial looking at preventing or minimizing speech disorders by initiating parent-implemented speech therapy with infants with classic galactosemia as young as 8-weeks of age through the toddler years. She has continued to volunteer with BBC. Victoria is the first author of the BBC SLP training curriculum which will allow early intervention

SLPs to implement BBC in their clinical practice and will be released through Northern Speech Services in the spring of 2024. Victoria enjoys dark chocolate and the crisp morning air of the Rockies.

Speaker: M E Rubio-Gozalbo

General Session: Funded Research- Adult Study/Living with Galactosemia as an adult

Breakout Topic(s):

–       Molecular fingerprints at different developmental stages in a galactosemia zebrafish model: what do they tell us?

–       The use of gene therapy to treat galactosemia

Bio: Prof. Dr. Estela Rubio Gozalbo is Head of the Metabolic Diseases department and full professor of inborn errors of metabolism with focus on galactosemia at the Mosakids Children’s Hospital, Maastricht University Medical Center in The Netherlands. After a happy childhood in Spain, she moved to the United States where she did part of her secondary school. She then moved back to Spain where she started Medicine at Valencia’s University. Shortly thereafter she met her husband, a Dutchman, and moved to The Netherlands where she completed her MD degree at the University of Amsterdam, and her Pediatric residency at the Emma Children’s Hospital in Amsterdam. During this residency, she was drawn to inherited metabolic diseases. Pursuing a professional carrier in this field, she moved to Nijmegen University as fellow metabolic diseases, where she qualified as consultant metabolic diseases and obtained her PhD on mitochondrial disorders. Since 2000, she has been working as a staff member of the Pediatric Department and Laboratory Genetic Metabolic Diseases at the Maastricht University Medical Center, combining clinical care with research in a joint effort with all the members of this community to advance knowledge and care for patients and families.

Prof. Rubio-Gozalbo’s fundamental- and clinical research efforts have been focused on galactosemia. She leads a multidisciplinary, successful Galactosemia research group with many national and international collaborations. She is founder and chair of the international Network for Galactosemias (GalNet) and coordinator of the international GalNet registry. She has been the recipient of several national and international grants and has published >150 peer reviewed papers and various book chapters. She is proud to be an Honorary member of the Dutch Galactosemia Society.

Understanding the needs of the patients and families, identifying the knowledge gaps in these disorders, and joining efforts to master those are her primary driving force.

Speaker: Naomi Vos

Breakout Topic(s):

–       Molecular fingerprints at different developmental stages in a galactosemia zebrafish model: what do they tell us?

Bio: Naomi Vos is a PhD candidate in the galactosemia research group of Prof. Dr. Estela Rubio-Gozalbo at the Mosakids Children’s Hospital, Maastricht University Medical Center in The Netherlands, and the aunt of a 5-years-old classic galactosemia patient. In 2018, when her sister gave birth to a baby boy with classic galactosemia, her research interest shifted to metabolic disorders with a focus on CG. She completed her Bachelors in Biomedical Sciences at Leiden University, The Netherlands, with an exchange semester at the Karolinska Instituted in Stockholm and a research internship in the department of Human Genetics at the Leiden University Medical Center. She recently graduated with distinction from her Masters in Biomedical Sciences at Leiden University. During her Masters she interned in the galactosemia research groups of Maastricht (Prof Rubio-Gozalbo) and Boston (Prof Berry). In addition to her scientific contributions to the galactosemia community, Naomi has been an active member of the Dutch Galactosemia Association for the last four years. As such, she has helped with the organization of social and educational activities for the Dutch galactosemia patients and their families, as well as contributed to the latest edition of the Dutch diet booklet for CG.

She is committed to contributing to the advancement of knowledge in this disease and very happy to have the opportunity to attend the conference.

Speaker: Kent Lai

Breakout Topic(s):

–    Experimental GALT mRNA therapy improves motor performance of a mouse model of Classic Galactosemia

–    The use of gene therapy to treat galactosemia

 Bio: A native of Hong Kong, Dr. Kent Lai earned his undergraduate degree in Biomedical Sciences from University of Bradford (UK) and his PhD from University of Maryland (US). He was also awarded his M.B.A. and MHA from Georgia State University (US). After receiving his PhD in Molecular and Cell Biology; he went on for his Post-doctoral Research Fellowship at Emory University School of Medicine (US). Dr. Kent Lai’s career as a researcher and educator began in 2002 at University of Miami School of Medicine, where, within 6 years, he rose from Assistant Professor to Associate Professor of Pediatrics. In March, 2009, Dr. Lai joined the Division of Medical Genetics (Pediatrics) at University of Utah as Associate Professor and was promoted to Full Professor in 2014. He has also held Adjunct Professorship at the Department of Nutrition and Integrative Physiology since 2017. Dr. Lai’s research focuses on the development of novel therapeutics for rare and common diseases, which include Classic Galactosemia, Phosphoglucomutase Deficiency, and cancers. He has been the Principal Investigator for numerous research grants awarded by the National Institutes of Health and American Heart Association. Dr. Lai is currently a member for the American Heart Association and NIH SBIR/STTR Study Sections, and he serves as Associate Editor of BMC Medical Genetics.

Speaker: Bijina Balakrishnan, Ph.D

 General Session: Funded Research-

 Breakout Topic(s):

–    Whole-body galactose oxidation as a robust functional assay to assess the efficacy of gene-based therapies in a mouse model of Galactosemia

 Bio: Bijina Balakrishnan is originally from India. She completed her masters and PhD from India and moved to Singapore for a postdoctoral fellowship before joining to Prof. Kent Lai lab in 2014. Her long-term interest in the discovery of therapeutics started, when she was a PhD student and such interest motivated her to pursue her postdoctoral research with Prof. Kent Lai at the University of Utah, where he focuses on therapeutic development for rare inborn errors of metabolism. In the past few years, she has learned many aspects of translational research, which include target identification and validation that are crucial for therapeutic development. Her research is mainly focused on the characterization and identification of novel therapeutic approach for Classic Galactosemia. Recently, she turned her attention to unravel the molecular pathophysiology of another rare inherited metabolic disorder called Phosphoglucomutase 1 (PGM1)-deficiency, with the long-term goal to develop improved therapies for this lethal disease. Outside of lab, she enjoys cooking, travelling and devoting time with her family.

Speaker: Benjamin Goodlett, PhD

Breakout Topic(s):

–       Transition & Identity achievement for teens and Adults with Galactosemia

–       Mental Health & Galactosemia

 Bio: I serve as the psychologist for the Metabolism Program in the Division of Genetics and Genomics at Boston Children’s Hospital. I came to Boston in 2016 for fellowship training with Susan Waisbren, PhD, and I have been the clinic psychologist for the last 5 years. In my clinical work, I provide psychotherapy and neuropsychological evaluations to children and adults affected by rare genetic disorders including Galactosemia.

I am active in basic and clinical trial research to identify associations between biochemical markers of inborn errors of metabolism with neuropsychological functioning. My passion is helping families balance medical needs with everyday life, and my role extends beyond clinical work and research to education and outreach.

Speaker: Dorothy Zhang, Ph. D., BCBA-D, LBA

Breakout Topic(s):

–    Behavior, Self-Management and Strategies

Bio: I am a doctoral level board certified behavior analyst (BCBA-D) and a licensed behavior analyst (LBA) in the state of Virginia. I earned a Ph.D. in education from George Mason University specialized in Educational Psychology and Applied Behavior Analysis. Currently, I’m a full-time faculty member and a program chair at the Chicago School, Online ABA program.

I have over 18 years of experience working with children and young adults with disabilities. Responsibilities include school consultation, home-based consultation, vocational training, staff training and supervision for future behavior analysts, program development, and conducting assessments (educational and behavioral).

I’ve been teaching Applied Behavior Analysis courses at George Mason University, the Chicago school of professional Psychology, and abroad since 2011, and am actively taking part in the development of behavior analysis in China.

Speaker: Claudio Akio Masuda

General Session: Funded Research- Is Cellular Senescence Relevant for Galactosemia?

Breakout Topic:

–    What are we learning about galactosemia from yeast models?

Bio: I am a biologist with a PhD in Biochemistry, and currently an Associate Professor from the Instituto de Bioquímica Médica at the Universidade Federal do Rio de Janeiro, Brazil. For more than a decade our group has been working on galactosemia using yeast models of the disease. After one year of serving (2020-2021) as a Visiting Professor at the Mayo Clinic (Rochester, USA), our group started to use patient-derived cell models to study the role of cellular senescence on the pathophysiology of galactosemia. I am thankful to GF for supporting the research I will be presenting at the 2024 Galactosemia Foundation Conference.

Speaker: Matthias Gautschi

General Session: Funded Research- Brain connectivity and metabolomics underlying cognition and motor functions

Breakout Topic: Brain connectivity and metabolomics underlying cognition and motor functions

Bio: Matthias Gautschi, MD PhD, is a trained paediatrician and metabolic specialist. He is consultant of the interdisciplinary metabolic team and takes care of patients with inborn errors of metabolism.

The main focus of his research is the pathomechanism and neuro-psychological function of classic galactosemia. He is also involved in the development of new treatment options and drug studies for a wide range of the ultra-rare inborn errors of metabolism, including fatty acid oxidation disorders, mitochondrial diseases, lysosomal and glycogen storage disorders.

Speaker: Applied Therapeutics- Shoshana Shendelman, PhD

General Session: Stronger Together, Racing to the Finish Line

 Breakout Topic:

–    Voices of Galactosemia (panel with caregivers sharing real life experiences)

 Bio: Shoshana Shendelman, PhD founded Applied Therapeutics in 2016. She serves as President and Chief Executive Officer as well as Chair of the Board of Directors. Prior to founding Applied Therapeutics, she founded Clearpoint Strategy Group LLC, a boutique life sciences consulting firm, where she served as the Managing Director from July 2012 to December 2016, and served as a Senior Advisor from January 2017 to December 2018. Dr. Shendelman received her Ph.D. in Cellular, Molecular and Biophysical Studies (CMBS) from Columbia University Vagelos College of Physicians and Surgeons. Dr. Shendelman is a Vice Chair of the Clinical Advisory Board of Columbia University Medical Center and Columbia University Vagelos College of Physicians & Surgeons, where she serves on the Nominations Committee and the Committee on Innovation and Entrepreneurship

Speaker: Applied Therapeutics- Riccardo Perfetti, M.D., Ph.D

Breakout Topic:

–    Advances in Galactosemia

 Bio: Riccardo Perfetti, M.D., Ph.D. has served as Chief Medical Officer of Applied Therapeutics since August 2018. Before joining us, Dr. Perfetti served as a Senior Medical Officer, Vice President and Head of Global Medical Affairs, Diabetes and Cardiovascular Business Unit at Sanofi S.A., a publicly traded pharmaceutical company, from October 2007 to August 2018. Prior to joining Sanofi, Dr. Perfetti served in various roles at Amgen Inc., a publicly traded biopharmaceutical company, including as a Director and Global Development Leader in diabetes, obesity, metabolism and endocrinology from December 2004 to August 2007. Dr. Perfetti was previously an associate professor of medicine at the University of California in Los Angeles and a professor of medicine at the National Institutes of Health (NIH). Dr. Perfetti practiced as an endocrinologist at Cedars-Sinai Medical Center and served as Director of the Diabetes Research Laboratory and Director of the Outpatient Diabetes Program. Dr. Perfetti received his M.D. and Ph.D. in Endocrinology from University La Sapienza in Rome, Italy and received postgraduate training in endocrinology and molecular biology at NIH.

Speaker: Applied Therapeutics- Evan Bailey, M.D

Breakout Topic:

–    Advances in Galactosemia

 Bio: Evan Bailey, M.D. is the medical lead for Galactosemia at Applied Therapeutics. Prior to joining Applied, Evan served as the Global Medical Lead for the Cystic Fibrosis pipeline at Vertex Pharmaceuticals. He served as the North American Medical Lead for TRIKAFTA® launch. Prior to Vertex, Evan was the Director of the Cystic Fibrosis Center at the University of Massachusetts Medical Center where he led the clinical and research efforts of the multi-disciplinary team. Evan is a Board-Certified pediatrician and completed his training at Boston Children’s Hospital after earning his M.D. at the Stritch School of Medicine of Loyola University Chicago.

Speaker: William Bell

Breakout Topic:

–  Managing Pharmacy Issues for the Patient with Galactosemia

 Bio: Bill Bell has been a registered pharmacist for over 30 years. Bill has experience as a community pharmacist, consultant and currently serves as the Director of Clinical Client Services for Liviniti with the responsibility to providing clinical pharmacy insight to over 500 self-insured employes nationwide.

Bill has spoken at many galactosemia conferences advising on ways to find safe and effective lactose free medications. Bill has been married to Maureen (classic galactosemic) for 23 years and resides in Chalfont, Pa.

Speaker: Maureen Bell

Breakout Topic:

–       Galactosemia 101

 General Session: Fireside Chat

Bio: Shortly after her birth in 1972, Maureen began to show the classic hallmark signs of “failure to thrive” jaundice, repeated vomiting, and weight loss. Seven days later, Maureen was diagnosed as having classic galactosemia (Q 188R) at Pennsylvania Hospital in Philadelphia, Pa. During her life, Maureen experienced many of the common complications from having galactosemia. None more impactful than being diagnosed with having Premature Ovarian Insufficiency (POF) at age 18 which is a direct result of having galactosemia. Since birth, Maureen has followed the lactose free diet, with some minor changes due to current research and acceptance.

Today, Maureen is 52, married, and is employed in childcare. Maureen and her husband, Bill have been married for 23 years and reside in Chalfont. PA (suburb of Philadelphia). Maureen is involved in many activities, such as with her Catholic Church, travelling, and spending time with her family and friends. Maureen has attended and spoken at many galactosemia conferences. Maureen recently spoke on a Congressional panel for rare disease awareness chaired by Senator Robert Casey of Pennsylvania and is a patient advocate for those with galactosemia.

Speaker(s): Natalie Whitington

Breakout Topic:

–    Conversations with your Gal Children

Conference Role: Talent Show Organizer

 Bio: Natalie has 25 years as a music educator, church music staff member, and children’s ministry leader. Through her transitions as a military spouse, she has been exposed to so many different families, children, cultures, languages, and talents. Natalie has current memberships with MTNA at the national, state, and district levels. She is currently a Nationally Certified Teacher of Music and completed certification as a judge at the state level. She serves as Secretary for her local MTA and performs in local music events. Her passion lies in music and children, and she has now built an extensive network of supportive parents and successful students–sharing the joy of music with the next generation.

Speaker(s): Anna Whitington

General Session: Fireside chat

Breakout Topic:

–    Conversations with your Gal Children

 Bio: I am a graduate of the University of Tampa! I enjoy using technology like Adobe Suite and Microsoft Office. My passion lies in the creative process of taking ideas, collaborating with others, and bringing those ideas to life in a 2D or 3D space.

Speaker: Tracey Miller

Breakout Topic:

–       Advocating for Your Child: Educational Planning for Children with Galactosemia

Conference Role:

–       No Whey Café- For youth groups*

Bio: I am the mother of two girls. My oldest daughter, Sydney, 18, has classic galactosemia. I have the unique perspective of being an educator and mother of a child with classic galactosemia. With certifications in New Jersey for Elementary Education and Teacher of the Handicapped, I have taught students with varying disabilities from preschool to eighth grade for 25 years in a variety of public school settings.

Conference Volunteer: Nick Casale

Conference Role:

–    No Whey Café- For youth groups*

 Bio: Nick has been attending conferences since Dallas in 2012 after his Joseph was born with galactosemia.  He has been co-leading the No Whey Café with Traci Miller since 2022.  Here children and young adults participate in games, learn about some of the safe foods available to them, have tastings of various treats, and make various foods.  Popular items tend to be “milk”shakes, “milk” tastings and decorating cookies!

Speaker: Gillian Sapia, RN, Galactosemia Foundation Board Member, Advocacy

General Session: Advocacy in the Rare Disease Community

Breakout Topic:

–       Rare Disease Advocacy

 Bio: As a patient advocate for Galactosemia Foundation, I work with a team of dedicated professionals to raise awareness and support for Galactosemia, a rare genetic disorder that affects the metabolism of galactose, a sugar found in milk and dairy products. I engage and educate caregivers on rare disease advocacy, partnering with organizations such as Everylife and Haystack Project to influence policies and regulations that affect the rare disease community. I also collaborate with other rare disease groups to learn and share ideas and best practices.

My core competencies include chronically critically I’ll, addiction recovery, ICU, and patient recruitment. I am passionate about making a positive impact on the lives of people living with rare diseases and their families, and I believe that I can bring diverse perspectives and experiences to the team. I am motivated by the opportunity to leverage my skills and knowledge to help the Galactosemia Foundation achieve its mission and vision.

Speaker: Brittany Cudzilo, Galactosemia Foundation Vice President

Breakout Topic:

–       Galactosemia 101 (Thursday)

–       Fundraising 101

Bio: Brittany is the mother of four daughters; the youngest two have Classic Galactosemia. Brittany and her husband Ben are located in Knoxville, TN and have been making connections with those around the area since their daughter Ansell was born. They are committed to reading the latest research and have a desire to understand Galactosemia to their greatest ability.

Brittany’s background is in secondary education, and she taught high school for 5 years. Since leaving, she has been at home raising their girls and is now working to build the GLOW fundraiser to connect Galactosemia families and raise awareness and support for the Galactosemia Foundation.

Brittany and Ben traveled to Denver for their first Galactosemia Foundation conference in July 2018, attended Orlando in 2022 and look forward to bringing their girls to Charlotte.

Speaker: Nicole Casale, Galactosemia Foundation President

Breakout Topic:

–       Galactosemia 101

 Conference Role: Conference Chair

 Bio: Nicole joined the board in 2014. She has attended the Dallas, Orlando, Atlanta, Denver and Virtual conferences and is looking forward to seeing everyone again at the next one.  She and her husband Nick live in Latham, NY, and have three children, Noah, Joseph and Reagan.  Joseph was born in March of 2012, and was diagnosed with classic Galactosemia at 5 days old. Like many he had a rough start, becoming septic and contracting meningitis at 9 days old which resulted in unilateral deafness.  Today he is doing great and works really hard at both taekwondo and gymnastics.  Currently Jojo receives speech, occupational therapy and special education services.  Nicole’s other two children do not have Galactosemia, they may or may not be carriers.

Nicole is a Program Manager of Housing Counseling and Wealth Building Strategies at Troy Rehabilitation and Improvement Program. She received her Bachelor’s degree in Elementary Education from University at Plattsburgh, and her Masters of Science in Special Education from the University at Albany.  Her hobbies include running, biking and swimming, as well as fundraising.

Speaker: Jodie Solari, Galactosemia Foundation Board Member, Media and Newsletter

General Session: Paul P.

Bio: Jodie Solari lives in Michigan with her husband Chris and their three daughters, Francesca and twins Amelia and Annabelle. Francesca and Amelia have classic galactosemia. Soon after Francesca was born Jodie knew she was going to be a mom with a cause and is passionate about educating others about Galactosemia. She advocates, educates and shares her family’s story through her Adventures of Galacto Girls Facebook page and blog. Jodie has hosted a Michigan event for Glow for Galactosemia for the last five years and has been known to show up to work in a zebra suit to raise awareness and funds for galactosemia. She first became involved with the foundation after attending the Atlanta conference in 2016. As the Communications chair for the Galactosemia Foundation, Jodie manages the website, social media platforms and newsletter.

Jodie is a Senior Content Writer for an energy company where she has worked for over 18 years. When she’s not writing for work or the Foundation she is creating blogs and content for Mid-Michigan Moms.

Conference Volunteer:  Mary Galactosemia Foundation Board Member

Conference Role: Conference Chair

Bio: Mary lives in Roseville, California with her husband Jimmy and three kids- Jakob, Madelyn and Ryan. Madelyn does not have Galactosemia but both Jakob and Ryan have Classic Galactosemia. Jakob was diagnosed at 4 days old and knowing there was a possibility that Madelyn and Ryan could have Galactosemia, Mary started them on Soy formula at birth. The first conference she attended was in 2008 in Chicago and has since been to all but two! Mary feels very fortunate to have found this community of families and Doctors that have helped her understand Galactosemia and have given her the tools to help her advocate for her children.

Conference Volunteer: Nick and Sabrina Elliot

Conference Role:  G-Force and Generation- G Facilitators

Bios:

Nick and Sabrina are proud parents of three young men, our youngest has classic galactosemia. Sabrina is a Registered Nurse in the OR at two local hospitals. She enjoys making jewelry and painting. Nick is an Instructional Coach (a teacher for teachers) at a local high school. He enjoys reading and working out. They volunteered at the 2016 to with the G Force and Generation G groups and have loved every minute of it since.

Conference Volunteer: Olivia and Kim Price

Conference Role:  Mighty-G Facilitators

Conference Volunteer: Cayden Halsbeg

Conference Role: Conference App facilitator

General Session: Fireside Chat

Conference Volunteer: Keith Topper, Galactosemia Foundation Board Member

Conference Role: Conference Pre-Planning and Conference App.

Bio: Keith Topper is from Long Island, New York.  Born in 1997 and diagnosed with Classic Galactosemia at five days old (a diagnosis that was later changed to Clinical Variant Galactosemia), Keith is the only Board member to personally be impacted by Galactosemia.  Keith struggled with speech apraxia as a child and has dealt with the diet challenges his entire life.  Although he joined the Board in 2020, Keith has served as a volunteer and advocate for the Galactosemia community in other capacities.  He has attended eleven conferences, presented at several of them, and has spoken at other events, including the 2015 Harvard University Metabolic Symposium and the 2016 Rare Disease Day Event at Simmons University.

In 2019, Keith earned his bachelor’s degree in Business Administration & Management with a concentration in Law from Boston University.  After graduating, he worked as a paralegal at a law firm in New York City for two years.  In May of this year, Keith graduated from St. John’s University School of Law. He is currently studying for the bar exam and will be taking it later this month.

In his free time, Keith enjoys spending time with his family (including his dog Mocha), exercising, and watching the Boston Celtics. As a Board member, Keith enjoys continuing his passion of advocacy by working with people throughout the community to make the Foundation as beneficial as it can be for everyone.

Conference Volunteer: Scott Saylor, Galactosemia Foundation Board Member, Treasurer

Conference Role:  Conference Pre-Planning

Bio: Scott holds a BS in Management from Gannon University along with minors in Human Resource Management and Marketing. At Gannon, Scott was also a 4 year starter on the varsity football team. Scott joined the Galactosemia Foundation board after the 2012 conference.

Scott resides in Chesterfield, Virginia with his wife Kristine, daughter Brooke and son Jake.  Jake was born in 2007 with classical Galactosemia. Soon after Jake was born the Saylor’s started “Fore the Cause” and have raised more than $200,000 for Galactosemia Foundation. Scott and Kristine devote a lot of time to Brooke and Jake’s sports interests.  Brooke is a competitive gymnast traveling across the United States to compete.  Jake plays football and wrestles. Besides rooting for his kids, Scott enjoys physical fitness including running and playing a number of sports.

Conference Volunteer: Cari Miller, Galactosemia Foundation Board Member

Conference Role:  Conference Pre-Planning

Bio: Cari Miller joined the Board in 2017. She is Aunt to two beautiful nieces; the oldest has Classic Galactosemia, and the youngest, is a carrier for Galactosemia. Cari has been attending the Galactosemia conferences with her sister-in-law Tracey, since the 2008 conference (and they have some interesting travel stories as a result)!!! Her nieces started attending in 2012 and thoroughly enjoy their time at the conference meeting other children and participating in all of the activities. Looking for a way to give back, Cari volunteered to become an active member of the Galcatosemia Foundation and was offered a Board position in late 2017.

Cari has extensive professional experience in the healthcare arena, having developed, implemented and directed healthcare projects for more than 20 years. Her activities in the healthcare arena focus on several areas, including working with physicians, practice teams, and hospital/health systems to identify ways to improve the care they are providing to their patients, including access to care, implementation of evidence-based quality care guidelines, and overall patient satisfaction and engagement with the healthcare system. She is currently working for a large health plan with a focus on developing strategic partnerships.

Breakout Schedule