BOARD OF DIRECTORS
In April 2010, Lauren and her husband John welcomed triplet girls to their family and their dreams of starting a family came true instantly. Two and half years later, one of their daughters experienced her first seizure. For six years, Lauren had her daughter go on a diagnostic odyssey taking every possible test, seeing numerous physicians and flying her to multiple states where they searched for a diagnosis and cause for her daughter’s Epilepsy and developmental delays. In December of 2018, they finally learned through an Epilepsy Gene panel that she had a spontaneous mutation of the CHD2 gene. With the diagnosis came a lot of unanswered questions, lack of resources and guidance on medication options. The diagnosis led Lauren to a patient and caregiver community but still offered no real answers to fix her daughter's issues. Lauren decided to take matters into her own hands. In late 2020, she called Christine Salmi, another mom who had a daughter with a CHD2 mutation and they decided together, they were going to build a non-profit whose main goal would be to fund research in order to find a CURE for CHD2 neurodevelopmental disorders.
Lauren has spent her entire professional career communicating with physicians in the pharmaceutical and medical device space. It wasn’t until 2017 though, where her connection between her personal life and her professional life found the ultimate synergy. Lauren is currently a Senior Neurology Account Manager for Greenwich Biosciences. Lauren lives in Chandler, Arizona and has previously served as the President and Vice-President of Seville Golf & Country Club’s Board of Governors. She also has volunteered as a Seizure Smart Trainer for the Epilepsy Foundation of Arizona. She received her B.A. in Communications from Rowan University.
Christine Salmi, JD
Christine Salmi lives in Boise, Idaho, with her husband, Dan, where she and her husband raised their two beautiful daughters, Riley and Danielle. Nine years ago, their youngest daughter, Danielle (who is now 18 years old), had her first tonic-clonic seizure at the age of 9, which was followed by more seizures scattered over the many weeks, months and years to follow. Eventually, Danielle was diagnosed with Epilepsy and later as autistic (high functioning) with intellectual and developmental delays. Christine and Dan took Danielle to see specialists all over the Northwest, including Boise, San Francisco, Portland and Seattle. It was at Seattle Children’s Hospital that Danielle, after whole exome sequencing was done, was diagnosed with a CHD2 mutation thought to be the cause of her epilepsy and other related health issues. Christine and Dan immediately joined a private Facebook Support Group for CHD2 families and were quickly introduced to a number of supportive families, including another mother, Lauren Malko, who also has a daughter with CHD2-related disorders. Lauren reached out to Christine and they both decided to join forces to create a nonprofit to raise money to find a cure for CHD2, and that’s how Coalition to Cure CHD2 was born.
In her professional life, Christine serves as a Deputy Attorney General in the Office of the Attorney General in Idaho in the civil litigation division. Prior to joining government practice, Christine was a trial lawyer in private practice for close to 20 years. In that role, she also represented on a pro bono basis local volunteers who were appointed by the court to represent children brought into Idaho’s foster case system. Christine has served on two local nonprofit boards in the past, one of which offered equine therapy for children with special needs.
Christine’s husband, Dan, is a molecular biologist who is also employed by the State of Idaho. He too has served on local committees designed to help children with special needs transition to adult life. In addition to being a great dad for Danielle, he is a spectacular resource to Christine by helping her understand the complex world of genetic disorders. Christine and Dan hope to use the knowledge they have gained from their professional careers, as well as their love for their daughter, to help fuel the mission of this nonprofit to find a cure not only for Danielle, but for every child and family affected by CHD2-related disorders.
Susan has dealt with her daughter’s CHD2 diagnosis since 2011 and it being one of the earliest cases documented. Susan and her husband Doug were not new to having a child with special needs as their son has special needs also. Susan became the lead administrator and moderator in June 2017 of the CHD2 Support and Research Group on Facebook and continues to lend support for families who have a family member with the CHD2 diagnosis.
Susan and Doug’s 18 years and continuing experience as a treatment level foster home that deals with children and youth with diagnoses including autism, ADHD, behavioral, PTSD, mental health and developmental delays gives her the knowledge and experience in the special need's forum. Thirteen years' experience as the Accounting Supervisor at Tarion, a non-profit organization, and current Finance Manager for a transportation corporation. Completed College programs in Business Management and Accounting. Susan and family currently reside in Whitby, Ontario, Canada.
Chris Huff, MBA
Chris has a son who is affected by the CHD2 gene mutation. Along with his wife, Elizabeth, Chris has been on a journey to understand the impact of this condition and give their son everything possible to help overcome its debilitating symptoms. The CHD2 family community has been a source of strength and hope, and as a founding member of CCC, Chris is determined to help advance research in the field with the goal of developing targeted treatments for the disease.
Chris works for Legal and General Investment Management in Chicago. He has a BS in Software Engineering from Fairfield University and a MBA from the University of Chicago Booth School of Business. Chris, Elizabeth and their two children reside in Chicago and are active members of various city and neighborhood organizations.
Christina SanInocencio, MS, CPH, CNP
Christina SanInocencio has been involved in rare epilepsy advocacy and non-profit management for 13 years. She is the founder and former executive director of the LGS Foundation and has a 32 year old brother living with Lennox-Gastaut Syndrome of unknown cause. She believes that finding the etiology of one's epilepsy is key to precision medicine. Ms. SanInocencio is currently completing her PhD in health communication from the University of Maryland with a research focus on social support in rare diseases, health literacy, and computer-mediated communication. She currently works as a rare disease consultant and adjunct professor in communication while finishing her doctoral degree.
Christina resides in Long Island, New York.
Mike Fasolo joins the board, sharing his passion for working to help improve the lives of those affected by the CHD2 mutation, and for the hope of one day finding a cure. Mike and his wife Lauren live in the suburbs of Chicago, and are the loving parents of a teenager who has been diagnosed with the CHD2 mutation and hope to help in any way they can. He previously has served on the board of the Center for Speech and Language Disorders, a Lisle, IL based non-profit focused on helping children with language and other developmental disorders. In his professional life, Mike is currently in an operations leadership role at Amazon, and has previously worked in a variety of leadership roles at Brunswick Corporation, Starwood Hotels, and Ford Motor Company.
Marni Warren, MBA
Marni Warren is the proud parent of Luke (15) and Mary Nell (13). In 2013 Mary Nell (age 5) began to have absence and myoclonic seizures and thus began the journey to find out the cause. After no conclusion from the Epilepsy Genetic Panel she and her husband, Mark, began their campaign for answers. They scoured the country seeing specialists at Duke University Hospital, NYU, National Jewish Hospital and even sought out biomedical, neutrogenomic and homeopathic solutions. Finally, after whole exome sequencing they got her diagnosis of CHD2 mutation and were told that it was rare and no protocols for treatment existed. Although it was their worst fear they at least had information and could then find the CHD2 community for support and furthering the cause for a cure. Marni is a strong proponent of looking beyond “symptom based” solutions to neurological abnormalities and advancing a comprehensive genetic approach to complex disorders like CHD2.
Marni currently stays home with her children but has a background in Finance and Strategic Planning working with Bank of America Securities, CoBank and Johns Manville Corporate Development. She has her BA from Miami University in Ohio and MBA from University of Denver. She has served on various boards including Epilepsy Foundation of Colorado, YMCA, Junior League of Denver, her local school and church. Marni resides in Greenwood Village CO.