BOARD OF DIRECTORS

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Christine Salmi

President & Co-Founder

Lauren Malko

Vice President & Co-Founder

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Chris Huff

Treasurer

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Christina SanInocencio

Board Member

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Mike Fasolo

Board Member

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Marni Warren

Board Member

Brian Broadbent

Board Member

Chrissy Wheildon

Board Member

 

Christine Salmi​, JD

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Christine Salmi is the Co-Founder and President of Coalition to Cure CHD2, also known as “CCC,” which is a nonprofit formed to help improve the lives of those affected by CHD2-related disorders by funding research necessary for uncovering a cure. Christine and her husband Dan live in Boise, Idaho with their two daughters, Riley and Danielle. Danielle, currently 19 years old, had her first tonic-clonic seizure when she was 9 years old. After visiting a slew of doctors all over the Northwest for a period of several years, finally at Seattle Children’s Hospital, following whole exome sequencing, Danielle was diagnosed with a CHD2 mutation thought to be the cause of her epilepsy, autism and other related health issues. Christine joined a private Facebook support group for CHD2 families where she met another mother, Lauren Malko, who also has a daughter with a CHD2-related disorder. Lauren and Christine decided to form a nonprofit to help find a cure for their daughters and CCC was born.

In her professional life, Christine worked as a trial attorney for a large international law firm and later as a deputy attorney general for the Idaho Attorney General’s Office. She has been active in her local community, serving on the board of two different nonprofits, one of which offered equine therapy for children with special needs. In addition to serving as a member of the Law Advisory Council for the University of Idaho College of Law and the Law Clerk Resources Group for the Ninth Circuit Court of Appeals, Christine also spent two decades representing, on a pro bono basis, local volunteers appointed by the court to represent children brought into Idaho’s foster care system. Christine recently hung up her law degree to devote her time and resources to help advance CCC’s mission to find a cure not only for Danielle, but for every child and family affected by CHD2-related disorders.

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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 symptoms. Lauren decided to take matters into her own hands. In late 2020, she called Christine Salmi, another mom who has 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 Malko

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 Regional Sales Manager for Jazz Pharmaceuticals. Lauren lives in 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.

 

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.

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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 33 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's research interests include health communication, health literacy, medical transitioning, and social support. She currently works as a rare disease consultant, qualitative researcher, and adjunct professor in communication. 

Christina resides in Long Island, New York. 

Christina SanInocencio, PhD, CPH, CNP

 

Mike Fasolo

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. 

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Marni Warren, MBA

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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.

 

Brian Broadbent has a daughter with mutations in both the Chaserr and CHD2 genes that cause her to produce too much CHD2 protein, which is the more severe phenotype for CHD2 related disorders. This diagnosis, achieved through whole genome sequencing, is the culmination of an almost 4 year diagnostic journey and was the result of a collaboration between the Rare Genomes Project of the Broad Institute and the Undiagnosed Diseases Network. Brian’s daughter is the first person in the world with a Chaserr mutation, which is a long noncoding RNA adjacent to, and believed to regulate, the CHD2 gene.

Brian currently runs a small digital marketing agency with his brother. Prior to transitioning to digital marketing, he was a portfolio manager at Highland Capital Management LLP and has also served in risk management roles at Goldman Sachs, National Westminster Bank, and Bankers Trust Corporation. Brian has a BS in Finance from Lehigh University and an MBA from the University of Texas at Austin. Brian is passionate about advocating for both the undiagnosed and those facing rare diseases. He also serves on the Board of the UDN PEER, the patient and parent advisory group for the Undiagnosed Diseases Network, a NIH funded research project by the Common Fund.

Brian resides in Dallas, Texas with his wife Julia, daughters Emma (5) and Claire (10), and cat Cash.

Brian Broadbent, MBA

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Christine Whieldon

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Chrissy Wheildon’s journey of discovery about her son Sam’s CHD2 deletion began when he was 14 months old in 2011. The myoclonic seizures disrupted his life and after numerous visits to various doctors in England, Germany and the Netherlands, she finally found the answer in 2017. She and her husband Matt were relieved to receive his genetic analysis from Guy’s and St Thomas’ Department of Children’s Neurosciences in London, England, and quickly joined the CHD2 Support and Research Group on Facebook for guidance and support. Through the attendance of webinars offered by CCC, Chrissy realized that there is hope for Sam’s future through research and precision medication therapy development. On July 1, 2021 her and her family began the 100 km cycling challenge to raise money for CCC. She has experienced tremendous public support and feels that her commitment and efforts alongside other dedicated advocates for CCC, a cure is attainable.

 

Chrissy lives in Ottawa, Canada and currently stays home with Sam (11) and Dani (14). She has a Bachelor of Science in Nutrition (BSN) and a background in a number of government positions through 18 years of living in various locations in Europe due to her husband’s military career.