June 15, 2019

About Us

The Snyder-Robinson Foundation was formed in 2014 by the parents of children diagnosed with SRS. Our mission is to advance medical and scientific research relating to Snyder-Robinson Syndrome and related disorders, in order to find a cure or treatments that will improve the lives of patients. The Snyder-Robinson Foundation is a 501(c)(3) nonprofit organization.

 

Board of Directors

Mark GallagherDr. Mark A. Gallagher is a Professor of Practice in operations research at the Air Force Institute of Technology (AFIT) in Dayton, Ohio. Mark has four Snyder-Robinson Syndrome (SRS) brothers (two living) and two SRS nephews. Mark is the guardian of his brother Ted. Mark has served three years as a director on the SRF board before becoming Chair in 2019. Mark also served seven years on the Military Operations Research Society (MORS) board of directors including Vice President for Societal Affairs and is a MORS Fellow. He is currently on the Council for the Military and Security Council and a past Prize Chair for the Institute of Operations Research and Management Sciences (INFORMS). Mark has thirty referred publications. For more information, see www.linkedin.com/in/gallagherma.
Dr. Mary Jo Kutler is a general pediatrician who founded and served as the medical director of Ahwatukee Pediatrics, PC in Phoenix, Arizona for 26 years. She graduated from NYIT College of Osteopathic Medicine and completed her pediatric residency at Phoenix Children’s Hospital / Maricopa Medical Center. She has been active in precepting third and fourth year medical students for their general pediatric rotations since 1994. Mary Jo has a passion for the special needs patient with complicated medical requirements, and as a result her practice included caring for these children. She was known in the community for her expertise, attention to detail and her ability to navigate challenges faced by this unique patient population and their families. She was acutely involved in the care of two brothers with Snyder-Robinson Syndrome for 24 years, and has developed an in-depth understanding of issues faced by SRS patients. Mary Jo is also the Principle Investigator for the Foundation's Natural History Study, which will help to better characterize and understand SRS.
Dr. Tony Pegg is Evan Pugh Professor of Cellular and Molecular Physiology Emeritus, Pennsylvania State University College of Medicine. He has extensive experience in research into the synthesis, metabolism and functional significance of polyamines. He has published more than 300 papers in this field dating back to the mid-1960s when he characterized all of the enzymes in the mammalian polyamine biosynthetic pathway including spermine synthase, the enzyme defective in SRS. More recently, his laboratory published studies on the structure and mechanism of the human spermine synthase and collaborated with Charles Schwartz in studies showing the defective activity of this enzyme in cells derived from SRS patients and the altered polyamine ratios in these cells. His group also published papers describing the altered physiology in a mouse strain with a chromosomal deletion of part of the X chromosome that includes the gene for spermine synthase. Learn more about Tony at: https://news.psu.edu/photo/257555/2013/02/11/dr-anthony-pegg

 
Dr. Robin Carlson is a clinical research director with demonstrated ability to work with thought leaders and lead/inspire interdisciplinary teams. She has expertise in creating and implementing complex medical device clinical trials in all phases - PMA, 510(k), marketing studies and registries. Robin has a PhD in Operations Research and is experienced in laboratory informatics, biomarkers, endovascular, orthopedic, and cardiovascular medical disciplines. For more information, see www.linkedin.com/in/robinscarlson.
jeff lindemanDr. Jeffrey Lindeman is an attorney who specializes in patent law, particularly relating to chemical, pharmaceutical, diagnostic and medical technologies. Jeff has founded his own law firm where he specializes in patent matters including patent prosecution, litigation and licensing, particularly relating to chemical, pharmaceutical, diagnostic and medical technologies. His particular area of expertise is patents on crystalline forms of pharmaceuticals, including polymorphs, co-crystals and other crystalline forms. Jeff earned a PhD in Chemistry from the University of South Carolina and JD, law degree, from George University Law Center. He serves as an Adjunct Professor at the American University Washington College of Law. For more information, please see https://www.linkedin.com/in/jeffrey-lindeman-941ab4/.
Tom DolanTom Dolan is currently the CEO of RURO, Inc. and began serving as a director on the SRF board in 2019. Early in his career, Tom was a region-leading sales executive at Bank of America. In 2010, Tom followed his interest in technology for life science, health care and, specifically, rare disease. For the last 9 years, he has been director of sales, then chief operating officer and, now, chief executive at laboratory software provider RURO, Inc. (www.ruro.com). Tom's international work with rare disease organizations has included multi-year projects in China, Italy, Australia and Switzerland, as well as significant operations in the UK, Qatar, Dubai, Egypt, India. For more information, please see https://www.linkedin.com/in/tom-dolan-103b8816/.
Michael Raymond: Michael is the father of a child with SRS. He is a founding member of The Snyder-Robinson Foundation, and has served as its Executive Director since it was formed in 2014. Michael is an attorney and a CPA, and has many years of experience volunteering for various nonprofit organizations. He previously served on the McLean Little League Board of Directors, where he helped start the Challenger Division, which provides opportunities for kids with disabilities to play baseball and softball with their peers.

 

Medical and Scientific Advisory Board

Dr. Charles Schwartz has served in a number of capacities as a research scientist throughout his career. He served for 14 years as the Director at J.C. Self Research Institute at the Greenwood Genetic Center in Greenwood, SC, and most recently as Senior Research Scholar. He has been affiliated with 8 professional memberships and has published 368 scientific journal articles and 13 books. He has conducted extensive research focused on the causes of X-linked intellectual disabilities, birth defects, and autism. In collaboration with Tony Pegg, PhD, Schwartz discovered that a defect in Spermine Synthase results in Snyder-Robinson Syndrome (2003). He is currently collaborating with Grace Zhai, PhD to define neurotoxicity induced by polyamine metabolic dysregulation. Dr. Schwartz is the Chair of the Medical and Scientific Advisory Board for the Snyder-Robinson Foundation.
Dr. Tony Pegg is Evan Pugh Professor of Cellular and Molecular Physiology Emeritus, Pennsylvania State University College of Medicine. He has extensive experience in research into the synthesis, metabolism and functional significance of polyamines. He has published more than 300 papers in this field dating back to the mid-1960s when he characterized all of the enzymes in the mammalian polyamine biosynthetic pathway including spermine synthase, the enzyme defective in SRS. More recently, his laboratory published studies on the structure and mechanism of the human spermine synthase and collaborated with Charles Schwartz in studies showing the defective activity of this enzyme in cells derived from SRS patients and the altered polyamine ratios in these cells. His group also published papers describing the altered physiology in a mouse strain with a chromosomal deletion of part of the X chromosome that includes the gene for spermine synthase.
Dr. Mary Jo Kutler is a general pediatrician who founded and served as the medical director of Ahwatukee Pediatrics, PC in Phoenix, Arizona for 26 years. She graduated from NYIT College of Osteopathic Medicine and completed her pediatric residency at Phoenix Children’s Hospital / Maricopa Medical Center. She has been active in precepting third and fourth year medical students for their general pediatric rotations since 1994. Mary Jo has a passion for the special needs patient with complicated medical requirements, and as a result her practice included caring for these children. She was known in the community for her expertise, attention to detail and her ability to navigate challenges faced by this unique patient population and their families. She was acutely involved in the care of two brothers with Snyder-Robinson Syndrome for 24 years, and has developed an in-depth understanding of issues faced by SRS patients. Mary Jo is also the Principle Investigator for the Foundation's Natural History Study, which will help to better characterize and understand SRS.

 

Executive Officers

Katia Luedtke: Katia is the mother of a child with Snyder-Robinson Syndrome. Katia is an attorney, with a JD from Boston College Law School and an LLM from Georgetown University. Katia is a founding member of the Snyder-Robinson Foundation, and has served as its General Counsel since it was formed in 2014.
Frank Marchetti: Frank is a father of a child with Snyder-Robinson Syndrome. Frank’s wife Sharon has a brother and 4 uncles with Snyder-Robinson Syndrome and her family was the first to be diagnosed with Snyder- Robinson Syndrome in the 1960s. He is a founding member of the Snyder-Robinson Foundation, and has served as its Chief Financial Officer since it was formed in 2014. Frank owns and operates restaurants in Connecticut and manages a family owned real estate business.
Teri Koerner: Teri is the mother of two medically fragile sons with SRS, who has developed a passion for science, intertwined with advocating for SRS families. Previously, she served as an Assistant Vice President for a large bank, after graduating from Arizona State University. Teri is a founding member of the Snyder-Robinson Foundation, and has served as its Director of Research since it was formed in 2014. Teri has actively contributed to the development and ongoing efforts of the Natural History Study, and routinely interacts with researchers and clinicians. Teri is committed to improving the lives of those affected by SRS, and will continue this quest, in loving memory of her son Cody.
Cameron Hancock: Cameron has been involved with the Snyder-Robinson Foundation since 2015 and has served as the Director of Membership since 2018. Through the development of Membership, Cameron works to connect and expand the SRS community around the world and further the Foundation's cause by engaging its members in volunteer opportunities.
Christopher Abbott: Chris is the father of a child with SRS, and has served as the Snyder-Robinson Foundation's Chief Information Officer since 2015. Chris works to apply information technology resources to support the goals and vision of the Foundation. Chris is an engineer, and has been involved with web applications and technology since the 1990s.

 

Key Accomplishments (First 5 Years)

  • Created international community of SRS families and other research scientists.
  • Actively collaborating with a group of leading polyamine researchers (the polyamigos).
  • Established Website and Facebook Family Group.
  • Held Medical Conference in 2015.
  • Participated in Million Dollar Bike Ride (MDBR) from 2016-2019.
  • Raised funds for 8 Research Grants & Awards.
  • Established Patient Registry & Natural History Study.
  • Engaged Jackson Labs to generate a SRS knock-out mouse model.
  • Established presence in the rare disease community as a member of NORD.
  • Began dialogue with other patient groups and researchers to find common areas of interest in hopes of establishing alliance\consortium.

 

Governance and Financial Information

SRF Articles of Incorporation

SRF By-Laws (amended January 2019)

SRF 501C3 Determination Letter

SRF 2018 Tax Return

SRF Adopted Budget (Year End 3-31-2020)