Sue Faber, RN, BScN President, Co-Founder, Director Sue Faber is a Registered Nurse (BScN) and Co-founder and President of LymeHope. Sue is firmly committed to inclusive partnerships between patients and their advocates alongside healthcare providers, academia, research champions, industry stakeholders, and government and healthcare policy makers. Sue prioritizes the utilization of a ‘patient-first’ problem-based learning approach which involves active listening to first identify barriers, issues, and knowledge and research gaps, followed by strategic planning to develop an equitable, meaningful, achievable, evidence-based action plan which advances innovative research, development of best practice guidelines, transformative public policy, and promotes on-going stake-holder collaboration.
Sue's specific area of expertise and research is in the compilation and analysis of the literature that exists on maternal-fetal transmission of Lyme and congenital Lyme borreliosis; amplifying, supporting and powering urgent research initiatives to investigate this alternate mode of transmission with the ultimate goal of opening new doors to ensure that children and families affected are able to access appropriate care, treatment, and support.
Sue was invited by the Public Health Agency of Canada to review and provide comment/feedback on a draft of a Systematic Review on Gestational Lyme. In 2022, Health Canada updated it's website to acknowledge the documented risk of maternal-fetal transmission of Lyme disease, a significant step forward.
In 2018, Sue co-authored a nursing resolution for the Registered Nurses Association of Ontario – based on the needs and voiced concerns of Canadians with Lyme disease coast to coast. 'Patient First Treatment for Ontarian's with Lyme Disease'– which was passed at the annual 2018 AGM in Toronto. Sue was awarded the RNAO HUB Fellowship award in 2019 and her advocacy work was a featured story in the RNAO journal, The Registered Nurse.
In June 2022, Sue and colleagues co-organized and c0-chaired a Banbury meeting (scientific think-tank) on Perinatal Transmission of Lyme disease, supported by the Steven & Alexandra Cohen Foundation with goals of expanding innovative and collaborative research and partnerships specific to this alternate mode of transmission.
In 2023, the 2022 Tickborne Disease Working Group Report to Congress was published which includes a section (p.49-51) on Lyme disease and pregnancy, including this statement: 'The development of evidence based interim clinical guidelines for Lyme disease in pregnancy are needed and could provide health care practitioners with resources and guidance in several important areas. These include (a) clinical evaluation and treatment of Lyme disease in pregnant persons; (b) evaluation of the fetus in pregnant persons with a Lyme disease diagnosis during pregnancy; (c) clinical evaluation and testing of infants born to persons diagnosed with Lyme disease during pregnancy; (d) recommended long-term follow-up for infants with possible congenital Lyme disease infection; and (e) recommendations for histological examination/ testing of placenta, umbilical cord, and/or products of conception or other autopsy samples. All of these guidelines could be updated with the emergence of new research or clinical findings.'
Sue is honoured to collaborate with colleagues from McMaster Midwifery Research Centre in ground-breaking research on Lyme disease and Pregnancy.In November 2022, a new research paper titled. 'Lyme borreliosis in pregnancy and associations with parent and offspring health outcomes: An international cross-sectional survey' was published. In February 2024, a second research paper titled ' Perinatal transmission of Lyme disease: A qualitative study investigating the research priorities of patients with Lyme disease in pregnancy' was published.
Conferences/Webinars/Presentations on Maternal-Fetal Transmission of Lyme disease:
(May 2023) Penn State University College of Medicine, joint departments of Maternal Fetal Medicine and Neonatology: Weekly Perinatal Conference Lecture Series. Guest Lecture: Perinatal Transmission of Lyme disease- Past, Present and Future Direction.
(April 2021) Project Lyme/Mothers Against Lyme Lyme and Pregnancy webinar alongside presenters from the NIH + NICHD
(May 2021) Guest blog on Lyme and Pregnancy for the Lyme disease Association (LDA) (May 2021)
(2020) 5th Annual LymeMIND Virtual conference - Icahn School of Medicine at Mount Sinai, Cohen Lyme & Tickborne Disease Initiative - Mothers and Children Panel.
(2019) Target Lyme Ontario Symposium
(2019) Lyme Western New York (WNY) Symposium on Lyme disease
(2019) International Lyme and Associated Diseases Society (ILADS) Scientific Conference
(2019) 4th Annual LymeMIND conference - Icahn School of Medicine at Mount Sinai, Cohen Lyme & Tickborne Disease Initiative "Lyme Disease in the Era of Precision Medicine": Care Models for Mothers and Children
Publications: Omar A, Grenier LN, Marquez O, Faber S, Darling EK. Perinatal transmission of Lyme disease: A qualitative study investigating the research priorities of patients with Lyme disease in pregnancy. PLoS One. 2024 Feb 6;19(2):e0294265. doi: 10.1371/journal.pone.0294265. PMID: 38319904; PMCID: PMC10846734.
Leavey K, MacKenzie RK, Faber S, Lloyd VK, Mao C, Wills MKB, Boucoiran I, Cates EC, Omar A, Marquez O, Darling EK. Lyme borreliosis in pregnancy and associations with parent and offspring health outcomes: An international cross-sectional survey. Front Med (Lausanne). 2022 Nov 3;9:1022766. doi: 10.3389/fmed.2022.1022766. PMID: 36405612; PMCID: PMC9669415.
Tamara House Secretary and Director Tamara is a registered Real Estate Salesperson and lives with her family in Grey County, Ontario.Tamara looks forward to the day when all Canadian Lyme patients will be promptly diagnosed and treated appropriately here in our own country, with the same compassion and dignity afforded to all Canadians in times of health crises. Far too many families have been broken apart, bankrupt and desperate for help. Far too many children have lost their entire childhoods to these infections, being mislead, misdiagnosed and mistreated. Canadians enjoy an outstanding health care system with world class medical minds. There is a tremendous Canadian research network, The Canadian Lyme Consortium, that was recently founded to blaze a fresh trail in patient-centered Lyme disease investigation, driven to address the substantial gaps that exist in the understanding, diagnosis, and treatment of this complex, debilitating illness. With these in mind, Tamara has great hope for both her children, and all Canadian children afflicted with these stealth and devastating infections, that all will be given the opportunity to realize their full potential, hope for increased awareness and understanding, education, research, advancements in treatment, and eventually, a cure. Laura Falle – Board Member Tina Human – Board Member
Jennifer Kravis, B.A., LL.B Co-founder and volunteer, LymeHope Jennifer is a lawyer and former Bank executive whose family, like so many other Canadian families, has been affected by Lyme and other tick-borne diseases. Jennifer and Sue co-founded LymeHope with a vision to amplify and represent the voices of Canadian patients and families affected by Lyme disease and to effect positive change through the development of multi-stakeholder partnerships, education, advocacy and promotion of evidence-based research that is aligned with patient needs and preferences. Jennifer is one of the co-authors of a report entitled The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis: Edition One and was part of a global initiative to raise Lyme-related human rights concerns to the United Nations Human Rights Council in Geneva, Switzerland in 2018.
Jennifer is the past President and a former director of LymeHope, and continues to be a volunteer and supporter of the organization.
