Patient Partner Committee

What is the Patient Partner Priority & Planning Committee (P4C)?

The Institute of Genetics' Patient Partner Priority & Planning Committee (P4C) is a group of patients and caregivers with lived expertise of genetic conditions who are passionate about health research. P4C members represent regions across Canada and reflect diverse backgrounds and life experiences.

P4C members contribute to the patient partnership priorities of IG, leading efforts to ensure patients' perspectives are incorporated in relevant IG activities and funding opportunities and provide advice/support to IG's activities as needed. P4C members:

  • help define patients' priorities in health research;
  • inform their respective communities about IG, CIHR, and their work with P4C;
  • support the use of the state-of-the-art practices in patient partnership across IG's activities;
  • contribute to developing content on patient partnership (for example: training modules, website content) for IG and the broader CIHR community; and
  • evaluate progress and impact of P4C.

Frequently Asked Questions

  • 1. How can I join the P4C?

    There is a call for applications approximately once per year. To be sure you receive notification when applications are open, you can join our mailing list.

  • 2. Do I need a specific genetic condition to be part of the P4C?

    We aim to have as much diversity as possible within the P4C, so we welcome applications from people with any type of genetic condition and their caregivers.

  • 3. What is the time commitment for the P4C?

    The P4C meets every 3 months for a half-day (approximately 4 hours, including breaks). There may be materials to read before a meeting and a few emails to respond to between meetings. Meetings happen online, so no travel is required.

  • 4. Do P4C members receive compensation?

    Yes! P4C members are offered compensation for their time and expertise, according to the Institute of Genetics' Patient Partner Compensation Guidelines.

  • 5. What happens at P4C meetings?

    At P4C meetings, members will share updates about themselves, engage in learning and conversation with guest speakers from CIHR, Institute partners, and more. Members discuss health research issues relevant to the Institute of Genetics, bringing their lived expertise to the conversation.

    Members may be offered opportunities to represent the Institute at events and presentations, participate in working groups, and contribute to discussions and resource-sharing outside of regular meetings.

  • 6. Are there other ways of being involved with the Institute of Genetics?

    Yes! Please email our Team Lead for Patient Partnership, Jillian, to express your interest and find out what opportunities are available:

Who is the Committee?

Martine Bossous

Martine has been a teacher for over 25 years. She studied teaching French as a second language and is currently president of an education professionals’ union in Montreal.

She was diagnosed with ankylosing spondylitis in 2018, although she probably developed the disease many years earlier. She was followed by a now-closed rheumatology clinic, whose clinical approach she appreciated because it fostered collaborative work between physicians and researchers in rheumatology and specialized nurses. Her treatment covered the full spectrum of physical and mental health. She received her infusions there as well. The clinic also hosted conferences to reduce patient isolation.

Martine is someone who loves to share as well as listen. That is why she has tried to find another place where she can talk with other patients living with an autoimmune disease.

Martine is interested in how invisible illnesses can affect mental health. What are some possible solutions out there that can help maintain a healthy mental balance?

Tucker Bottomley

Tucker is a transgender male from the east coast with rheumatoid arthritis. He is currently in his early 30s. He was diagnosed at 22 and unmedicated for 8 years. Tucker is lucky enough to own his own tattoo shop so he can choose his own hours to be at in person but manage from home 24/7.

Up until he opened the shop in 2018, he lived on disability and with his parents. Outside of work, Tucker’s main hobby is producing and making music, although he is now restricted in his ability to play instruments. Tucker used to play in multiple bands and tour the country but is now too limited by his disability.

His main struggle is his physical health, which ties in with dysphoria and dysmorphia from being trans and overweight. Tucker has participated in a local anaesthesia patient partner research group since 2019, has co-conducted a workshop in the Dalhousie pharmacy school on inclusivity for the past two years, and continues to provide a safer space for queer and marginalised folks in the tattoo industry in his hometown of Halifax, Nova Scotia.

Catherine Côté

Catherine (she/her) lives with Marfan syndrome. She participates in various projects as a patient partner, including ones that train future health and social services professionals at the Université de Montréal. She is also the co-founder and vice-president of Constellation – troubles héréditaires du tissu conjonctif, an association that supports people living with a hereditary connective tissue disorder (HCTD) and their loved ones.

She is completing a master’s degree in political science, focusing on the communication between physicians and patients with chronic pain. She will soon start a doctoral degree in psychology to learn more about the lives of people living with an HCTD.

Anaïs Escobar

Anaïs (she/her) is a writer and therapist-in-training originally from Miami and currently living in Toronto. She lives with ankylosing spondylitis and is a passionate advocate for disability justice. As a therapist, she specializes in working with those living with chronic illness and disability as these are groups typically under-served in mental health spaces. In her free time, she enjoys knitting, cooking, weightlifting, and playing board games with her partner.

Reema Fanning

After experiencing recurrent pregnancy loss, Reema was diagnosed with genetic blood clotting disorders in 2009. In the years that followed, she would not only deal with life threatening complications from these factors, but several other health concerns which included the diagnosis of psoriatic arthritis and ankylosing spondylitis. Navigating her health with comorbidities, chronic pain and physical limitations has been a struggle through the years as a young wife, mother and professional.

Despite the challenges, it is important to Reema to try and maintain (and enrich) her quality of life by balancing diet, medication and lifestyle in a way that works best for her body. Reema is passionate about emerging health research and initiatives and is grateful for the opportunity to grow and collaborate with this inaugural committee!

Lori Igbede

Lori has lived in Saskatchewan for the majority of her life. She is happily married and has an adult foster daughter who adopted her when she was a teenager. Much to Lori’s delight, her daughter has blessed her with 4 smart and beautiful granddaughters. Before Lori became disabled, she was employed as a Disability Support Worker, working with individuals who had cognitive and/or mental disorders.

Lori has 24 different health conditions, mostly autoimmune disorders. Lori developed ankylosing spondylitis when she was a youth but wasn’t diagnosed until her mid-thirties, through a genetic test. Lori is no longer employed due to the pain and constant medical attention that she requires. Lori really enjoyed her work and misses it very much. When she’s not spending quality time with her granddaughters, you can find Lori outside enjoying nature. She has a passion for fishing and camping with her husband.

Emily LeBlanc

Emily is 23 and was diagnosed with cystic fibrosis at one week old. She has been on the orphan drug Trikafta since June 2020. Prior to starting this medication, Emily struggled a lot with her health. However, Trikafta has given Emily back her life, and her condition is now very well managed.

Emily will be graduating from Carleton University in June 2024, with an Honours Bachelor of Public Affairs and Policy Management with a Concentration in Social Policy. Emily is currently working part-time as a student for the federal government and is hoping to pursue a career in health policy.

Lynn Mendonza

Lynn is the mother of a child with Dravet Syndrome – a rare genetic epilepsy caused by the mutation of the SCN1A gene. Dravet syndrome is a developmental and epileptic encephalopathy and is part of a group of severe epilepsies with frequent and difficult-to-treat seizures and significant developmental delays.

Common issues associated with Dravet Syndrome include dysautonomia, sleeping difficulties, chronic infections, and more. Lynn’s daughter was diagnosed when she was a year old after several status seizures that required multiple hospitalizations. Lynn and her family are immigrants and moved to Canada in 2019 so that they could access a life-saving drug. They currently live in Toronto.

Neil Merovitch

Neil recently finished his PhD in the Neurosciences and Mental Health Program at The Hospital for Sick Children and the University of Toronto. Neil also holds a BSc in Biology and an MSc in Physiology and Biophysics from Dalhousie University.

His passion for patient engagement and health equity comes from living since childhood with dystonia, ankylosing spondylitis, chronic pain, and secondary conditions. Throughout his life, he has been hospitalized for extended periods, undergone numerous procedures, and has had to navigate the difficult transition from paediatric to adult care.

At SickKids, he is currently an EDI Champion, a member of the EDI and Accessibility Steering Committees, and co-chair of the Access, Accessibility and Inclusion Network. In addition, he serves on Temerty Medicine’s Disability Justice Working Group, the Centre for Independent Living in Toronto’s Disability Equity + Access Steering Committee and is active in the Dystonia Medical Research Foundation and the Canadian Association of Physical Medicine and Rehabilitation’s Anti-Ableism Special Interest Group.

Serena Thompson

Serena is a dedicated patient advocate for individuals with sickle cell disease. She has experienced years of humiliation, misunderstanding, and isolation in various settings, including schools, hospitals, and workplaces. In response to these challenges, Serena has actively engaged with the sickle cell community by joining committees and organizations that prioritize patient-centered care.

Serena's primary focus is advocacy and raising awareness about sickle cell disease. She achieves this through information sessions such as conferences, symposiums, seminars, and panel discussions. Serena collaborates with educational institutions, hospitals, community organizations, and media outlets like radio and television to spread awareness effectively.

In addition to her community advocacy work, Serena has held significant roles in various organizations. She served as the Interim President of the Sickle Cell Association of Ontario and was a member of the Minister's Patient and Family Advisory Council, Healthy Debate committee, and Medical Doctors Admissions, among others.

Currently, Serena is actively involved in Healthcare Excellence Canada, UHN ED Sickle Cell Working Group, Viewer’s Consolidation Patient and Family Advisory Committee, and just completed serving as a co-chair of Ontario Health's Sickle Cell Disease Quality Standard Advisory Committee. Through these roles, Serena contributes to improving healthcare practices and policies related to sickle cell disease.

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