Volunteer Leaders

Billie Jo Bogden

 

Billie Jo BogdenBillie Jo Bogden, Patient-Oriented Research Representative (POR) to the Canadian Institute for Health Research (CIHR) Strategic Patient Oriented Research (SPOR) Chronic Pain Network under the leadership of Dr. Norm Buckley, Nominated Principal Investigator, and the ILC Medical Director. The Patient-Oriented Research Committee is mandated to ensure that research projects funded by the Chronic Pain Network (CPN) align with the Network’s strategy. Billie Jo has expertise in policy, communications and intergovernmental affairs in the federal public service. She is currently working on local collective action project to assist patients through the many challenges ahead and is a dedicated volunteer with the ILC Charitable Foundation championing a unified patient voice.

Tanya Brown

Tanya BrownTanya Brown is a small business owner, holding diplomas in both 3D animation and video game art and illustration. Tanya is Co-Founder of Atlantic Ehlers-Danlos Syndrome Society (AEDSS), an official ILC Foundation chapter member covering the Atlantic Region, based in Halifax, Nova Scotia. After she and her daughter were given the diagnosis of Ehlers-Danlos Syndrome (EDS), Tanya realized there was a severe lack of resources, awareness, and information for families in Nova Scotia affected by EDS. Formed in 2013, AEDSS became an official chapter of The ILC Foundation in January 2015, expanding the network of support and knowledge for their member families. Tanya lives in Halifax, Nova Scotia with her daughter, who is training in classical opera. Both suffer with chronic pain and health issues, but continue to not only survive, but thrive, despite this.

Lynn Clark

Lynn ClarkLynn Clark is most notably known as an advocate with a passion to meeting the needs of the people she comes to know.  Whether in their real estate needs, as an agent that finds that perfect home that blends special accommodations, or in the population of people that are marginalized because of gaps within existing social service systems.  Lynn’s interest in becoming involved with the ILC was based on her personal experience where her daughter, Chelsea Clark, Gold Medal Paralympian, experienced underserviced and misunderstood chronic pain.  By the time doctors took the pain she was experiencing seriously, she had advanced stage cancer.  As an advocate, Lynn has represented Easter Seals in the position of Parent Council Special Education Advisory Committee (SEAC) with the Peel District School Board, and the Halton District School Board; Lynn chaired the March of Dimes committee to start the L.I.F.E. Program in Mississauga, with a 3-year Ontario Trillium Foundation grant, where the program was expanded in Toronto.  The L.I.F.E. Program is a day program for young people with physical disabilities who have finished school, to help them learn skills for employment and independent living.  During that time, a small group of families approached Habitat for Humanity Halton in a collaborative effort to provide 6 bungalow townhomes for young adults with physical disabilities.  Unfortunately the group disbanded due to illness; Lynn has provided a positive impact through her associations with Cruisers Sports for the Physically Disabled, Windrush Theraputic Riding Stables and Erinoak Children’s Treatment Centre where she introduced a summer riding camp to Erinoak Children’s Treatment Centre.

Liz Lindley

Executive Administration

Jacqueline Raposo

Jacqueline RaposoJacqueline came to the ILC Foundation with a strong belief in Family Centered Care and a desire to assist individuals living with complex, chronic health needs.  Having worked for over twenty years at ErinoakKids, Centre for Treatment and Development primarily coordinating special needs/respite funding and services for families, she brings with her vast knowledge and experience.  Jacquie was an integral part of the training and development of ErinoakKids, pilot respite program, in 1996, which has successfully grown into one of Central West Region’s largest respite program for children with physical, developmental and medically fragile needs.  Her diverse, multidisciplinary experience has allowed her to better understand the challenges families face, bringing expertise in identifying timely services and support with the recognition on the importance of collaboration to ensure streamlined and, optimal health services.  Jacquie knows that navigating the health care system can be difficult.  For families coming through ILC’s doors, they don’t have to make this journey alone: appropriate care and supports are available.

Ray Rodriguez

Technical & Creative Advisor

Ray RodriguezRay is a Program Manager with over 35 years’ experience in various technical and management roles in Trust, Insurance and Wealth Management businesses at RBC.  The ILC Foundation is just the latest organization to which Ray is contributing his volunteer time, having been involved in many capacities with the Ride for Heart, United Way, Oakville Soccer Club and most recently as VP Operations/ Tournaments Director with the Oakville Hornets, the largest girl’s minor hockey organization in Canada.  The passion and dedication of the ILC has shone through his personal friendships with the Smeenk family and reciprocally, those to whom that passion is dedicated.  He just had to get involved and work with this team! Ray & Janice moved to Oakville as newlyweds in 1992 and raised their two daughters in Falgarwood. They continue to live in and love our community as “almost” empty-nesters.

Nicoleta Woinarosky, BSocSc (Hon), MHK

Health Resources Consultant

After a 20 year career as a social researcher in the Canadian government, Nicoleta gave-up full time work as a result of EDS, but continued part-time volunteer work. In 2009 she began volunteering with the Arthritis Society, which promotes active lifestyle as a weapon against chronic pain and pain related mental health issues. For five years she was an Arthritis Self-Management Program leader, which involved teaching courses and workshops on Chronic Pain Management. From 2011-2014, she volunteered as an Exercise Coordinator with a small senior’s residence in Ottawa.

As a Health Resource Consultant for The ILC Chronic Pain and Ehlers Danlos Charitable Foundation (“The ILC”), since 2103 she keeps abreast of current health research findings and shares relevant information on chronic pain and EDS related topics with ILC peer leaders. She also provides evidence based information in response to questions about chronic pain syndromes, EDS, Chiari, craniocervical fusion, tethered cord surgery, MCAS, hydrocephalus, anxiety, sleep issues, non-drug pain management including exercise, etc. As a representative of the ILC and EDS in Canada, Nicoleta participates on the Physiotherapy Working Group for the EDSociety and co-authored “The Evidence-Based Rationale for Physical Therapy Treatment of Children, Adolescents and Adults Diagnosed with Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome,” published in the American Journal of Medical Genetics. She uses every opportunity to provide information about EDS to health professionals. She lives with EDS, chronic pain, and has had an improved quality of life due to cranio-cervical fusion and tethered cord surgery.

Drawing on her lived and volunteer experience, and her Master’s thesis in Human Kinetics (The Effects of Exercise/Physical Activity on Chronic Pain and Pain Related Mental Health Issues), Nicoleta has provided presentations on the physical and psychological benefits of exercising to government and academic audiences, senior residences, the Arthritis Society, and the ILC – EDS conferences.

The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome

The Effect of Exercise/Physical Activity on Chronic Pain and Pain-Related Mental Health Issues, In Computer Workers with Repetitive Strain Injuries.

  • Announcements

    ILC Centre of Excellence – Toronto Stay Tuned

    ILC Support and Accessibilities Centre specializing in EDS and related conditions that cause altered physical abilities – Stay Tuned

    For more information, contact
    Sandy@theilcfoundation.org

  • Research Projects

  • National Pain Strategy

  • Recent Articles

  • Upcoming Events

    1. Simcoe/York Ehlers-Danlos Syndrome Peer Support Group Meeting

      October 21, 2017 @ 12:00 pm - 2:00 pm
    2. ILC 5th Annual Ehlers Danlos & Chronic Pain Conference

      November 4, 2017 - November 5, 2017
    3. Ontario Peer Support Meeting – Toronto, Ontario

      November 4, 2017 @ 12:00 pm - 3:00 pm
The ILC Foundation

The ILC Foundation