Focus Groups on Opioid Use in Ontario (August, 2017)

The ILC Foundation would like to share this opportunity with you and would encourage you to pass it along to anyone from Ontario that you may know who is using Opioids to manage their chronic pain.

The Ontario Drug Policy Research Network (ODPRN) are conducting a research initiative and are currently recruiting to conduct focus groups in August. They have assured that they are going to have balanced representation at these focus groups.

For anyone who really wants to have a say… this is your chance! The only way that the study will accurately project the current challenges, is if we show up and be brave.

If you are interested, the contact information is below. However, don’t hesitate as they begin these groups soon and there is limited space available.

Dana Bandola
Knowledge Broker
Ontario Drug Policy Research Network

St. Michael’s Hospital,
30 Bond Street, Toronto, Ontario M5B 1W8

T: 416-864-6060 x76205 | E: |

Posted July 20th, 2017


Chronic pain management and health care of Aboriginal peoples living in Canada is a serious concern where inequities are seen across the continuum of care.

The ILC Foundation applaud proposed changes in policy development as it relates to their unique health care challenges defined in The Crisis of Chronic Disease among Aboriginal Peoples, by Dr. J. Reading PhD, at the Centre for Aboriginal Health Research at the University of Victoria, B.C.

“Community based interventions are now needed to focus policies and strategies, to ensure that we are making meaningful, long-term improvements across a wide range of health issues facing Aboriginal peoples.”

To help realize the vision provided in The Guidelines for Health Research Involving Aboriginal People (CIHR, 2007).

“The idea is to engage community collectives in a transition from the previous role of research subjects to that of actively engaged research participants and leaders…

 Through the development of research agreements, communities can engage in research and over time, a foundation of trust is expected to develop between Aboriginal communities and researchers

 The ultimate goals are to improve the health and well being of Aboriginal peoples through community based research that builds on the traditional health practices of Aboriginal communities and develops innovative programs and services, which better meet the needs of Aboriginal people…

 Aboriginal peoples’ health needs to shape Canada’s research agenda, focusing attention on the critical areas that could, once fully understood, contribute to improve Aboriginal peoples’ health.”

The changes being discussed are not going to improve overnight. But through Canada’s innovative partnerships plan, Aboriginal communities will share in and contribute to advancing care and improving health outcomes.

In this province, as in many across the country, there are significant gaps in Indigenous health care services across Ontario – in home and community care, in primary care both on- and off-reserve with concern on the care.

Increasing equitable access to health care through investments in the health and wellness of Indigenous communities is one of many steps on Ontario’s journey of healing and reconciliation with Indigenous peoples. See also Chapter V: Working with Our Partners for more information on Ontario’s Commitment to Reconciliation with Indigenous Peoples.

The First Nations Health Action Plan focuses on primary and hospital care, public health and crisis support.

As highlighted in Ontario’s First Nations Health Action Plan (OFNHAP), Ontario is investing nearly $222 million over three years, followed by sustained funding of $104.5 million annually, to address health inequities and improve access to culturally appropriate health services over the long term. While focused on northern First Nations, where there are significant gaps in health services, the OFNHAP also includes investments in Indigenous health care across Ontario in home and community care, primary care, and diabetes prevention and management, both on- and off-reserve.

Providing Health Care for Ontario’s Indigenous Peoples

Both federal and provincial governments provide health care services for Indigenous peoples in Ontario. All eligible residents of Ontario, including Indigenous people, are entitled to receive insured health services anywhere in the province. As well, some provincially funded health care services focus on specific needs of Indigenous people, both on- and off-reserve, especially in remote and northern communities. These include:

  • 10 Aboriginal Health Access Centres and five Indigenous-governed Family Health Teams across the province, which provide traditional healing; culturally sensitive primary and chronic care; and mental health, addictions and social support services.
  • Investing up to $30 million for the development and operation of up to 10 expanded culturally appropriate inter-professional primary care teams.
  • Physician services for 30,000 people in 28 First Nation communities in the Sioux Lookout region.
  • Aboriginal midwifery services (described later in this section).
  • Four on-reserve long-term care homes.
  • Air and land ambulance services and first response teams for First Nation communities.


Posted June 23rd, 2017

New ODSP Medical Reviews Start This Month

The Ministry of Community and Social Services is putting in place a new medical review process that will be a big improvement for people on ODSP. Starting this month, all medical reviews will be done using the new process, which includes new forms and better decision-making.

These changes are the result of many years of advocacy by ISAC, the community legal clinic system, and partners in the health care and disability sectors.

Medical reviews are an important part of the ODSP system that allows people with short-term disabilities to access critically important financial supports. You don’t have to be permanently disabled to get ODSP benefits, so a review is required for people with disabilities or medical conditions that could improve over time.

New forms will be used that are much more understandable and get at the real issue, which is whether or not the impairments that a person experiences due to their medical condition have improved since they were first approved for ODSP.

Until now, reviews were done using the same forms that were used for initial applications. This meant people effectively had to reapply for ODSP. The forms were also very confusing for health care providers to complete.

The new forms will let health care providers simply indicate whether or not “clinically significant” improvement has been made to a person’s impairments.

If there’s been no improvement, or none is expected, the health care provider’s professional opinion will be enough and the medical review will be complete. This will reduce health care costs by eliminating the need for medically unnecessary tests and specialist referrals that were often required under the old system.

More information will only be required if there has been improvement, or if the prognosis for improvement is unknown.

The forms also include a section for new medical conditions, as well as information that health care providers need about the disability-related reasons that the person was initially approved for ODSP.

The Ministry is also reviewing the files of everyone scheduled for a medical review to determine whether any new health-related information is required. In many cases, no new information is needed so no forms are sent out. This means the person on ODSP doesn’t have to get their health care provider to fill out any forms. It saves a lot of stress for the person on ODSP, and a lot of work for the health care provider and costs to the medical system.

Ministry decision-makers are learning from the file review process about how to be more selective when assigning medical reviews in the first place. This is reducing the number of people who will have to have a medical review in the future.

Other improvements in decision-making are also being made that are increasing the number of people who will continue to get ODSP benefits without having to appeal.

All of these changes will mean fewer people will have to get legal help to navigate the medical review process and appeal negative decisions. This will give legal clinic caseworkers more time to help people with other legal needs and save on costs in the legal clinic and appeal tribunal systems.

The Ministry will use the new process to increase the number of medical reviews being done each month, in order to reduce a significant backlog that built up over many years. Had the backlog been addressed using the old process, people going through medical reviews and their health care providers would have been subject to an unmanageable burden that would have also impacted the legal clinic system.

After many years of advocacy, we’re pleased that Minister Jaczek listened to community concerns and has worked to ensure this important change has happened.

Thanks to our partners: the legal clinic system’s Steering Committee on Social Assistance, the ODSP Action Coalition, the Ontario College of Family Physicians’ Committee on Poverty and Health, the Canadian Mental Health Association – Ontario, the Association of Community Health Centres and Regent Park Community Health Centre, and support from the Registered Nurses Association of Ontario.


Information about our advocacy on medical reviews is here:

The Ministry’s announcement about the new medical review system is here:

A story in the Toronto Star about the new process is here:

Posted April 12th, 2017

2017 EDS International Classification

In the last decade, growing attention has been placed on joint hypermobility and related disorders. The new nosology for the Ehlers-Danlos syndromes (EDS), identifies 13 different types of EDS, and highlights the need for an updated and more reliable criteria. For the first time management and care guidelines have also been produced for the co-morbidities that can occur within EDS and HSDs.

As part of this work, the terminology of joint hypermobility and related disorders is summarised and a group of hypermobility spectrum disorders is proposed.

For further information please visit the links below:

Posted March 18th, 2017

New Ehlers Danlos Syndromes publications

The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes

Posted March 17th, 2017

Rare Disease Connection

Tammy Stadt of the ILC York/Simcoe EDS Support Group raises awareness at the Rare Disease Connection event that was hosted in Barrie City Hall Rotundra. The event was to connect Rare Diseases, give the opportunity to educate the community and medical professionals while offering connections for persons living with Rare Diseases.

Link to news coverage of the event from CTV News Barrie

The participants of the Rare Disease Connection holding signs naming their Rare Diseases

Posted March 6th, 2017

Canadian Press Announcement for EDS Clinic – February 27, 2017

The ILC Charitable Foundation Ehlers Danlos Division team, including its medical advisers continues to work closely with the Ministry of Health, the Hospital for Sick Children and the University Health Network with the announcement of expanding clinics for people living with rare diseases and EDS.

Link to article

The ILC Charitable Foundation Ehlers Danlos Division Speech at the Ministry Press Announcement:

“Thank you Honourable Minister Hoskins and Honorable Minister Coteau, Dr. Pisters, Dr. Baker, Mrs. Kinnear, members of the Ehlers Danlos Syndrome Clinic, the EDS Leadership Panel and members of the press. Hello

Six years ago, when Rebecca and Kris Mills asked if the ILC Foundation would take on EDS and chronic pain as a permanent charitable focus, Rebecca and I were told by Canada’s leading pain specialists that EDS was so rare, they would never see it in the lifetime of their practice.

Today, with the advancement of awareness and education, of the 20% of Ontarian’s living with misunderstood chronic pain, it is estimated that as many as 1 in 100 will have EDS.

Through the advocacy of patients, who have publicly given voice to their complex healthcare needs, and to the Crawford family who shared their story through an 8000 signature petition, and through the support of the ILC medical advisers some of whom are here today, Dr. Juan Guzman, Dr. Roberto Mendoza, Dr. Norm Buckley, Dr. Allan Gordon who helped to champion this cause as co-chairs of the ILC EDS annual conference, yet most importantly, through Minister Hoskins initiating an EDS leadership panel and the outcome of today’s announcement of funding, for a dedicated EDS paediatric and adult care clinic at the Hospital for Sick Children and the University Health Network, HOPE is inspired!

It is important to note that there is a great need for research in to the cause and cure of EDS. There is a tremendous amount of work to be done to bridge gaps in the understanding of this complex condition but, with today’s announcement, a tremendous step has been taken in the right direction and should prove to be an excellence model for other provinces to follow. The ILC looks forward to supporting the clinic and the efforts to ensure that these patients no longer fall between the cracks of care in the community.

Minister Hoskins, your staff, and the specialists that have helped to make this happen, we thank you!

Photo: Susan Carleton, ILC Manager, Special Projects, Hon. Minister Eric Hoskins, Rebecca Mills, ILC Director, Sandy Smeenk, ILC Director, Dr. Juan Guzman, General Internal Medicine, Assistant Professor, McMaster University, ILC Medical Adviser.

Each year, the ILC awards a health professional with a CHRONIC PAIN & EDS AWARENESS certificate of recognition.

At this time, Minister Hoskins, we would like to invite you to join us to receive your award in recognition of your leadership to advance care to people of all ages living with the complex care needs of EDS. Thank you!”

Speech Audio

#ehlersdanlos #zebrawarriors #EDS

Quotes: “This is a very big step. You and the entire ILC team are the reason we have this outcome today.” Dr. Juan Guzman

Canadian EDS Charities and Support Groups


The ILC Charitable Foundation

Chronic Pain / Ehlers Danlos / Research Divisions
Advancing community based case to children and individuals with Ehlers Danlos Syndrome and Chronic Pain

ILC Simcoe/York Ehlers-Danlos Syndrome Peer Support Group

ILC Atlantic Ehlers Danlos Society

Posted February 27th, 2017

Pain BC hosting Provincial Pain Summit, February 17-19

From the Executive Director of Pain BC, Maria Hudspith

From February 17-19, Pain BC will host the Provincial Pain Summit, with financial support from the Ministry of Health and WorkSafeBC. Are you:

  • a person living with pain who’d like to contribute to the discussion?
  • a clinician passionate about best practice approaches to chronic pain? 
  • a policy maker with responsibility for some aspect of improving the lives of people in pain in BC? 
  • a leader in an organization that cares about people living with pain, including seniors or vulnerable populations? 

If so, please join us!

This event follows the first Provincial Pain Summit, which was held in 2011. That event provided Pain BC and our many partners with recommendations for action. Since then, we’ve been working collaboratively with the Ministry of Health, Doctors of BC, health authorities, NGOs, and others to implement the priority actions. 

 The Summit in February will focus on surfacing issues and developing solutions around five themes:  

  1. Primary Care: Increase the capacity of primary care providers to provide evidence-based pain assessment and management, including non-pharmacological approaches
  2. Vulnerable Populations: Enhance outcomes for people living with addictions, mental health issues and chronic pain
  3. Pharmacological Pain Management: Improving assessment, balancing harms and benefits and advancing appropriate pharmacological pain management for patients across the continuum of care
  4. Pain in Rural BC: Expand access to pain management (pharmacological and non-pharmacological) services in rural and remote parts of the province
  5. Seniors in Pain: Improve pain assessment and management (pharmacological and non-pharmacological) for seniors

The Summit will kick off on Friday night with the stories of people living with pain and a response panel that explores the implications of these lived experiences for programs and policy. Saturday will involve several interactive sessions – both large and small group – and result in priorities that will be taken forward into action planning by a smaller group of health system leaders on Sunday morning. 

There will be a comfort room, sponsored by PainPRO RMT clinics, available for people in pain who need to take a break. For those unable to attend, we’ll be posting updates on our social media channels (including live Facebook videos); search for #BCPainSummit to stay a part of the conversation. Attending the summit? Download the Pain BC app for updates, the schedule, and more!

The Summit is a pivotal opportunity in the larger effort to transform how pain is understood and treated in our province. Please join us and bring your experience and knowledge to the process.

Register Now!

Posted January 22nd, 2017

POTS syndrome is a medical condition doctors are only starting to recognize

Up to 50,000 people in Canada may be suffering from this energy-sucking condition, says Dr. Juan Guzman.

Read the article at the Toronto Star

Posted January 3rd, 2017

News Release – statement from Dr. Michael Tymianski, Division Head, Neurosurgery and Janet Newton, Interim VP and Site Lead Toronto Western Hospital, UHN

The ILC Charitable Foundation – Ehlers Danlos Division

Over the last few weeks, recent reports in the media related to a University Health Network (UHN) based neurosurgeon, Dr Shamji, has caused concern regarding the future care for patients with Ehlers Danlos Syndrome (EDS) at the UHN. We have been in touch with the UHN to clarify plans for ongoing care for patients who were referred and/or booked for surgery or consultation with Dr Shamji. Please find below a statement from Dr. Michael Tymianski, Division Head, Neurosurgery and Janet Newton, Interim VP and Site Lead Toronto Western Hospital, UHN:

“As you can imagine, the arrest of Dr. Mohammed Shamji has come as an enormous shock to his patients and to everyone here at the hospital. UHN would like to clarify the current situation with respect to access to spine surgeons for patients with Ehlers Danlos Syndrome (EDS) who were under the care of Dr. Shamji. The neuro/surgical team at Toronto Western Hospital has four skilled spine surgeons, each capable of doing treatments and assessments for complex spine patients, including EDS patients.  

We are currently re-assigning all of Dr. Shamji’s patients to one of our other spine surgeons for follow-up. We continue to care for EDS patients along with all of our other patients and, as is standard practice, are triaging all patients according to medical need.

Our immediate priority has been to contact patients who were scheduled for surgery or clinic appointments in the months of December and January. When this is complete, we will then begin to re-assign patients who are booked later in the year. Please know that every patient chart must be reviewed by a surgeon to align the right patient with the right surgeon. As we are adding patients to existing practices, the ripple effect of absorbing new patients is not insignificant; however, we are working as quickly as possible to ensure appropriate transfer of care, and a visit with the new surgeon in accordance with level of urgency.

As always, any patient who has an urgent medical situation should present at their local emergency room.

We look forward to continuing to provide care to you and are saddened by the recent series of events. Many thanks for your understanding and patience as we work through this matter.”

The ILC recognize and respect how hard the UHN is working to triage the most urgent cases and reassigning patients that had post-surgical appointments, including those that have been waiting for their referral appointments with Dr. Shamji.  We also acknowledge the loss in expertise that Dr. Shamji brought as a scientist in the lab work he was doing to study and advance understanding in chronic pain and EDS and look forward to learning how this work will continue. We will continue to work collaboratively with the UHN to advance the care and understanding of the EDS population.

Through the leadership of the ILC Foundation, both in the area of Ehlers Danlos Syndrome and Chronic Pain Diseases advocacy work, a joint EDS Clinic has been established at the UHN and SickKids. Collaborations among multidisciplinary specialists are taking place and we are confident that access to care will continue to improve, based on early diagnosis and treatments of this patient population.

One of the outcomes of the ILC & McMaster University Canadian Medical Education EDS conference and the EDS Clinic discussions, is the need to expand primary care education on clear diagnostic criteria for EDS, as noted by Dr. Kristianna Martiniuk, MD and ILC medical adviser.  “A better understanding of commonly associated conditions and of the condition’s prevalence in the general population is important. With improved case finding, education regarding appropriate referrals to specialized centers would be equally important to avoid delays in confirming the diagnosis and accessing care for individuals with EDS” said Martiniuk.

The good news is that EDS is beginning to be better recognized.  With the newly funded EDS Clinics in Toronto, for pediatric and adult care, there is a multidisciplinary focus on early diagnosis and treatments.

Dr. James Rutka, Chair of the Department of Surgery at the University of Toronto, co-Chair of the EDS Leadership Panel and medical adviser of the ILC, is in communication with international experts including Dr. Fraser Henderson, who has shared his expertise as a presenter at the ILC & McMaster conference over the past four years.  “It is encouraging to see the level of interest in this area of specialized surgery and among residents.” said Dr. James Rutka.

According to Dr. Fraser Henderson, “Ehlers Danlos Syndrome is a tragically under-diagnosed disorder of immense importance affecting one in every hundred persons of the population, and involving virtually every organ system of the body. It is the lack of diagnosis that results in failure to treat EDS at a young age, and the resulting necessity for more extensive treatments and surgeries when the patient reaches the third or fourth decade. The number of patients suffering from undiagnosed EDS manifest enormous medical-economic impact, substantially adding to the disabled of Canada. It is appropriate that Canadian neurosurgeons, who have been leaders in vascular, pediatric, spinal and epilepsy neurosurgery, have played a central role as the first in the world to establish a national center for EDS in Toronto. The EDS center represents an exciting opportunity to coordinate treatment, as well as scientific studies and economic impact data regarding the EDS population. The Center has drawn attention from the US, where multi-disciplinary specialists with strong Canadian ties have sought to collaborate to advance the cause and knowledge of EDS.”  Dr. Henderson is a world renowned neurosurgeon who is licensed to perform surgeries in the USA and Great Britain.  He has treated more than 1,200 EDS cases. He was mentored by Dr. Phanor Perot, who was trained in Canada by Dr. Wilder Penfield at the Montreal Neurological Institute. Dr. Henderson is leading discussions in the United States and Great Britain on the economic problem that EDS presents if not treated early.

According to Sandy Smeenk, Executive Director, ILC Foundation, “What we have to remember is that in this patient population, hope is what they hold on to most, especially when a neurosurgeon dedicates his or her interest to this area of specialized care.  When they are faced with experiences that takes hope away, hope is what they end up fearing most. Communication and validating the very real symptoms of health issues is critical.  We have to move past specialists saying ‘the pain is not real’ and get to evidence-based diagnostics and treatments.”

The ILC will continue to pursue the vision to provide a health integrated peer resource network, to keep patients informed. Initiatives that the ILC continues to champion are:

  • Advancing peer-to-peer and community based care for children and individuals with EDS and Chronic Pain
  • Expanding the annual ILC EDS CME Conference to include modalities of physiotherapy care and patient wellness focused programming
  • Host the annual conference in other cities and provinces in partnership with other advocacy groups
  • Facilitate the obtainment of upright MRI diagnostic capabilities at major centers beginning in Toronto
  • Supporting EDS and Chronic Pain Research
  • Awareness education through Department of Neurosurgery, School of Nursing, Social Work, College of Physiotherapy

Donate Today To Help Make A Difference

Posted December 23rd, 2016

  • Chronic pain support for children, youth, and teens
  • Upcoming Events

    1. Halifax Support Group Meeting

      October 15, 2017 @ 10:00 am - 12:00 pm
    2. Simcoe/York Ehlers-Danlos Syndrome Peer Support Group Meeting

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

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

      November 4, 2017 @ 12:00 pm - 3:00 pm
    5. Halifax Support Group Meeting

      November 12, 2017 @ 10:00 am - 12:00 pm
The ILC Foundation

The ILC Foundation