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#StillStanding

July 9, 2017

$15.00 - $75.00

Supporting research into Ehlers Danlos Syndromes

Ophira’s single “Still Standing” is now available on a variety of platforms including iTunes and Spotify! All proceeds are being donated to The ILC Chronic Pain and Ehlers Danlos Charitable Foundation for the length of this campaign.

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What is EDS?
Ehlers-Danlos Syndromes (EDS) are a group of inherited conditions that affect the connective tissues in the body. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs.

EDS is a multi-system disorder and can affect the entire body.  There are 13 sub-types, each with their own unique presentation. Common symptoms tend to include chronic, widespread pain, joint dislocations and fragile skin with poor wound healing. EDS is also associated with several co-morbid conditions including Dysautonomia, Crohn’s, Colitis, Gastroparesis and IBS, Cranio-Cervical Instability, Chiari Malformation, Tethered Cord Syndrome and Mast Cell Activation Disorder.

The condition affects everyone individually, with its symptoms ranging from mild to completely debilitating and life threatening.  EDS is currently classified as a rare disease, with its prevalence being approximately 1 in 2,500 to 1 in 5,000 people, however recent clinical experience has indicated that it is more common than otherwise considered. EDS is grossly misunderstood and under researched, leaving individuals with the condition undiagnosed and without treatment for years, often with irreversible nerve and tissue damage.

To learn more click here.

What is Chronic Pain?
One in five Canadians, including children and adolescents, suffer from chronic pain.  It is estimated that chronic pain costs the Canadian economy $37 billion per year and is the third most costly health problem nationally.  Chronic pain, is pain that is constant or can be intermittent and is daily for a period of three months or more.  Individuals that live with chronic pain are often misunderstood by their family, friends, employers, schools and by many health professionals.  Long wait lists to see a specialist can be as long as a year or more.  There are gaps in access to care that includes community-based support.  People with chronic pain are at increased risk of a very poor quality of life.  Anxiety, depression, physical de-conditioning, poor self-esteem, social isolation and family and relationship breakdown are a concern and children and adolescents are not spared.

Pain in Canada Fact Sheet

What does The ILC Chronic Pain and Ehlers Danlos Charitable Foundation do?
The ILC provides a comprehensive peer resource network of community-based support offering programs and services that meet the emotional, social, and practical needs of people living with Chronic Pain and Ehlers Danlos Syndromes and for individuals who care for them.  The ILC programs are offered free of charge.

For more information visit www.theilcfoundation.org/home/

Your support will help give HOPE and:

  • Facilitate international meetings to expand diagnostic capabilities with an Upright MRI machine in Toronto – $25,000.  For more information on the needs of this special project, please  contact Sandy@theilcfoundation.org.
  • Develop The ILC medical adviser vetted Pain Management Resource Program – $50,000
  • Support collaborative efforts to develop an EDS and Chronic Pain Toolkit for Schools, Post-Secondary Schools, and Employers – $25,000
  • Fund a neurosurgical intern for research – $60,000
  • Fund The ILC 5-year commitment to supporting the Chronic Pain Network Strategic Patient Oriented Research Support the annual EDS & Chronic Pain National Learning Conference
  • Fund the EDS & Chronic Pain Symposium at Seneca College in collaboration with Georgian College and York University – $3,000

To learn more click here.

Ophira’s Story

While studying opera performance at the University of British Columbia, Ophira got an excruciating headache that didn’t go away. Her condition deteriorated drastically over the next several years, leaving her almost entirely bed bound, often unable to speak or move. It took 4 years of desperately looking for answers and treatment for Ophira to learn about Ehlers Danlos Syndromes (EDS) through a recorded lecture from The ILC & McMaster University annual EDS and Chronic Pain Conference. After seeking care in Canada with no success, Ophira travelled to the United States where she was immediately diagnosed with the condition and was rushed to a neurosurgeon who specializes in operating on EDS patients. Ophira underwent two operations that both saved and drastically changed her life. Ophira is now back in school, studying online at the Berklee School of Music and training in the Second City Conservatory Program, and The ILC Chronic Pain and Ehlers Danlos Charitable Foundation (“The ILC”) has helped connect her to a wonderful healthcare team here in Ontario that helps her manage the fluctuating symptoms of chronic illness. She is so thankful to have this opportunity to use her voice to raise awareness about EDS, and raise funds to support research here in Canada, so that no one else is dismissed and left to go through what she did to get diagnosed and access proper care.

To learn more about Ophira, head to her website and blog at www.ophira.ca.

How do I get involved?
If you’re reading this, you are already involved! By reading through the content on this webpage, and learning about EDS, you’re actively raising awareness about this poorly understood condition. Please make sure to donate what you can to support the development and much needed awareness for research, and  share with your family and friends  Thank you!

We’d also love to see you at our exciting and educational events including the Teletime Golf Classic and the EDS Learning Conference

To get in touch about becoming a volunteer, accessing our services, collaborating on a project, or just to say hi, please contact us here.

FACES OF EDS

Alissa

Autumn

Chris

Ilana

Jenny

Kait

Olivia

THANK YOU TO OUR SPONSORS

The ILC is so grateful to Grace O’Malley’s for providing support to the EDS community for this exciting song and video launch!  

Thank you to: Beddingtons, Second City Toronto, Private Records Studio, Arbonne, Starbucks, Burt’s Bees, Totum Life Science Health Club and Clinic on King W

Details

Date:
July 9, 2017
Cost:
$15.00 - $75.00
Event Category:
  • 2017 Conference Videos and presentation documents are now available here
  • 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

  • #StillStanding Campaign

    #FF0000 Raised $10,771 towards the $200,000 target.

    Donate now to help us reach our goal!



  • Upcoming Events

    1. Halifax Support Group Meeting

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

The ILC Foundation