The ILC EDS Walk’n Wheel-a-Thon 2023
The ILC EDS Toronto Walk’n Wheel-a-Thon – 2023 SUNDAY MAY 28, 2023
Toronto Location: Martin Goodman Trail – starting point is at the foot of the Roncesvalles Pedestrian Bridge in the Sunnyside neighborhood of Toronto, directly beside the Palais Royale at 1601 Lakeshore Blvd. West.
Walk Start Time: 10:00 AM (please arrive by 9:30 AM so we can connect well and begin on time)
Contact: Cynthia Fromstein, email: Cynthia.Fromstein@gmail.com; Cell/Text: 416 520-1457
About The ILC EDS Toronto Walk’n Wheel-a-Thon 2023: Ehlers-Danlos Syndromes (EDS) is a genetic disease impacting the connective tissue that holds bones and ligaments together. Recurring joint dislocations and chronic pain, along with other complications, are daily life. There are 13 sub-types of EDS, many of which are rare. Research conducted on Hypermobile EDS at the Medical University of South Carolina Norris Lab reports a prevalence of 1:300 and is considered highly misdiagnosed and misunderstood. In Canada, The ILC healthcare education and patient learning conferences hosted since 2013 confirm there is a lack of awareness of EDS among doctors. Most significantly, there is a serious lack of medical treatment in Canada to manage the disease. We Need to Raise Awareness to change that.
There is no cure for EDS; symptom management is critical. My daughter and her peers have No access in Canada to EDS specialists – neurologists, neurosurgeons, cardiologists, and gastroenterologists that they desperately need. The single Ontario EDS clinic exists because of the advocacy and fundraising of The ILC Foundation. These young people are not looking for miracles but for improved quality of life.
We are walking and wheeling on May 28th to Raise EDS Awareness and funds to support their bright futures. Please pledge a walker-wheeler with your support. Better yet, Come Walk With Us! And if you walk, you can get your own pledgers and spread the word. We raised over $6000 last year, and You helped Make A Difference!
Funds raised this year will be used to support The ILC EDS educational programs as follows: i) conferences/webinars The ILC organize, host and fund; ii) Wellness Sessions providing helpful resources that include healthcare education through academic partnerships with Masters student placements; and Research, including with doctors with the GoodHope EDS Clinic.
If you can’t join us but want to pledge your support, link here to join my team with your pledge of support.
Or, mail your donation cheque made out to “The ILC Charitable Foundation” – Be sure to provide your information so that a tax receipt can be issued to you from The ILC. Cheques can be given to the Walk organizer on the day of the event or mailed to: Roger Lapworth, Treasurer, The ILC Charitable Foundation, 481 North Service Road West, Unit A14, Oakville, Ontario, L6M 2V6.
Or, make your cash donation given to the person you are pledging or to the organizer, with your information to receive your tax receipt.
Helping children and families with Ehlers-Danlos Syndromes and Chronic Pain
e-Visit The ILC to learn more about why this cause is important to me and what is being done to help make a difference – The ILC provides Support, Wellness Groups and resources that offer an opportunity for people to meet online and build a community of care while learning about EDS, its related conditions and the unique symptom management and coping strategies. The ILC also works in partnership with academia, clinicians, and researchers to improve care pathways while cures do not currently exist.
Thank you so very much for your support.
Cindy Fromstein, The ILC and Friends
