Autoimmune Disease affects one in five people (AARDA – American Autoimmune Related Disease Association,) 75% of which are women. From the ones that most people know of like MS, RA, Diabetes, Lupus, to ones that you have heard of but had no idea it was an autoimmune disease or disorder like Raynaud’s Syndrome, Narcolepsy, Eczema, Aloepecia, to very rare that you only hear of if you’re one of the lucky ones to get it or have a friend of family member who has, like Wegener’s Granulomatosis – there are over 140 altogether. It is one of the top ten killers of women under 65 years old and female children. Even though it affects 20% of the population it often takes patients months, years or decades to get a proper diagnosis at the expense of eliminating the possibility to reverse the disease process. Autoimmune diseases (the more lethal ones) are often caught when the disease becomes acute and the patient is in serious distress or life threatening situation, whereas if caught early many autoimmune diseases can be reversible.
Autoimmune disease, previously perceived in popular culture as “an old person’s disease” is now pulling strong productive members of society out of the work force and rendering many in financial distress. There are babies younger than one who are getting diagnosed with diseases previously thought of as reserved only for the elderly in our population. These young children, once diagnosed, are on toxic, drug cocktails for their entire lives not only having to worry about the ravages of the disease but also the potential deadly side effects of the medicines that keep them alive.
Autoimmune Disease attacks different parts of the body sending patients to various specialists who deal with that area of anatomy. This is the reason we are so very segregated as a disease group. There is research going on within different disease groups but the information stays within that group and doesn’t have a chance to be reviewed by people who are working on the same problem from a different (disease) perspective .
Autoimmune Disease comes with a heavy price tag on individual lives, families, employers, insurance companies, health care costs, and overall cost to our economy, yet the attention and funding going towards research in this area is minimal compared to two other major disease groups. But nobody has studied this problem in Canada as a whole. We are basing all of our information from AARDA in the United States.
Raise public awareness of the widespread presence of autoimmune diseases and to raise funds to contribute to research to find the common thread unifying various forms of autoimmune disease in order to discover preventative measures and develop cures.
The foundation is designed to focus on:
- Raising awareness for autoimmune disease as a whole
- Support research that falls within the overall goal of the Foundation
- Build relationships and create partnerships with other foundations to create a unified disease group front
- Work with various organizations and partners to increase our reach and develop products that meet our mandate
- Create relationships that will benefit everyone and hurt no one.
- Work towards creating a Canadian database and solicit research towards Canadian epidemiology for this disease group
On The Ground
- Promote healthy choices to minimize risk and provide information and support for the diagnosed
Hana Dankov-Bye: Sister, entrepreneur, manager extraordinaire (Carpet Studio,) and the girl who’s backed up my crazy ideas since day one. Also one in five, living with Psoriatic Arthritis. She’s the doer. I’m the idea girl, Hana is the operations girl. Together we’re quite a team.
Susan Cesco: Manager of Friends of Jasper and a member of Rotary International Jasper amongst other things, to keep her busy. Sue always has a smile on her face and a mission in her mind, she is a force to be reckoned with. Also one in five, living with Multiple Sclerosis.
Steph Sophocleaus-Lewis: Another strong woman who is so busy it’s amazing she has time to do anything, but she finds a way. Steph is a hotel manager, a business owner and Yoga instructor at River Stone Yoga, as well as a marathon runner. All this seems like more than enough if you are not dealing with a debilitating Autoimmune Disease, but she manages it all while being another one in five, living with Rheumatoid (Idiopathic) Arthritis, which she has had since she was a young girl.
Richard Ireland: Addressed properly: His Worship, Richard Ireland, Mayor of Jasper, and also a lawyer in our amazing town. With those two credentials alone, Richard is automatically a very busy man, but he has agreed to be part of our group because he has seen first-hand the need to raise awareness for Autoimmune Disease and who can argue with the mission to find a common thread and a cure for the whole batch. Richard is also one in five, living with Vasculitis.
Marta Rode: I’m the last member of our board and am now on permanent disability from my disease and the subsequent treatment. I have worked in many fields but when I went on disability I was working for Parks Canada. I am the last of the one in five in our little group (that makes our situation a five in five) as I also have a type of Vasculitis, Wegener’s Granulomatosis (or the new name for it – Granulomatosis with Polyangiitis.)