The Mission of Cystic Fibrosis Canada is to help people with cystic fibrosis. To this end, we fund research towards the goal of a cure or control for CF, support high quality care, promote public awareness of the disease, and raise and allocate funds for these purposes. The Edmonton and Northern Alberta Chapter is one of the 50 Chapters across Canada which are a part of this organization.

Our Chapter is made up of approximately 200 families. Chapter members include parents, grandparents, relatives and friends, CF champions, and many unrelated volunteers. The Edmonton & Northern Alberta Chapter board oversees many of the chapter fundraisers.

  • President
  • Treasurer
  • Secretary
  • Vice President of Fundraising
  • Vice President of Publicity & Promotion
  • Directors
  • CF Clinic Liaison
  • CF Adult Liaison
  • KIN Liaison

The Edmonton Chapter benefits enormously from being part of a nationwide organization. Chapters across Canada combine with the Kinsmen, Kinettes, and Shinerama students. The success has been overwhelming, making Canada the best country in the world to treat someone with cystic fibrosis. 

What Do We Do?

Regular board meetings are held the first Tuesday of each month in the chapter office located in room 205 of St. James Elementary Catholic School at 7814-83 Street, Edmonton. The Annual Information Meeting is usually held in March.

The Board actively develops fundraisers and implements these within the communities we serve. It is also our responsibility to provide public education to promote cystic fibrosis awareness.

The Board of Directors, with the help of a limited volunteer base, has been quite successful in fundraising. Last year the Chapter was able to designate a significant sum of money for the CF clinic, clinical research and lung transplants. These funds were raised through the hard work and dedication of only one third of our 200 families. In order to continue to make a difference in the lives of our children by improving medical care and increasing their life expectancy, we need more people to be involved with raising funds to support these programs.

What Can the Chapter Do For YOU?

The Edmonton & Northern Alberta Chapter can provide support for you and your family in dealing with the effects of cystic fibrosis, and we can provide you with a means to fight the disease in a way that will benefit everyone affected by it.

In providing you and your family with support, we offer reliable and accurate information about the disease. This information is available in two locations:

  • on the website of the national office of Cystic Fibrosis Canada at www.cysticfibrosis.ca
  • through printed pamphlets kept on hand in the chapter office:

    •  
    • Cystic Fibrosis in Canada
    • Your Child and Cystic Fibrosis
    • A Teacher’s Guide to Cystic Fibrosis
    • Sexuality and Cystic Fibrosis: Information for Adolescents
    • When a Parent has CF: Explaining your illness to a child
    • Cystic Fibrosis and Lung Transplantation

We also provide support through opportunities to meet other CF families, as follows:

  • Chapter fundraisers (especially your local Great Strides Walk) are staffed by volunteers, mostly people from CF families
  • Chapter membership provides you with the newsletter sent out quarterly and reporting about both recent and upcoming chapter activities and events
  • Lisa Grono, a CF mom, is willing to receive e-mail from parents who would like to speak with another CF parent. Just click the following link- Lisa Grono.

Lisa is also part of the Facebook group at “Cystic Fibrosis Support Group for Edmonton/Northern Alberta”.

Finally we provide you with a means to fight the disease in a way that will benefit not only your own family, but everyone affected by CF. By becoming involved in chapter fundraisers which raise funds for scientific, medical and clinical research, you will make a difference for others.

Why Volunteer?

The Chapter is always looking for individuals to offer their time. Regardless of the contribution your help is always appreciated and needed. With your help in the area of fundraising we can raise money necessary to supplement the weekly CF treatment clinics held at the U of A Hospital, promote research and support the lung transplant program. The success of these touches the lives of your children in the provision of ongoing quality care and through the quest to find a cure. Ultimately, we are all working towards the common goal: to find a cure for this devastating disease.

Caring for a child with CF can be overwhelming, but the support and fellowship of others in the same situation is comforting. Many of the volunteers at our fundraisers face similar issues and easily share their experiences and how they cope.

Please give some consideration to donating some time to support your local Chapter.
Become involved by contacting Kathy Irvine, Community Development Manager, at the CF office at (780)466-2265 or at info_edmonton@cysticfibrosis.ca

 

  
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