Canadian AIDS Society seeks advisory committee members

The Canadian AIDS Society is undertaking a pan-Canadian needs assessment onWinding road HIV/AIDS in rural and remote communities. We are currently seeking individuals with community knowledge and experience to actively participate in a Rural and Remote Community Advisory Committee. We especially encourage applications from HIV+ people who live in rural or remote communities and people who provide services to them. (‘Rural’ is defined here as any community with a population of less than 10,000 people. ‘Remote’ refers to any community that is not within 2 hours commuting time of a rural community.)

This needs assessment will include a literature review, a national survey of rural and remote community organizations, key informant interviews, a series of webinars, a report containing policy recommendations, and an action plan. The Community Advisory Committee will determine the priority areas for exploration, and guide the needs assessment survey and key informant interviews. It will also provide feedback on the project report, and identify themes and presenters for webinars. The project will be completed by March 31, 2014.

Please send an email to Sue Scruton at sues@cdnaids.ca or a letter to the address below by May 7th, 2013 with your name, contact information and a brief description of your rural and remote HIV community knowledge and/or personal experience. Selected committee members will be notified by May 21st. All expressions of interest received will be held in the strictest confidence.

If you have any questions, please contact Sue by email or by telephone at 1.800.499.1986 ext 123.

Sue Scruton
Programs Consultant
Canadian AIDS Society
190 O’Connor Street, Suite 100
Ottawa, ON K2P 2R3
www.cdnaids.ca

HRSDC Study about the RDSP- Looking for Participants

BCCPD received a request from a research firm called Phoenix. They are conducting a study for Human Resources and Skills Development Canada (HRSDC) and are looking for participants:

RESEARCH PARTICIPANTS NEEDED

Are you a person with a disability or the immediate family member of a person with a disability?

The Government of Canada is conducting a study about government programs for persons with disabilities and issues related to saving for the future. If you or your immediate family member with a disability is in receipt of the federal Disability Tax Credit, you might be eligible for the study.

As a participant in this study, you will be asked to participate in:

1) a 2 hour focus group or
2) a 40 minute telephone interview.

In appreciation for your time, you will receive a $75 cash honorarium.

To volunteer for this study, please call: 1-866-770-4649 and leave a message with your name and telephone number. Someone will call you back to confirm your eligibility for the research.

This study is being conducted on behalf of the Government of Canada by Phoenix SPI, an independent Canadian research firm.

Personal information will be treated in complete confidence. 

Support ME, FM Services & Research Now

photo of flowersThere’s a new complex chronic disease clinic in Vancouver that will conduct research and support doctors and patients dealing with illnesses like ME (Myalgic Encephalomyelitis) which is wonderful news. The clinic has a chance to win a $150,000 grant for medical equipment from the Aviva Community Fund. There’s also a current petition to encourage the federal government to fund more ME research.

This is where you come in!

How You Can Help

1. Vote between December 3 – 12/12

  1. Register with Aviva: http://www.avivacommunityfund.org/ideas/acf13624 or log in using your Facebook account: https://www.facebook.com/AvivaCCDC?skip_nax_wizard=true
  2. Between Dec 3-12: Hit the “Vote Now” button and vote!
    1. Vote for “Medical equipment for a new chronic diseases clinic in Vancouver”. The clinic serves people with ME, FM, MCS and Lyme disease. The clinic could win up to a $150,000 grant for medical equipment.

Each registrant gets 15 votes total, but can only vote for a particular cause once a day. So you could vote a maximum of 10 times for the clinic.

Note that Aviva will send you follow up emails, but you can unsubscribe at any time or proactively uncheck your settings here http://www.avivacommunityfund.org/users/registration/profile.

2. Sign the Petition

Please also sign the petition to Canada’s Health Minister to fund research for people with ME. From that site: “Canadian research funding for ME/CFS in the last 10 years equals to 6 cents per patient per year for this disease.”

To sign, go to:

http://www.change.org/petitions/minister-of-health-of-canada-fund-research-for-patients-with-myalgic-encephalomyelitis

More on Why Your Help is So Needed

  • ME or Myalgic encephalomyelitis is recognized as a disabling nervous system disease, according to the World Health Organization classification of diseases. There is no cure, the cause of the illness is still unknown and there are no treatments–only symptom management.
  • Some experts in the field of ME/CFS say that this disease is just as disabling as progressive multiple sclerosis, congestive heart failure or late stage AIDS.
  • The 2010 Community Health Survey calculated that over 411,000 Canadians have the disease, 23% more than in 2005 and a staggering 205% more than in 2001.
  • No medical specialty is embracing this disease, resulting in patients left to their own devices or with a general practitioner who does not have the knowledge or time to deal with patients with this complex disease.
  • Patients are often stigmatized, largely because of the misleading and inadequate other name for the disease: chronic fatigue syndrome. Many people living busy lives can feel fatigued. People living with ME feel sick, fatigue being only one aspect of the illness.
  • Interest in researching ME is increasing and much work has been done in the last decade or so, but funding for research remains inadequate and imbalanced compared to other chronic illnesses.