The Standing Committee on Health Approves the Purple Day Act!

February 17th, 2012 · No Comments

Excellent news from the Purple Day for Epilepsy Facebook page:

“Canada: Standing committe on Health ( HESA) approved all amendments for Bill C-278 the Purple Day Act indentifying March 26 as a day for Epilepsy Awareness. A new copy of the bill will be printed and it will be presented in the House of Commons for the third round of debate soon. If it passes it will move forward to the Senate for final approval. Thanks to all you you who wrote the committee to share your story of what’s it like for you and/or a family member living with epilepsy. Stay tuned for the next update!”

This is fantastic! Purple Day is that much closer to being officially recognized by the Canadian Federal government! Keep up the great work everybody! Keep contacting your officials and maintain the Act’s momentum!

-Alex-

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Major Update from Purple Day Initiative!!!

February 10th, 2012 · No Comments

What follows is the update from Purple Day’s Facebook page:

“Canada: Please help !!! All written Submissions to the Standing committee on Health in Ottawa need to be in by Tuesday, Feb. 14th. Please write them and ask them to support Bill C-278 The Purple Day Act so it moves on to the next step.
Committees Directorate
Sixth Floor, 131 Queen Street
House of Commons
Ottawa ON K1A 0A6
Canada
Tel.: 613-992-3150
Fax: 613-947-3089
E-mail: cmteweb@parl.gc.ca

Bill C-278 once it passes all steps will mean March 26th will be officially recognized as a day for epilepsy awareness but you won’t get a day off work. As a bill it is recognized but once it goes through all steps it will eventually moves on to the Senate for final approval to make it law. It’s a big deal in Canada. We encourage Canadians who have epilepsy and also those who have family member living with epilepsy to share your stories of why endorsement of this act is important for persons with epilepsy. Feel free to include some of the stories you encoutered first hand that demonstrate the need for increased awareness of epilepsy so the public understands and learns more about epilepsy and seizures.
thanks”

Everyone email the Standing Committee on Health now! We only have a few days! Support Purple Day and Cassidy Megan!

-Alex-

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Update from the Purple Day Campaign

November 1st, 2011 · No Comments

Our friends at the Purple Day Campaign are making headway on getting Purple Day recognized as an official day of epilepsy awareness by the Canadian Federal Government. I will let a status update from their Facebook page do the talking:

“Canada: Private members Bill C-278 – The Purple Day Act will be presented in the House of Commons in Ottawa on or before November 14th. Bill C-278 will be voted on and if passed with then go on the next stage of this process. We are asking you contact the Federal Member of Parliament that represents you in Ottawa and tell them why this bill is so important to support for those living with epilepsy in Canada. It’s important they know about some of the challenges that people living with epilepsy face such as; the lack of public awareness, education, and stigma associated with the condition of epilepsy. Please reshare with others to help us spread the word. If this bill passes all steps it will mean that March 26th – Purple Day will be recognized as the “Official Day” for Epilepsy Awareness in Canada.”

You heard them, get out there and contact your Federal MP! I will be writing my letter in short order. Only together can we get Purple Day recognized by Canada! Lets raise awareness of epilepsy and fight stigma in society!

-Alex-

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European Written Declaration on Epilepsy is Approved

September 22nd, 2011 · No Comments

Directly from the website of the International League Against Epilepsy (ILAE):

“Declaration receives record number of MEP signatures

A Written Declaration on Epilepsy was passed in the European Parliament yesterday, 15th September 2011. Submitted by the European Advocates for Epilepsy Working Group in collaboration with Epilepsy Advocacy Europe – a joint task force of the International League Against Epilepsy and the International Bureau for Epilepsy, approval of the declaration marks a significant step in the efforts of both groups to increase the quality of life of people with epilepsy.

Written Declarations are a tool used by the European Parliament to launch a debate on a subject which comes within the European Union’s remit. In order to be passed, a declaration must be signed by a majority of Members of the European Parliament (in this case, 369 signatures). The declaration on epilepsy received 459 signatures, 90 more than the minimum required, the highest number received by any declaration in the current EU term. This is clear indication of the recognition of MEPs across Europe for the need for improvements in epilepsy healthcare.

Having received the required number of signatures to be passed in the European Parliament, the Written Declaration will be officially communicated from the Parliament to the Commission and to the Parliament of each EU Member State together with the list of signatories.

The declaration calls on the Commission and Council to:

encourage research and innovation in the area of prevention and early diagnosis and treatment of epilepsy;

prioritise epilepsy as a major disease that imposes a significant burden across Europe;

take initiatives to encourage Member States to ensure equal quality of life, including in education, employment, transport and public healthcare, for people with epilepsy, e.g. by stimulating the exchange of best practice;

encourage effective health impact assessments on all major EU and national policies;

First signatory to the declaration, Mr Gay Mitchell MEP stated: “Last February, we launched the first ever European Epilepsy Day. Seven months later, we successfully garnered the support of a large number of MEPs to pass this Declaration, which I have no doubt will raise awareness for epilepsy in Europe and improve prevention, care and quality of life of people with epilepsy. This Declaration is a step in the right direction for people with epilepsy, as well as their close family members.”

Epilepsy Advocacy Europe, in thanking the members of the European Advocates for Epilepsy MEPs Working Group and the national epilepsy organisations across Europe, who worked tireless over the last months to ensure the success of the declaration, believe that it is an important first step to address the current situation in Europe where there are 6 million people living with epilepsy, with 300,000 cases diagnosed each year. In Europe up to 40% of people with epilepsy still do not receive appropriate treatment and care yet, with appropriate treatment, up to 70% of people with epilepsy could be seizure-free.”

Here is the link to the article: article.

Also, here is the link to the document that was passed: the passed document.

This is an exciting step forward for improving epilepsy care in Europe, and potentially the world! Congratulations to our European counterparts and the epilepsy community at large!

-Alex-

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Survey on Impact of Epilepsy

August 19th, 2011 · No Comments

IT’S YOUR CHANCE TO BE HEARD!
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Share your voice!

Canadian adults with epilepsy are invited to participate in a Canada-wide survey:

The Impact of Epilepsy on Canadians

Take a few minutes to fill in this questionnaire that explores how epilepsy impacts health and access to treatment and care.

We need to hear from you!

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