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PULMONARY HYPERTENSION ASSOCIATION OF CANADA ASSOCIATION D’HYPERTENSION PULMONAIRE DU CANADA


PHA Canada’s monthly electronic newsletter
Vol 2. No. 9 September 2012
 

In this issue:

AWARENESS MONTH 2012:
6-MINUTE WALK FOR BREATH

As fall quickly approaches, the Staff of PHA Canada is busy behind the scenes working on preparations for this year’s November Awareness Month Campaign. This year, we are very pleased to launch an exciting new program and signature fundraising event called the “6 Minute Walk for Breath”. This event is based on an idea proposed by PHA Canada member and PH parent, Shannon Reitor from Alberta, who suggested using a 6 minute walk event as an educational tool to bring awareness to PH and the challenges patients face. Using this concept, we will be launching our “6 Minute Walk for Breath” in the month of November, making it an accessible tool for anyone wishing to raise awareness and funds in their local area.

PHA Canada will be hosting some "launch events" at the beginning of the month and will also be encouraging you, the members of the PH Communicty, to get involved by organizing your own walk.

Walk kits will be available in mid-October for those wishing to participate and will contain all the materials needed to put on your event including: promotional posters, pledge sheets, PH fact sheets, t-shirts for volunteers, and more. We would like to challenge all members of PHA Canada to come up with a creative way to hold a walk in your community. Walks can be held in your workplace, your child’s school, as a community event, with your support group or with any other group to which you belong.

Watch our next issue of the Pulse for more information or pre-order your kits by contacting beaware@phacanada.ca.


* the graphics are a sneak-peak of the logos we will be using for the walk, which will be featured on all walk materials
 


WHAT ABOUT LEND A HAND?
You probably noticed that we did not mention the "Lend a Hand for PH" campaign, when talking about Awareness Month this year, and you may be wondering: What happened to "Lend a Hand"?

The "Lend a Hand" campaign was so popular amongst the international PH associations when we presented it at the International Leader's Summit during the International PH Conference hosted by PHA USA in Orlando, that we have decided to save the campaign to use during World PH Day, which is May 5. We are giving access to all of our materials for this campaign to associations around the world so that they can use it in their own countries if they so choose. We hope that this campaign will grow to a "hands for PH across the world" movement. More information about World PH Day and how you can get involved with the Lend a Hand campaign for World PH Day will be available early next year.


CALL FOR VOLUNTEERS  

We need your help!  If you are a PH patient who has undergone a 6 minute walk test in your clinic, we would love to have your help in creating our campaign materials. We are looking for feedback from patients in functional classes I through IV to assist us in preparing the materials for this campaign.  If you would be willing to share your experiences with us, please contact beaware@phacanada.ca.


This Month's Resource tip:
HOW CAN I GET INVOLVED IN MY COMMUNITY?

There are a number of ways that you can get involved this year to make this our best Awareness Month ever!  Hosting a 6 Minute Walk for Breath is just one of the many things that you can do to help bring attention and awareness to our cause.  Some other ideas for raising awareness include:
  • Sharing your story with your local newspaper – November is a great time to reach out to your local newspaper or television station to offer to share your story.  Never underestimate the power of sharing your story to educate others on what it means to live with PH. If you would like some help, PHA Canada offers media mentors: those who have previously shared their story with the media to help you get going. Get in touch with us to get started
     
  • Setting up a Personal Page – Creating your own personal page is an easy way to reach a number of potential donors right from the comfort of home!  Visit our website to learn how you can set up your own personal page and set a fundraising goal for the month of November.  This is a great way to involve your friends and family and you can also ask them to share your page with others.
     
  • Holding a “Milestone Celebration” – Looking for a unique idea to celebrate a milestone for a person who has everything?  Why not turn it in to an opportunity to raise funds and awareness of PH?  Host a birthday or anniversary party and ask that friends and family donate to PHA Canada rather than bringing gifts.  We can supply you with information to hand out to attendees as well as donation cards to be used for your event. Get in touch with our office today to find out more or to order your cards.
 
WHAT'S HAPPENING ACROSS CANADA?

HTAP QUEBEC TO HOST THIRD ANNUAL CONFERENCE IN SEPTEMBER
 
This year, HTAP Quebec will host the 3rd Annual Quebec Conference with the theme “Croire A La Vie” which translates to “Believe in Life”. The event will take place from September 21st to 23rd at Hotel Quebec in Quebec City. It will commence with a dinner on Friday night that includes entertainment. Saturday morning will open with a breakfast followed by the conference opening led by M. Denis Cormier, President of HTAP Quebec with an update from Jennifer Gendron, Regional Coordinator, PHA Canada. 
Several presentations will follow on topics including: understanding PH, current research, yoga and a support group for caregivers. 

An inspirational presentation will be given by M. Martin Deschamps and a tour of the research labs of the local hospital will also be included. 

Sunday morning, the conference will wrap up with a presentation by Dr. David Langleben on new therapies, followed by the Annual General Meeting of HTAP Quebec.  For more information visit www.htapquebec.ca or find them on Facebook at www.facebook.com/HTAPQ.

WESTERN REGIONAL SYMPOSIUM TO BE HELD IN VANCOUVER
PHA Canada is pleased to announce that we will be partnering with BCPHS to offer the first ever Western Regional Symposium in Vancouver in February 2013. This event will offer residents of the Western provinces the opportunity to attend a meeting closer to home and will be a chance to meet other patients and take part in educational sessions and seminars. 
 

 
The meeting will be held February 22nd to 24th at the Terminal City Club in Vancouver, BC.  The conference committee, consisting of BCPHS and PHA Canada Board members and staff, is currently working on details for this event.  Watch for more information in our next issue of the Pulse and save the date for this exciting event.
 

NEW FEATURE: INSIDE PHA CANADA
Based on the invaluable feedback from our members, who have told us that they are interested in learning more about the workings of PHA Canada we bring you a new feature: Inside PHA Canada.

This is a feature which will be included in each issue of the Pulse and in Connections.

If you have a question about some aspect of how PHA Canada works please send it to us at: thepulse@phacanada.ca

THIS MONTH'S QUESTION:
What exactly is the purpose of the Corporate Committee?


The Corporate Committee was established in order to help PHA Canada build relationships and create a level playing field amongst all of the companies involved in the treatment of PH.

PHA Canada believes that every patient should have access to as many effective PH treatments as possible and that the course of their treatment should be decided by their PH specialist. The Corporate Committee allows us to build a solid relationship with all of our industry partners while remaining impartial and not "favouring" one treatment/company over another.

While as a patient association there are things on which we do not neessarily see eye-to-eye with industry, there is a whole area of common interest, such as early diagnosis for patients, awareness and education of the disease, advocating for access to treatment etc. on which we do agree: our reasons for pursuing these things may be different but we all want the same results.

The Corporate Committee operates in that area of common interest. The Committee is open for membership to any industry partner who is involved in the manufacture or distribution of PH specific treatments. Members pay a yearly due to sit at the table. The Committee meets face to face twice per year. At these meetings, each member may bring up any issues, which they are facing with regards to the field of PH (these would be issues such as access to treatment for patients, reimbursment etc) and discussions on how we can all work together to continue to educate the public, physicians etc. are held.

While the members of the Committee may be competitors in "real life" they are asked to check their competitive hat at the door when they sit at Corporate Committee meetings: we work in the realm of our common interests to help further the cause of PH for our community.

The following members have been involved in the Corporate Committee since it was established in 2008:
Actelion Pharmaceuticals
Eli Lilly
GlaxoSmithKline
Pfizer
Shoppers Drug Mart Specialty Health Services
Unither Biotech

A new member has joined as of September 1, 2012:
McKesson Specialty

Each member company may have up to two representatives at the table at any meeting; there is one "main" designated representative and the second may be their alternate should they not be able to attend. Because these two individuals are the "representatives" of the company to PHA Canada, it lets us get to know each other and build solid relationships. While each company can have up to two representatives, each company has one vote in matters that require voting.

Other than the member companies, PHA Canada's president, National Manager and the Chair of the Medical Advisory Committee are generally present at meetings. Other Board members may attend if they desire.

The Committee has a Chair person and a Chair-elect (the Chair role switches yearly, and rotates through all of the companies). The Chair position changes in conjunction with PHA Canada's AGM in September. A new Chair will take the reigns as of September 8, 2012. The outgoing Chair, who has served on the Committee for the past year is Allison McLean from Unither Biotech. The Chair for 2012/2013 will be Christian Marcoux representing Shoppers Drug Mart Specialty Health Services. A Chair-Elect will be selected at the September 8 meeting.

Corporate Committee members are expected to participate in supporting PHA Canada programs and projects beyond their annual dues and receive requests for sponsorship from PHA Canada on a yearly or per-project basis (depending on their preference).

In summary: the purpose of the Corporate Committee is to allow for a collegial and unbiased relationship between the pharmaceutical industry and PHA Canada that operates in the realm of our common interests for the benefit of the PH community.
 


PENNIES FOR PH IN THE LOVELY HAMLET OF COLDWATER, ON

Erin Dolan, member of the PHA Canada, Toronto Chapter PH Support Group and sister of PH patient Emily Dolan, is a tireless advocate and fundraiser for PHA Canada.

To that end, she invited her boyfriend’s mother and store owner, Carolyn Brandon to participate in our national fundraiser, Pennies for PH, by putting a jar and our poster in her delightful Gary’s Crafts and Gifts shop in Coldwater Ontario. Gary is her husband, and together they make many of the beautiful items in the store. If you are on your way to cottage or ski country, be sure to visit this lovely community and to say “hi” to Carolyn and Gary.
 


Low-sodium recipe of the month:
Back to School Breakfast Apple-Banana Oatmeal

Here is a great quick (and diabetic friendly) recipe to get you and your kids going in the morning. A delicious back to school breakfast!

Apple-Banana Oatmeal
Source: TasteofHome.com
  • Prep/Total Time: 15 min.
  • Yield: 2 Servings
Ingredients
  • 1 cup water
  • 1 tablespoon orange juice concentrate
  • 1/2 cup chopped unpeeled tart apple
  • 1/4 cup sliced firm banana
  • 1/4 cup raisins
  • 1/4 teaspoon salt, optional
  • 1/8 teaspoon ground cinnamon
  • 2/3 cup quick-cooking oats
  • 1/4 to 1/3 cup oat bran
  • Brown sugar, optional
Directions
  • In a saucepan, combine water, orange juice concentrate, apple, banana, raisins, salt if desired and cinnamon; bring to a boil. Stir in oats and oat bran. Cook for 1-2 minutes, stirring occasionally. Sprinkle with brown sugar if desired. Yield: 2 servings.
Nutritional Analysis: One serving (prepared without salt and brown sugar) equals 235 calories, 4 mg sodium, 0 cholesterol, 52 gm carbohydrate, 7 gm protein, 3 gm fat, 7 gm fiber. Diabetic Exchanges: 2-1/2 starch, 1 fruit.

Originally published as Apple-Banana Oatmeal in Quick Cooking January/February 2000, p12



Latest PH news





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PHA Canada is currently working on a project for Awareness month and we need your help. We are looking for 1-2 patient volunteers in each PH functional class to share their experiences with the six minute walk test. More specifically, we need you to tell us what you experience as you are walking so we can show the difference between someone in class I - II - III and IV as they do the test. More details on what we are up to as far as our awareness month campaign will be shared soon - we are ve..... [more]

For more PH news visit the newsfeed on our website: www.phacanada.ca/news or subscribe to the PH News RSS feed
The Pulse
Vol. 2 No. 9 Sept 2012
Connect with PHA Canada:


VIEW PAST ISSUES: www.phacanada.ca/ThePulse

PHA CANADA NEWS & UPDATES:
AGM Reminder
Share your story
PH Resources: your help needed
Community Events Calendar


AGM REMINDER
 
A reminder that the Annual General Meeting of the Pulmonary Hypertension Society of Canada will be held in the Collingwood Room at the Sheraton Airport Hotel, 801 Dixon Road, Toronto, Ontario on Saturday, September 8th in conjunction with the Toronto Chapter monthly support group meeting. The meeting will commence at 12:30 PM and lunch will be served.  RSVP's were required and all those attending must be members in good standing.
If you will be attending, please RSVP, before Friday, September 7, 2012 to PHA Canada's Administrative Assistant, Shirley at swong@phacanada.ca

SHARE YOUR STORY
We are looking for articles to include in our Fall issue of Connections as well as in The Pulse monthly e-newsletter. Do you have a story, a recipe, tips on living with PH or something else you would like to share? Send it to us at connections@phacanada.ca

PH RESOURCES:
YOUR HELP NEEDED
We are compiling a list of resources available to patients across the country, if you’ve taken advantage of any resources available in your province, or city (through government programs, other foundations etc.) please share the information with us so we can help others in your region. Email your resource info to: livingPH@phacanada.ca


UPCOMING COMMUNITY EVENTS

(click the event to go to information for each event)
Sep 10
W21C Research and Innovation Centre
7:00 PM - 9:00 PM
We are hoping to begin a Yoga wellness program for patients living with PAH in October 2012. The first step of the program involves a randomized clini.....more

Nov 10
The Pulmonary Hypertension Association of Canada – Toronto Chapter is excited to present our 4th annual fundraising event: “Let Me ..... more
 
Hosting a PH-related event that you’d like us to help you publicize? Submit your event for our events calendar and we will include it in upcoming issues of The Pulse (and Connections, depending on timing)







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