PHA Canada’s monthly electronic newsletter
Vol 2. No. 9 September 2012
In this issue:
AWARENESS MONTH 2012:
We need your help!
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 firstname.lastname@example.org.
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
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 email@example.com
This Month's Resource tip:
HOW CAN I GET INVOLVED IN MY COMMUNITY?
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
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: firstname.lastname@example.org
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:
Shoppers Drug Mart Specialty Health Services
A new member has joined as of September 1, 2012:
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!
Prep/Total Time: 15 min.
Yield: 2 Servings
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
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.
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.
Originally published as Apple-Banana Oatmeal in Quick Cooking January/February 2000, p12
Latest PH news
For more PH news visit the newsfeed on our website: www.phacanada.ca/news or subscribe to the PH News RSS feed
Attention patients living in Ontario taking Tracleer: Actelion Pharmaceuticals has informed us there is a technical error in the ODB drug approval system. When patients fill a prescription of Tracleer or any generic of Tracleer in Ontario only, pharmacists try to get approval for coverage through the system, they are being rejected because those drugs gave been accidentally deleted from the approval list.The ODB has acknowledged this error and is working to fix it. They will continue to pr..... [more
Source: Bradford Times By Miriam King, QMI Agency Ruth Dolan wears a zebra-striped pin. She explains, "When you hear hoofbeats, you think horses. Maybe you should think zebras." In other words, when confronted with symptoms that include extreme fatigue, fainting and shortness of breath, most physicians think "heart disease" or COPD. But maybe - in some cases, at any rate - they should be thinking "Pulmonary Hypertension." "That's our campaign - to try to get doctors to think "zebras..... [more
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
Vol. 2 No. 9 Sept 2012
Connect with PHA Canada:
VIEW PAST ISSUES: www.phacanada.ca/ThePulse
PHA CANADA NEWS & UPDATES:
Share your story
PH Resources: your help needed
Community Events Calendar
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 email@example.com
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 firstname.lastname@example.org
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)
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)
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
Brebeuf College School
The Pulmonary Hypertension Association of Canada – Toronto Chapter is excited to present our 4th annual fundraising event: “Let Me ..... more