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



PHA Canada’s monthly electronic newsletter
Vol 1. No. 3 September 2011
 

In this issue:


Less than three weeks to go:
2011 National PH Conference update

 
As you may notice, this September issue of the Pulse will be a bit shorter, as our staff are busy putting the finishing touches on this year’s Conference. There are already almost 250 registrants and while pre-registration is now closed, if you are interested in attending you can still register on-site at the Conference starting from 4:00 pm on Friday, September 16th until 12:30 pm on Saturday, September 17.
 
If you still are not sure about whether to attend or not, perhaps taking a look at the Conference agenda will help you to decide. The full conference schedule as well as session and speaker information is now posted on the Conference website and can be accessed at www.phacanada.ca/2011Conference/Agenda.
 
If you are already registered visit the agenda page as well – it may help you to plan out which sessions you’d like to attend. Don’t forget all of this year’s sessions will either be audio or video recorded and all attendees will be sent copies of the audio recordings and conference video so you’ll be sure to not miss out on any of the learning from the weekend.
 
So how much work goes into assuring that your PH Conference weekend is a success? A lot! Our Conference Committee has been working away for months to: plan the schedule, invite and coordinate speakers, plan all the details such as rooming lists, meals, session rooms and others with the hotel, work with the AudioVisual team to make sure everything is set up correctly and functioning properly and on many other tasks. Our work will not be done until the Conference is finished, and we do it all to make sure your Conference experience is fun and full of hope: an educational and uplifting weekend.
 
We can’t wait, and we hope that you are as excited as we are. See you in a few weeks!

New this year at Conference: Wall of Hope

We are introducing many new features this year at Conference: we’ll have kids programming, a photographer, new sessions, audio and video recording of sessions and a few other features that those who attended in 2009 will notice as new additions. One of the new features that you will notice is the Wall of Hope.
 
The Wall of Hope is a little ‘sneak peek’ into our 2011 Awareness Month campaign. The Wall of Hope at Conference is a large banner, which will be located in Churchill Court, right outside of the PHA Canada office and store. The banner is a sort of “Conference guest book” but it is also more… Stop by the wall of hope: write a message of hope to those living with PH or those who have been newly diagnosed, or if you wish to educate others about PH, write down something about what it is like to live with PH that others may not know about. You can sign your name, or if you prefer you can remain anonymous. After Conference, we will go through and compile all of the messages on the banner – these messages along with a picture of the completed banner will be posted on our website and the most inspiring messages will be used in materials we create for our Awareness Month Campaign.
 
How is this a “sneak peak” for Awareness month? Well the campaign this year will expand on the idea of “a banner of hope”. Campaign participants will receive blue handprint cut-outs. Each one of the fingers of the hand represents a common symptom of PH, which together make up the acronym “Blues” (Blue hand: one of the symptoms of a lack of oxygen. Acronym “blues”: five common symptoms of PH). On each hand, campaign participants will sign their name and write either a message of hope, or if they are learning about PH for the first time, they will write down something they now know about PH. These hands will then be used to create banners throughout the provinces.
 
At the end of the month all of the handprints and banners will travel to Ottawa for an Awareness Month wrap-up event on Parliament Hill. Members of Parliament will be invited to learn more about PH and to witness the official handprint count announcement.
 
We are encouraging all members of the PH community to get involved: run a “Lend a Hand for PH” campaign at your office, at your school, at your local mall. We will have kits available for order near the end of September: each kit will have enough entry forms to collect 50 hand prints and will include template letters to request permission to run the campaign as well as information about PH to hand out. There may even be some goodies for campaign participants.
 
More information on the campaign will be included in the October issue of the Pulse and in the next issue of Connections. If you are interested in participating and in ordering a kit (or more) please contact us at beaware@phacanada.ca


PHA Canada’s Annual General Meeting will be held on September 18th: this is your chance to have a say in the shape of your PH association.
 
As many of you may already know (notices went out a few weeks ago), the Annual General Meeting (AGM) of PHA Canada will be held in conjunction with Conference. The meeting will be held on Sunday, September 18th right after breakfast, in the Churchill Ballroom.

We encourage all members to attend this meeting: this is your chance to vote-in our 2011/2012 Board of Directors as well as learn a bit more about how PHA Canada is doing as an organization. PHA Canada is your organization, it is your community: this is your chance to have a say on what we do and how we do it. If you have not received your AGM materials, you may get them online, all AGM materials are available at: www.phacanada.ca/2011AGM.

All members in attendance at the AGM will be entered for a chance to win free conference registration for a patient and companion for the 2013 National PH Conference. A few other prizes may also be awarded. This is your chance to have a say in the development of your PH community: we hope to see you there.
 

This month’s Resource tip: Living with PH

When we surveyed our members, back when the PHA Canada website that you visit now was only a concept in our heads, one of the items that we heard that the community wanted the most were resources on really living with PH: the practical day-to-day items that can only come from those who live with the disease, along with some tips from PH specialized medical professionals. Because of this the Living with PH section of the website was created.
 
This section is ever growing and ever being developed. Here you will find resources on everything from diet and PH to travel, to intimacy issues and beyond. While many of the items have been written by our PH nurse volunteers, we also accept tips and information from you those living with PH – because who knows all the tips and tricks on coping with the disease better than you?
 
So visit www.phacanada.ca/livingwithph today to learn something you may not yet know and if you have some solutions for living with PH you would like to share with other PHers send them to us at livingph@phacanada.ca.
 
In the spirit of tips on living with PH, here are some great innovative tips on cutting out the sodium, which we found at allrecipies.com:
 
Living with PH tip: How to cut back on salt
  1. Stock up on lemon pepper. This seasoning adds wonderful flavour, not sodium, to your vegetables, meats, and starches. Use it freely as a salt substitute.
  2. Skip artificial flavourings in chips. That is, say no to barbecue flavour, ranch style, or those sour-cream-and-onion potato chip varieties. Also say no to those fancy flavoured corn chips. Those extra flavourings are largely extra salt, and typically double the amount of sodium in a serving.
  3. Look out for non-salt sources of sodium. Here's what to watch out for on food labels: sodium, Na, monosodium glutamate or MSG, sodium citrate, baking soda, baking powder, and sodium bicarbonate. They're all forms of – you guessed it—sodium!
  4. Say no to sports drinks. Research does indicate that endurance athletes need higher levels of sodium and far more to drink than everyday folk. Drinks like Gatorade deliver on both--they are rich in salt, which not only provides needed sodium but also stokes continued thirst. For the rest of us, the extra salt provides no benefit at all. Even if you exercise regularly, unless you are testing your body's physical limits for extended periods, water should do fine to quench your thirst.
  5. Replace salt in the saltshaker with a salt-free mixture. This way you can still use the shaker, but hold off on the salt, says Jennifer Leslie, R.D., a clinical dietician at the Clarian Heart Failure Clinic in Indianapolis. Mix garlic powder, black pepper, onion powder, and oregano together. Grind the mix fine enough for it to come out the shaker's holes, or buy a Parmesan cheese shaker (an empty one!) from a kitchen supply store. Another fun mixture is garlic, onion and chilli powder, cumin, dried oregano, and a touch of red pepper flakes.

Low-sodium recipe of the month
Back to School: Granola-to-go Bars
With kids heading back to school this month, we thought we would share an easy and healthy snack recipe that is healthy, yummy, low in salt and great not just for kids. Here is a great granola bar recipe from Taste of Home.
 
Granola-To-Go Bars
This grab & go goodie makes a hearty snack for a long day out. Chewy and sweet, these fruity bars that will have you craving more!
36 Servings Prep: 30 min. Bake: 15 min. + cooling


Ingredients

  • 3-1/2 cups quick-cooking oats
  • 1 cup chopped almonds
  • 1 egg, lightly beaten
  • 2/3 cup butter, melted
  • 1/2 cup honey
  • 1 teaspoon vanilla extract
  • 1/2 cup sunflower kernels
  • 1/2 cup flaked coconut
  • 1/2 cup chopped dried apples
  • 1/2 cup dried cranberries
  • 1/2 cup packed brown sugar
  • 1/2 teaspoon ground cinnamon
Directions
Combine oats and almonds in a 15-in. x 10-in. x 1-in. baking pan coated with cooking spray. Bake at 350° for 15 minutes or until toasted, stirring occasionally.
In a large bowl, combine the egg, butter, honey and vanilla. Stir in the sunflower kernels, coconut, apples, cranberries, brown sugar and cinnamon. Stir in oat mixture.
Press into a 15-in. x 10-in. x 1-in. baking pan coated with cooking spray. Bake at 350° for 13-18 minutes or until set and edges are lightly browned. Cool on a wire rack. Cut into bars. Store in an airtight container. Yield: 3 dozen.

Nutrition Facts:1 bar equals 130 calories, 7 g fat (3 g saturated fat), 15 mg cholesterol, 40 mg sodium, 16 g carbohydrate, 2 g fiber, 2 g protein.


 


Latest PH news

Ottawa issues warning about leukemia drug: Sprycel may cause fatal side-effect
Health Canada is warning patients and health-care professionals about a potentially fatal side-effect related to the drug Sprycel taken by patients with certain forms of leukemia. Sprycel (dasatinib), used to treat adults with chronic myeloid leukemia or acute lymphoblastic leukemia, has been linked to pulmonary arterial hypertension, a condition in which blood pressure is increased in the pulmonary arteries that carry blood from the heart to the..... [more]
 
New study will explore impact of exercise on pulmonary hypertension
For sufferers of pulmonary arterial hypertension (PAH), maintaining healthy heart function isn't as simple as going for a jog every morning. Patients need to do all they can to slow damage to their heart, and exercise can potentially improve their quality of life. On the other hand, the demands of pumping blood into stiff, large arteries and narrowed small arteries means that many PAH patients bear an increased risk of overexertion, which mak..... [more]
 
Telehealth reaches complex lung patients in regional Queensland
The Bligh Government's investment in innovation is giving regional patients with chronic lung disease access to high-level specialist care closer to home. Health Minister Geoff Wilson said the expansion of telehealth services throughout the state meant patients such as Cairns local Sarah Mulligan could see her Brisbane-based specialist without having to travel. "This extra funding is delivering telehealth services at The Prince Charles Hospital (..... [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. 1 No. 3
           Sep 2011


Connect with PHA Canada:


View past issues of The Pulse at: www.phacanada.ca/ThePulse

PHA CANADA NEWS & UPDATES:
PH Resources: your help needed
Membership contest ends this month
New Store Item
2011 Conference Registration
Community Events Calendar
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


CONFERENCE 2011: On-site registration information and Conference schedule now online
Although Conference pre-registration is closed, we still have a few spots available for the conference. On-site registration will be available at the conference starting at 4:00 pm on Friday, September 16th and ending at 12:30pm on Saturday, September 17th.
Also, the full conference schedule including session and speaker information is now available online at
www.phacanada.ca/2011Conference/Agenda.


Upcoming community events:
(click the event to go to information for each event)

September 16 – 18 – 2011 National PH Conference, Toronto ON

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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