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



PHA Canada’s monthly electronic newsletter
Vol 2. No. 5 May 2012
 

In this issue:

Help Us Raise Awareness By Sharing your PH Dream!

PHA Canada is currently working on an awareness project and we need your help! We are putting together a short video that raises awareness of PH by showing the dreams that those affected by PH (patients, families, friends and even medical professionals) have with regards to this disease. Whether you are a PH patient, caregiver, family member, friend or medical professional working in the field of PH, we ask you to submit a photo telling us your PH dream.
Your photo should be high resolution (200 dpi or more) and should include a message on a white board that completes the sentence "I dream of a day when...". This sentence should state what your dream with regards to PH is - for example I dream of a day when... "I can chase after my kids" or "I don't need oxygen". Be as creative as you like with your dreams.  We will be compiling all of the photos received in to a short awareness video set to the "Let Me Breathe" song and including facts about PH and what it means to live with this rare disease.  The deadline for photo submissions is Monday, May 28th.  Photos can be sent via email to beaware@phacanada.ca
 

Pennies for PH Challenge: Who will collect the most?

Many Canadians have already gotten on board with the "Pennies for PH" campaign since our last issue of the Pulse was sent out! Support groups are coming together to think of creative ways that they can encourage people to donate their spare change to support the work of PHA Canada! 

With this issue of the Pulse we are issuing Pennies for PH Challenge to encourage a little healthy, friendly competition. The Toronto Chapter has already raised $90 in pennies and is continuing to go strong - let's see which province can win this challenge. The winning person or group will end up with some fun PHA Canada goodies. Contest runs until the penny is no longer with us.

8.5x11 posters and 4x6 stickers (to stick to your penny jars) are now available - see the image on the right hand side - for those wishing to take part in this fundraising opportunity. Posters and stickers can be ordered by contacting our office. 

In order to motivate you to get your penny collecting started we would like to share a poem, which PH parent, Katherine Huisman from Manitoba  wrote in honor of her son. Thank you Katherine for sharing this very inspirational piece of writing with our readers! Katherine has given permission for anyone collecting pennies to use the poem to help spread the word...

Pennies for PAH
by Katherine Huisman

 
My middle son is very ill
Each day he takes many a pill
This disease of his makes me pout
An illness not many know about
Although he’s young and quite durable
For now the affliction is not curable
Right now his heart and lungs are lasting
Research and knowledge are amassing
We know there’ll be a cure one day
For now we just trust and pray
Till then I’ll FaceBook, text, and mention
To raise awareness of Pulmonary Hypertension
Please join me, one, two and many
And donate the soon useless penny
So others will know we need a cure
For the 2000 Canadians who daily endure
With no breath, fatigue, blue lips, and fainting
This is not a life worth painting

If you are interested in getting involved in the "Pennies for PH" Campaign and would like to order material please contact us at: can receive materials by contacting us at fundraising@phacanada.ca
Scholarships Awarded for PHA Orlando Conference

PHA Canada is pleased to announce that we have awarded a total of $12,700 in scholarships to 7 applicants in order to make it possible for them and their families to attend the upcoming 10th International PH Conference and Scientific Sessions, hosted by PHA USA, which will be held in Orlando, Florida from June 22-24th. A total of 13 people will be attending this conference thanks to PHA Canada scholarships.
The International PH Conference is a wonderful opportunity to meet other PH patients and their families from around the world and to learn first hand about ongoing research, treatments and many other topics in the field of PH. Special programming is available for children and teens and there are sessions that are tailored to patients, caregivers, family members and medical professionals. Time still remains to register for this truly incredible event. We strongly encourage all to attend this wonderful conference.
For more information, to view the conference schedule or to register, visit www.phassociation.org/conference.

There is Still Time to Register for PH Kids Golf Classic

The PH Kids Golf Classic is fast approaching but space still remains for those wishing to take part. The event is being held at the Mill Run Golf Course in Uxbridge, Ontario on Saturday, May 12th. Funds raised through the PH Kids Golf Classic will go to support the work of PHA Canada through projects to support children with PH and their families through educational opportunities. A portion of the funds raised will go towards funding scholarships allowing families of children affected by PH to attend the 2012 International PH Conference in Orlando, Florida. The PH Kids Golf Classic is committed to assisting as many PH Kids as possible to attend this life-changing event.

This wonderful event is being organized by PH Parents Bonnie and Keith Blenkinsop and their committee. The day will consist of 18 holes of golf, prizes, lunch and a grand buffet dinner. All participants will have their names entered in to a draw for a flat screen TV and additional ballots will be earned for pledges collected.  There are many ways to get involved by golfing, sponsoring a portion of the event, attending the dinner and more.  For more information or to register or sponsor this event, please visit the PH Kids Golf Classic page.

This Month's Resource tip:
Introducing the PHA Canada Listening Room

We are extremely proud and excited to announce the launch of a new section on the PHA Canada website. The PHA Canada listening room, is where you will find our audio library.

The library currently features audio lectures recorded at the 2011 National PH Conference. As we continue to host more events this audio library will grow with PH specific lectures. The room is divided into medically-led and peer-led sessions, which cover a variety of topics.

If you did not have a chance to attend the 2011 conference or missed a session that you would have liked to attend, or even if you would just like a refresher of the information at a session you attended you'll want to go check out the listening room. Visit the listening room by going to www.phacanada.ca/listeningroom. You can also get to the listening room by going to the "Education" tab on the top navigation bar on our website.



Low-sodium recipe of the month:
Lemongrass-Lime Leaf Soda

Although it doesn't feel like it in certain parts of the country, spring is in full swing and as the weather gets nicer and warmer, we wanted to bring you a "spring-y" recipe that will keep you refreshed this spring and into the summer. We are told to stay away from sodas due to their unhealthy nature, but here is a great, easy make-at-home soda recipe that is refreshing and significantly better for you than the store bought alternatives.

Lemongrass-Lime Leaf Soda
Source: Bonapetit.com
 
Chicago chef Graham Elliot uses aromatic kaffir lime leaves to make this sparkler from his sandwich shop, Grahamwich. They're sold frozen, and sometimes fresh, at Asian markets. If unavailable, substitute an additional ½ tsp. lime zest for each lime leaf. Lemongrass can be found in the produce section of better supermarkets and at Asian markets. 
 
Makes 12
Ingredients

  • 1/4 cup lemon zest (from 6 lemons)
  • 1/4 cup lime zest (from 8 limes)
  • 20 kaffir lime leaves
  • 2 stalks lemongrass, roughly chopped
  • 3/4 cup Simple Syrup(recipe below)
  • 6 cups soda water**, divided
Preparation
  • Combine citrus zest, lime leaves, lemongrass, and 2 cups water in a small saucepan. Bring to a boil, reduce heat, and simmer for 5 minutes. Strain lemongrass mixture into a jar and chill. Fill a 12-oz. glass with ice cubes. Add 2 Tbsp. lemongrass mixture and 1 Tbsp. simple syrup. Top with soda water (about 1/2 cup) and stir to combine. Repeat to make 11 more sodas.
** Editor’s note: Club soda contains some sodium. People watching their sodium intake make prefer seltzer water, which has the same fizz as club soda but without the sodium content

Nutritional Information
One serving (this recipe makes 12) contains: Calories (kcal) 39.7%, Calories from Fat 0.0, Fat (g) 0.0, Saturated Fat (g) 0.0, Cholesterol (mg) 0, Carbohydrates (g) 10.3, Dietary Fiber (g) 0.1, Total, Sugars (g) 8.4, Net Carbs (g) 10.2, Protein (g) 0.1, Sodium (mg) 0.5



Late
st PH news


 source: Marketwatch.com PRAGUE, Czech Republic, Apr 19, 2012 (GlobeNewswire via COMTEX) -- An initial report from the EPITOME-1 (Epoprostenol for Injection in Pulmonary Arterial Hypertension) study of a new formulation of the drug therapy epoprostenol, marketed as Flolan(R) will be revealed today at the International Society for Heart and Lung Transplantation (ISHLT) 32nd Annual Meeting and Scientific Sessions in Prague, Czech Republic. The find..... [more]
Source: Newsweasel.com   On a snowy February morning, Helen Britt swings open the festively painted door of her suburban bungalow home calling on her guest to park closer and step carefully. Her gentle smile and cheery blue green eyes at first mask the clear plastic tubing lining her nose and upper lip. Under a soft light gently lining the furrows of her aged skin, Helen tells of the day those long omnipresent tubes became a permanent part of her life ..... [more]
Source: CBSnews.com By Seth Doane (CBS News) About 113,000 Americans are waiting for new organs, but many will not live long enough to get them. To raise awareness of the need for organ donors, one young patient is raising her voice, sharing her remarkable story of survival. Charity Tillemann-Dick was once told singing the music she loved could kill her. To an opera singer, there's little that's more precious than a good set of lungs. Her wait for a transplant was excruciating. ..... [more]
Source: Salmon Arm Observer Rick Hansen 25th Anniversary Relay participant Hannah Baskill transfers the relay medal to teacher Nora Kennett. Lynda Hooper Hannah Baskill’s smile was as bright as her daffodil-coloured team jacket, as she arrived to the point of medal transfer at King’s Christian School. Teacher and special-needs champion Nora Kennett was the medal bearer in waiting for the third leg in the relay. After Hannah transferred the relay medal ..... [more]
First Human Data for NITROSYL Examines Response to Inhaled Nitric Oxide in Cardiac Transplant Patients source: Biotechnology News Today PR Newswire   COCOA, Fla., April 11, 2012 /PRNewswire/ -- GeNO LLC (www.genollc.com), a privately held, advanced development-stage technology company, today announced that data on the NITROSYL Delivery System during Right Heart Catheterization (RHC) in subjects being evaluated for Orthotopic Heart Transplantation (OHT) and Left Ventricu..... [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. 5 May 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
SHARE YOUR STORY
We are looking for articles to include in our upcoming Spring issue of Connections as well as in The Pulse monthly e-newsletter, the Pulse. 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)
 
May 05
Condo Party Room 1:30 PM - 4:00 PM
 
May 12
Mill Run Golf Course 12:00 - 9:00 PM

Jun 02
Condo Party Room 1:30 PM - 4:00 PM
 
Jun 03
Emily Murphy Park 12:00 PM - 3:00 PM

Jun 22 -24
Orlando, Florida All Day

Jul 07
Main Street Catholic Church 5:00 PM - 8:00 PM

Jul 16
Calgary, Alberta All Day

 
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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