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



PHA Canada’s monthly electronic newsletter
Vol 1. No. 2 August 2011
 

In this issue:


PHA Canada Awards over $16,000 in Conference Scholarships
In July, this year’s Scholarship Committee had a huge task before them: they were to review the 31 conference scholarship applications received, deliberate on who would receive funding to attend the Conference and how to split that funding so that as many applicants as possible could attend. We’re pleased to announce that the Committee did a fantastic job in finding a way to allocate some funding to all 31 applicants. In total $16,838 in scholarship funding has been awarded.

Congratulations to all scholarship award recipients, we look forward to seeing you at the Conference.

We would like to extend special thanks go to Dr. Doug Helmersen and the Calgary Clinic who donated $2570 towards scholarships for patients from the Southern Alberta region. Funds for these scholarships were made available through the Calgary Health Trust thanks to fundraisers for PH organized by patient Isabel Dade. A special thank you also goes to Dr. Ian Adatia at the Stollery Children’s Hospital in Edmonton who donated his hotel room to a scholarship recipient. Thank you as well to our Scholarship Committee members for your work in assuring that all applicants will be able to attend the conference and for reviewing all applications and making your decisions in a very timely manner.


2011 PH Conference Sessions Sneak Peak: PH and Yoga

This year’s conference will offer a brand new session: PH and Yoga. The session will be facilitated by yoga instructor Judith Mirus and PH patient Lynn-Marie Cox.  Here is some information and a ‘sneak peak’ at the session.
 
In 2010, Dr Maria Santana, of the University of Alberta Hospital’s Lung Transplant Clinic, initiated a pilot program to explore whether yoga could be a feasible and effective activity to address the quality of life challenges associated with treatment for PH.  She enlisted Judith Mirus, an experienced Edmonton-based Iyengar yoga teacher, to develop and lead a dedicated special needs program for PH patients. 
 
Yoga has been adopted in recent years as a promising method for working with a variety of conditions like joint injuries, high blood pressure, asthma, and the effects of cancer treatments.  Less was known about pulmonary hypertension in the yoga context, so Mirus and senior colleague Marlene Mawhinney, director of the Yoga Centre Toronto, worked together to design the program in consultation with their teacher, Yogacharya BKS Iyengar of Pune, India. 
 
The result was first a pilot, with start-up funding from Pfizer Canada, which ran for 12 weeks in the Fall of 2010. Then it was extended to a second phase in the Spring of 2011.
 
In the conference presentation Mirus will outline the program and describe the encouraging outcomes from both phases, including participant responses. One of the program’s participants, Lynn-Marie Cox, will demonstrate key poses, describe their effects, and give her personal evaluation of the program. Cox stated: "being diagnosed with PAH in 1998 I have struggled to maintain a regime of exercise and fitness.  Yoga has improved my quality of life, improved my overall well being and has taught me to relax."
 
Judith Mirus has taught Iyengar Yoga for more than twenty years and holds an intermediate certificate from the Iyengar Yoga Association of Canada/Association de Iyengar Yoga Canada. She studies regularly in general advanced and medical classes at the Ramamani Memorial Yoga Institute, Pune, India.

Don’t forget to register for Conference today, online registration closes August 20th and spots are filling up quickly – there are close to 200 registrants already! Visit www.phacanada.ca/2011Conference to learn more and to register.


Actelion Celebrates Ten Years, Helps Patients in a Big Way
This year Actelion Pharmaceuticals is celebrating their tenth anniversary, and instead of expecting gifts, they’ve given a huge gift to PH patients and their families: a $10,000 donation to PHA Canada to help further educational and support resources for patients. We’d like to thank Actelion for their continued generosity and for continuing to support a better life for those living with PH. 
Happy 10th birthday Actelion, we look forward to many more.

PH Clinics Help PHA Canada Build a National PH Community
We’d like to extend our heartfelt thanks and gratitude to the staff at some of the PH clinics around the country: over the last six months or so, many of the clinics have participated in a program set up by PHA Canada to get the word our about our association. In partnership with PHA Canada these clinics have been helping to address hundreds of envelopes to mail out to their patients. The program is relatively simple: PHA Canada’s administrative staff puts together information packets which include information about PHA Canada, membership forms, conference information as well as information on any local groups (support groups, chapters etc) in the area. These packets are placed in envelopes, sealed up, the clinic’s return address is placed on them (to assure that wrong address returns don’t come to us – we do not want to violate the privacy of any patient) and postage is also added. Then boxes of these packets are mailed to the clinic, where the nurses have graciously volunteered their time to print out address labels and put the packages in the mail. It’s our cooperative effort to get the word out about PHA Canada and local support and help to build the PH community.
We’d like to thank the staff of the following clinics for offering their time to this project: Montreal PH Clinic, Toronto PH Clinic, Toronto Sick Children’s Clinic, London PH Clinic, Hamilton PH Clinic, Halifax PH Clinic, Calgary PH Clinic, Saskatoon PH Clinic, Ottawa PH Clinic and Quebec City PH Clinic. Thank you so much for your efforts and for helping us to build a strong, united, national PH community.

This Month’s PH Resources Tip: Educate yourself and others about PH - there’s something for everyone
Did you know that PHA Canada has a wide range of materials available to help you learn about PH, and to help you educate others and raise awareness of PH? These materials are available to order for free through our online store and many of them can also be downloaded from the Education section of our website for immediate access.
We also have new toolkits to help you get involved in fighting back against PH – each kit is specific to a particular interest – interested in general awareness raising? Order our Awareness Kit. Interested in working with the Media – we have a media kit just for you. Interested in working to get a support group started in your area? Our Support Group leaders guide is just the thing for you. We’re currently also working on a comprehensive guide to fundraising for those who want to let theirs and other’s change make a world of change for PHers. It should be available within the next few months. We also have information for those new to the disease, a one-page sheet to help you explain PH to kids and many, many other resources.
Visit the free materials section of the store to order hard copies, or browse the downloads page to see what’s available.

Low-sodium recipe of the month
Beat the heat with Gazpacho
In most parts of the country the dog-days of summer are here. Here’s a no-cook recipe to help you and your family beat the heat (and what’s better than a meal that requires no stove, when it’s this hot?).
Gazpacho is a cold Spanish tomato-based raw vegetable soup, originating in the southern region of Andalusia. Gazpacho is widely consumed throughout Spain, neighboring Portugal and parts of Latin America. Gazpacho is mostly consumed during the summer months, due to its cold temperature and acidic bite. (source: Wikipedia).
This month’s recipe is a classic Gazpacho courtesy of WholeFoodsMarket.com:
 
Classic Gazpacho
Serves 4
There's nothing like a cup of icy cold gazpacho for a perfectly refreshing summer lunch on a blistering hot day. Flavorful tomatoes are key here--don't attempt this recipe with unripe tomatoes.
 
Ingredients
3 pounds ripe tomatoes, cored and roughly chopped
2 cloves garlic, chopped
1 large cucumber, peeled, seeded and roughly chopped, more for garnish
1 mild green chile pepper or jalapeño, seeded and roughly chopped
1 red bell pepper, cored, seeded and roughly chopped
1 small yellow onion, roughly chopped
3 tablespoons freshly squeezed orange juice
Salt to taste (or skip the salt for a no-sodium option)
 
Method
Put tomatoes, garlic, cucumbers, chiles, red bell peppers, and onions into a large bowl and toss to combine. Working in batches, puree vegetables in a blender or food processor until smooth, adding a little water if mixture seems too thick. Strain pureed vegetables through a medium sieve to remove peels and seeds, discarding any solids. Transfer smooth puree to a large bowl and whisk in juice and salt (or skip altogether for a no sodium alternative). Cover and chill well before serving. Garnish with chopped cucumber if desired.
 
Nutrition
Per serving (About 17oz/490g-wt.): 100 calories (10 from fat), 1g total fat, 0g saturated fat, 4g protein, 22g total carbohydrate (6g dietary fiber, 14g sugar), 0mg cholesterol, 320mg sodium (this depends on how much salt you add – the less you add the lower the sodium content)
 


 


Latest PH news

Swimming to her limit: Midland woman fights pulmonary hypertension in the water
MIDLAND - When 79-year-old Veronica Greason looks around the pool at the Midland Community Center, she knows she’s working 10 times harder than the “floaters” bobbing up and down for exercise.“I call them floaters, because they just kind of hang out and talk in one place and call it exercise,” Greason says as a puff of oxygen pumps through her nose...... [more]

Badman’s name lives on with softball tournament

In the three years since their daughter’s death, Scott and Gail Badman have made sure that no one will forget the name Koryn Badman any time soon. Koryn was just 15 years old when she passed away from Primary Pulmonary Hypertension, or PPH. Since then, the Badmans and friends of Koryn have been working h..... [more]
 
FAMILY and friends of a 24-year-old woman who died of a rare lung condition have raised £40,000 for a charity supporting other victims. TV researcher Lucy Clarke of Philip Avenue, Swanley, lost her two-year battle with pulmonary hypertension in April 2008. She left behind her parents, Calvin and Debbie, her sister Naomi, 21, and her brother ..... [more]

Researchers work to take the pressure off newborns' lungs

AUGUSTA, Ga. – Children born with heart defects that pummel their lungs with up to three times the normal blood volume quickly find their lungs in jeopardy as well.Georgia Health Sciences University researchers are working to take the pressure off by augmenting a natural recycling system that enables blood vessels to temporarily handle the extra workload until..... [more]
Carly Q. Romalino/Gloucester County Times Gloucester County Times Source: www.nj.com MONROE TWP. — The last six months for Randy Ramos can be summed up by a two-foot long strand of beads. The red spheres mark every blood transfusion the 10-year-old has received since he was diagnosed with pulmonary hypertension early this year. The black..... [more]
A Saskatoon woman has reason to celebrate. It was 19 years ago that Sherry Duncan Paterson underwent a double-lung heart transplant, making her a pioneer in the Canadian transplant world. Source: CTV Saskatoon A Saskatoon woman has reason to celebrate. It was 19 years ago that Sherry Duncan Paterson underwent a double-lung heart transplant, making her a pioneer in the Canadian transplant world..... [more]

By Wendy Leonard, Source: Deseret News SALT LAKE CITY — Early diagnosis might be the key for those inflicted with a rare but fatal lung disease as Utah researchers aim to help save the lives of many with proper treatment. The 200 or so patients being treated in Utah hospitals for pulmonary arterial hypertension — as well as the thousands yet to be..... [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. 2
           Aug 2011


Connect with PHA Canada:



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

MEMBERSHIP CONTEST ENDS THIS MONTH:
Make sure you get your entries in: Tell us why you belong to PHA Canada and win prizes!

We want you to tell us why being a member of PHA Canada is important to you. Tell us why you're a PHA Canada member, why is membership important and why others should become members. Post your responses on our facebook page (www.facebook.com/phacanada) or send to aknott@phacanada.ca. Be as creative as you want: send us a video, a poem, a short essay, a photo - anything you can think of. We'll be giving away some prizes for the five most creative entries. Top prize is free Conference registration for you and a guest!
Contest closes on August 31, be sure to get your entry in before that date!

NEW STORE ITEM
We’ve added a brand new item to our store. We now carry 3/4" stainless steel periwinkle enamel plated ribbon charms, which can be used for making awareness jewellery. Use them in earrings, bracelets and necklaces to help raise PH awareness. PH jewellery can be used to raise awareness and fundraise for the cause. Visit the PHA Canada store to learn more and purchase.


CONFERENCE 2011: Online registration closes August 20th!
Don’t forget to register for Conference today as spots are filling up quickly – there are over 100 registrants already! Visit www.phacanada.ca/2011Conference to learn more and to register.


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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