PHA Canada’s Monthly Electronic Newsletter
Vol 2. No. 12 December 2012
MAKING CONNECTIONS - KEEPING THE PHLAME OF HOPE ALIVE
In 2008, PHA Canada began creating its online presence and within the last four years, we’ve developed a vibrant website that includes blogs, RSS feeds for the latest news relating to PH, fundraising tools, discussion boards and links to events happening across our nation. We have engaged with a greater number of our members via social media with our Facebook page and our Twitter account (@phacanada). In 2010, we launched our YouTube channel and we recently opened an Instagram account to share photos with members. We also have recently created a page on LinkedIn. We also release our monthly e-newsletter, the Pulse using MailChimp and we are so very excited to share with you the latest issue of Connections.
In 2012, we can say that we are connecting with our members in many relevant ways. We want to continue to connect and develop our community in the digital world and face-to-face. We want to continue to build our community and respond to its growing need for information and social connections.
In 2013, we will be hosting our third National Biannual Conference in Ottawa, Ontario. Our theme is “Keeping the PHlame Alive”. Help us keep the PHlame alive by getting connected and sharing our connections with your family and friends. We hope to see you in Ottawa on September 20th
Information about registration, scholarships and many other details will be available in early 2013, and will be posted on the conference website at www.phacanada.ca/2013Conference
Be sure to “follow”, “like” and/or “subscribe” to us at the following social media outlets.
We want to connect with and get to know you:
The Pulse: Please subscribe at www.phacanada.ca/thepulse
us on Facebook – www.facebook.com/phacanada
BREATHERS UNITED NEEDS YOU
Pulmonary Hypertension Association of Canada is proud to be a part of the Ontario Lung Health Alliance, a group of organizations and individuals that has united to provide collaborative leadership and a unified voice on policy and programming to address lung disease in Ontario.
Breathers United is a movement created by the Ontario Lung Health Alliance to give Ontarians a voice to help make lung health a priority in the province.
Everyone in Ontario who breathes is being encouraged to visit the advocacy website www.breathersunited.com. The website provides startling facts – including that Ontario has no strategy to address lung disease – and information about how to people can “love their lungs”.
The goal of the campaign is to increase the profile of lung health in the province and to encourage Ontario to make lung health a priority. Specifically, the Ontario Lung Health Alliance believes that the province needs an Action Plan for lung health, and has created Breathers United as a way to allow voters to communicate this to their elected officials.
Visitors are encouraged to take action to protect their lungs by: joining the Breatherhood, sending an email to their MPP (with one click), sharing the campaign with friends and colleagues (again with a few easy clicks), and sharing their photos and lung stories on Breathers United community pages.
If you are a fan of inhaling and exhaling living in Ontario, then the Breatherhood needs you! Take action by visiting www.breathersunited.com today.
Regardless of where you live in Canada, join the community of Breathers on Facebook at www.facebook.com/breathersunited. Look for photos of PHA Canada supporters– including Sir Paul McCartney (aka Mark Harrison) at the Toronto Chapter's Let Me Breath Vegas Night Fundraiser.
Thank you for your support of this important advocacy effort. Long live breathing!
PULMONARY HYPERTENSION AWARENESS MONTH
Last month was Pulmonary Hypertension Awareness Month and we are very pleased to report that a record number of fundraising and awareness events were held across Canada. While final numbers from events and activities held throughout the month are still coming in, we can officially announce that with Actelion's $10,000 in matching funds, we will tip the incredible $50,000 raised mark! We are so proud of the efforts of our volunteers and active PH members. This year, Canadians across the country participated in Pennies for PH drives, 6-Minute Walks for Breath and we had 28 cities in Ontario proclaim November as Pulmonary Hypertension Awareness Month.
We also launched our first video news release and we saw our social media engagement numbers rise during the month of November. For a full recap on Awareness Month, please watch your mailboxes for hard copies of our upcoming issue of Connections.
We would like to take a moment to thank members of our community for their tireless efforts to make PH a better known rare disease. Early diagnosis helps increase quality of life for PH patients and their families and your awareness efforts help to make a difference.
Michelle & Darwin Hanofski
6-Minute Walk for Breath
North West Leisure Centre
Ottawa Support Group Pennies for PH
November 9th and 13th
Ottawa Heart Institute
Let Me Breathe – Vegas Night Fundraiser
Brebeuf College, Toronto, Ontario
Edmonton PH Society
November 14th and 21st
University of Alberta Hospital
Jacqueline Brandwood Pennies for PH
November 15th to 30th
Ottawa Future Shop, Walmart and
many other Ottawa locations.
BC PH Society 6-Minute Walk for Breath
Terminal City Club
Vancouver, British Columbia
6-Minute Walk for Breath
BWG Leisure Centre
6-Minute Walk for Breath
Crystal Beach, Ontario
6-Minute Walk for Breath
Pulmonary Hypertension Proclamations
28 cities across Ontario
Toronto Chapter Pennies for PH
Members of the Toronto chapter
collected over $1,144.54 in pennies.
Special thanks to Ruth Dolan, for her continued efforts in contacting government officials at all levels within the province of Ontario to request that November be proclaimed Pulmonary Hypertension Month each year.
Special thanks to Theresa Unger, in just 2 short weeks Theresa was able to fundraise $470 from her co-workers, which her employer, Sinclair Supply, generously matched dollar-for-dollar raising the total to $940. Theresa was able to raise another $160 from friends and family for a grand total of $1100!
Special thanks to Jacqueline Brandwood. Jacqueline, whose cousin, Brenden has pulmonary hypertension, learned about PHA Canada’s Pennies for PH Campaign at the 6-Minute Walk in Ottawa. It was then that she decided to go on a personal “Pennies for PH” quest. Jacqueline purchased jars for the pennies and ordered 200 penny jar stickers and posters from PHA Canada. Jacqueline will share her fundraising tally with us in the New Year! Special thanks also go to Jamie Kretschmar, and other members of the Ottawa PH Support group who volunteered their time to help raise awareness and collect and count pennies. Look for the full story on the Ottawa Pennies for PH Challenge in the Winter issue of Connections on its way to all current PHA Canada members this week.
If you are looking for ways to get involved during Pulmonary Hypertension Awareness Month, and beyond, please contact us at: firstname.lastname@example.org.
RESOURCE TIP OF THE MONTH: HOW TO SURVIVE THE HOLIDAYS
The Holiday Season is upon us and while everyone is running around trying to get things done, those of you who suffer from PH will be feeling the effects of stress on your system more than anyone. So with Christmas and Hanukkah at hand, times when everyone is supposed to participate and feel cheerful, what are some strategies for coping? Here are a few tips to survive.
Main Point - A bit of advance warning to loved-ones can go a long way toward minimizing stress levels over unrealistic expectations. If you are hosting an event at your home, the key is advance planning. If you ask for help in advance, even with your own family, people don't feel put upon. They feel they're a part of the event. If possible, create a menu and delegate various dishes to guests. Have someone over the day before to set the table and get things ready. Have your cleanup crew ready for action after dinner.
Whatever you do, don't wait until the last minute to ask for help. You may not get the help you need. And if people do help, they might resent it. Become an expert at planning. Asking in advance allows people to help gracefully. While friends and family may not do it exactly like you would, everything that needs to be done will be done and you will still have energy to enjoy the day!
There's always the temptation to abandon healthful living routines around the holidays. Eating too much or not the right things, not getting enough exercise, staying up late, worrying about family members getting along -- all these things can make you feel worse. Create healthier menus (some sample menus can be seen by following this link
). Don't get stuck in the never-ending to-do list. Do a crossword puzzle or take a walk or a nap. Definitely nap during the holidays if you can: the mental and physical break will rejuvenate you.
Prioritize. Decide how much shopping, cooking, or partying you can do and stick to it. Ask for help if need be. If you do too much one day, you will suffer for days after and get nothing done. The key here is not letting presents and errands get out of control. Avoid last minute shopping and weekend crowds.
Let people know in advance that you will try your best to attend a party, and that if you are able to make it, you may have to bow out after an hour or two. Tell them you will only be able to let them know 24-48 hours in advance. If you predict that you're unpredictable, people will generally handle it better.
Remember: The amount of energy and quality of functioning can change dramatically from moment to moment, especially when you are stressed. Because it is impossible to know how you will be able to function on any given day, planning for holiday events is difficult. The holidays are extremely stressful for everyone, whether you have PH or are functioning as the caregiver. Conserving your already compromised supply of energy becomes vital, because exceeding your allotted energy can mean getting sick or a few days spent in bed or on the couch. Take care of you so you can enjoy the holiday’s
WHAT'S HAPPENING ACROSS CANADA?
The holiday season is upon us and members of our community are organizing holiday parties across Canada to participate in the spirit of sharing and joy.
For a listing of PH Community Holiday Events, please visit our News & Events calendar.
BCPHS AND PHA CANADA CO-HOST THE WESTERN REGIONAL PULMONARY HYPERTENSION SYMPOSIUM
In 2013, the BC Pulmonary Hypertension Society (BCPHS) will host the Western Regional Symposium for Pulmonary Hypertension from February 20th to 22nd at the Terminal City Club at 837 West Hastings Street in Vancouver. Members of the PH community living in Western Canada are invited to register for the event early in the New Year.
The event will include sessions about research developments in PH, health practices that benefit PH patients, discussion panel with health, nutrition and medical experts and a unique yoga session for attendees that may spark a love of this relaxing form of exercise. During the Symposium, BCPHS will also hold its AGM. The PHA Canada Board of Directors will also be meeting at the event.
Stay tuned for more information about this event coming out early in the New Year. If you have any questions about the event, please contact Angie Knott at AKnott@phacanada.ca.
INSIDE PHA CANADA
What is the time commitment required of PHA Canada's Board Members?
We are still considered a small organization and we are growing our governance capacity. What does this mean? It means that we are developing policies and guidelines that support our mandate to remain accountable and transparent in our actions as we serve the PH community.
This also means that PHA Canada has what we call a "transitioning board". There is currently a transition underway from a working board to a governance board. A working Board assists in the development of the association, and oversees everything from corporate governance policies to lower level project development as well as functioning as a strong advisory body. As the Board moves into its permanent governance role, PHA Canada will see changes in its management practices and an increased accountability on behalf of the Board in terms of corporate decisions, initiatives and information sharing.
Currently board members agree to 1-year terms and are required to participate on committees established by PHA Canada as well as in the organization of PHA Canada events. Board members are also required actively promote the organization within their regions.
To keep up-to-date with planning and to enhance the relevance of their role, Board members maintain a schedule of quarterly conference calls and meet in person twice a year.
Board members are nominated by members of the Canadian PH community and they are voted into office at the AGM.
If you have a question about some aspect of how PHA Canada works please send it to us at: email@example.com
Low-sodium recipe of the month: Thumbprint Cookies
The holidays are here and so to is the sweet tooth. Enjoy more than one of these delicious creations while trimming the tree this season. Enjoy!
Fill these oat and nut cookies with your favorite fruit juice sweetened jam. We think strawberry, raspberry and apricot jams are particularly good.
1 cup almonds or pecans
1 cup rolled oats
1 cup whole wheat pastry flour
1/2 cup safflower or canola oil
1/2 cup maple syrup or brown rice syrup
1/4 teaspoon salt
5 tablespoons fruit juice sweetened jam
Preheat oven to 350°F. Put almonds and oats into a food processor and pulse until coarsely ground. Transfer to a large bowl and add flour, oil, syrup and salt. Stir to combine well. Roll walnut-sized balls of the dough in the palm of your hand to form each cookie, then arrange on 2 large baking sheets, spacing cookies 2 inches apart. Press your thumb gently down into the center of each cookie to make an indentation. Spoon a scant teaspoon of jam into each indentation.
Bake cookies until golden brown and just firm around the edges, 15 to 20 minutes. Transfer to a rack to let cool completely, then serve immediately or store between layers of waxed paper in an airtight container.
Per Serving:Serving size: 2 cookies, 210 calories (110 from fat), 13g total fat, 1g saturated fat, 0mg cholesterol, 40mg sodium, 21g carbohydrate (3g dietary fiber, 9g sugar), 4g protein
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
Source: durhamregion.com Ajax resident raises awareness about pulmonary hypertension. AJAX -- Amanda English, pictured with two of her young children, Charlotte and Peter, was recently diagnosed with pulmonary hypertension which restricts breathing and can cause heart failure. Ms. English must now wear an oxygen mask at all times. November 15, 2012 Jason Liebregts / Metroland ..... [more
Source: WPXI PITTSBURGH — They are four friends with one big mission—to cycle across the country to raise awareness and money for a debilitating lung condition. They call themselves Team PHenomenal Hope, and they said they are inspired by the people living with pulmonary hypertension, or PH. “I was a healthy person, or at least I thought I was” said PH patient Patti Gordon. She was diagnosed after she had difficulty breathing. “When he first told me I h..... [more
SOURCE: Seaforth Huron Expositor By Susan Hundertmark, Seaforth Huron Expositor Tuesday, November 27, 2012 10:04:06 EST AM Just shy of nine months when he died, Tristan Roman Mero, of Seaforth, is the inspiration of a fundraising campaign by two of his aunts for pulmonary hypertension. “We’re doing this in his memory,” says his aunt Angelika Sturzenegger, of Gowanstown. Angelika and her sister Andrea have created a personal page on the Pulmona..... [more
Source: Hospital for Special Surgery (HSS) In patients with Systemic Sclerosis (SSc) – or scleroderma – a condition called pulmonary hypertension (PH) is a leading cause of death. Having PH means the blood pressure between the heart and lungs is elevated. The Need for New Tests for PH in SSc The current gold standard test for PH in scleroderma is called right heart catheterization (RHC). It is expensive and invasive. RHC also has significant associated risks. Other standard, no..... [more
Source: Yahoo TORONTO, Nov. 13, 2012 /CNW/ - Tomorrow, the Ontario Lung Health Alliance marks World COPD Day (November 14) by inviting every Ontarian who inhales and exhales to join Breathers United - www.breathersunited.com - a campaign to focus attention on lung health and galvanize support for government action to address the province's looming lung health crisis. Nothing is more important than breathing. Yet there has never been a mass movement to promote and protect the right to br..... [more
Vol. 2 No. 12 DEC 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 Winter 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)
University of Alberta Hospital
12:00 PM - 2:00 PM
EPAHS is hosting its Christmas Luncheon on Thursday, December 13, 2013. Please join us! Event will .....
7:00 PM - 9:00 PM
PLEASE NOTE THAT THIS MEETING HAS BEEN CANCELLED. SAB SUPPORT GROUP MEETINGS ARE NOW BEING HELD TH.....
Louise Riley Library
6:45 PM - 8:30 PM
The Pulmonary Hypertension Support Group of the Southern Alberta Chapter meets the first Tuesday of .....
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)
16 Woodglen Gate SW, Calgary
12:00 PM - 3:00 PM
Please note that the "Christmas Party", which was originally scheduled for December 15th, has now be.....