PHA Canada’s monthly electronic newsletter
Vol 2. No. 6 June 2012
In this issue:
GET INSPIRED: MCKYNLEA'S PENNIES FOR PH CAMPAIGN
Dear Pulse Readers,
A few weeks before my mom’s birthday in 2008 her doctors told her she was very sick with Pulmonary Hypertension. That year when she blew out her candles her wish was for a cure for PH. Since then whenever anyone in our family blows out birthday candles, or wishes on a turkey dinner wishbone we all wish for the same thing: A cure for Pulmonary Hypertension.
My mom says she has everything, but would really like not to have a pump and a tube in her chest. That is the gift I want to give her one day. When the Pulmonary Hypertension Association of Canada said they were going to collect Pennies for PH I wanted to help. So, for this Mother’s Day (2012) I went door to door on my street to collect pennies. I even got a whole jar that had $20 of pennies in it!!!!!!!!!!!!!
I thought it was pretty easy going to my neighbours so I thought I would go to more houses and in 1 hour I was able to get more pennies. I collected $71.30 in total! I am challenging myself to go on one street every weekend from now until the end of the summer.
I was hoping that maybe you could do one street every week too and then maybe we can get our wish.
If you are interested in getting involved in the "Pennies for PH" Campaign, 8.5x11 posters and 4x6 stickers (to stick to your penny jars) are available - see the image on the right hand side. If you would like to order materials please contact us at: email@example.com
Opportunities for Awareness Abound!
When our family was launched on this PH Journey with our daughter almost 5 years ago now, we were flung into a very scary and uncertain world. I know each of you reading this know all about that journey that you or your loved ones travel in living with PH. Reflecting back on these years, I am now able to smile about how we have coped (with enormous amounts of support), with what we have learned, and also how much more hopeful we feel, thanks to being part of the generous support we share at the Toronto Chapter PH Group.
I have experienced a sort of evolution or growth in the intervening years, and a new confidence in my need to want to help spread awareness about PH so other families do not have to endure what so many of you have, prior to diagnosis especially.
With the help of a number of members in our group, I have been presented with opportunities to speak formally and informally to groups and individuals about PH.
The most recent opportunity came because of Jeannie Tom, a PHA Toronto Support Group Member, who never misses an opportunity to network and share her story with whoever will listen. She has done much for the cause of PH awareness!
Jeannie had connected with Lana Biro at the Lung Association, and after many e-mails and phone calls I was able to do a presentation, on May 16, 2012, to their Certified Respirology Educators, who are also Registered Respiratory Therapists. These men and women take calls from all over Ontario about lung conditions and were beginning to get requests about pulmonary hypertension. They were the most eager and attentive audience, asking questions even before I began my presentation. It was a delight to speak with them and educate them about PH!
Members of our group have had a number of opportunities to speak to Pharmaceutical company sales staff and to a seniors group, as well as to individuals to help educate and to spread awareness about PH and PHA Canada.
The first time Loretta Chu and I presented to Eli Lilly staff in their corporate “theatre”, it felt a little intense, but in very short order we were relaxed by their warm reception and eagerness to learn, from a patient’s perspective, about this lung disease.
If you want to reach out in this way but feel a little intimidated, buddy-up with a ”PHriend” who is a little more comfortable speaking in public to build your own confidence. We need all the voices and all the opportunities we can find to help spread the word about pulmonary hypertension.
1st PH Kids Golf Classic a HUGE success
It was a perfect day for golfing on Saturday, May 12th
as 44 eager golfers took to the course in support of PHA Canada. The Mill Run Golf Course in Uxbridge, Ontario was host to the 1st
Annual PH Kids Golf Classic which was a product of the hard work of Keith and Bonnie Blenkinsop and their dedicated group of volunteers which included daughters Sydney, Jordan, Madison and their friends Carly Prescott and Taylor Stretten.
The day began for golfers with a light lunch followed by a tee time start on the course. It finished with a grand buffet dinner with close to 90 in attendance. Ruth Dolan spoke on behalf of PHA Canada and Maddie Blenkinsop shared her personal PH journey with the crowd
The event was a very big success raising over $4000 for PHA Canada as well as raising awareness of this rare and life-threatening illness. PHA Canada would like to thank the Blenkinsops and their family and friends for the tremendous job they have done in organizing this event and all of the hard work and effort they put in to making it such a great success!
Save the date: Conference 2013!
PHA Canada is pleased to announce that the 2013 National PH Conference will be held in Ottawa, Ontario from September 20 - 22, 2013.
We invite you to SAVE THE DATE
and join us for what is sure to be our biggest and best conference ever!
Our staff is already working behind the scenes to secure the conference venue and more details will be released as they are confirmed.
If you have never had the opportunity to attend conference, make 2013 the year that you take part in this educational and informative weekend that offers you a chance to learn about the latest research in the field of PH, to meet other families who are also living with the disease and to take part in a variety of educational sessions and support group.
Name the Conference Contest
Last year’s conference theme of “Connecting the Community from Coast to Coast” emphasized our goal of continuing to bring together Canadians from across the country for the common goal of providing support and ending isolation.
We are now looking for a unique theme for our 2013 conference that speaks to the goals we are still working to achieve here in Canada. We are asking your help in coming up with our 2013 theme.
This contest is open to all PHA Canada members and will run until August 31, 2012. The entrant with the winning theme will receive a free conference registration for the 2013 conference! Submissions can be sent to firstname.lastname@example.org. We look forward to receiving your creative submissions.
"I DREAM": PHA Canada's awareness video
Last month we asked the community to submit their "PH dream" to help us put together a PH awareness video, and the community responded! We have received so many great photos and now the hard work begins. We are working behind the scenes to put the video together. We will be launching the video at the Orlando PH Conference. Look for a link to the video on our YouTube channel
in the next issue of The Pulse.
Here are a few "teaser" photos of our community members sharing their dreams: "I dream of a day when..."
A BIG THANK YOU
to all those who submitted their photos!
This Month's Resource tip: Caregiver resources
While a lot of focus in PH is on the patient, and much of the information out there is for patients or about the disease, we must not forget our caregivers and the crucial role they play in our lives, in our care and in our well-being. We love our caregivers!
Did you know that PHA Canada's website has resources for Caregivers? We are constantly growing this section and have recently included new material. The caregivers section of the website: www.phacanada.ca/caregivers
includes information on:
Whether you are a patient or a caregiver take a look at the caregivers section, maybe you'll learn something new, or it will help you remember how important it is not to forget the well-being of the caregiver.
If you have anything you would like to contribute to this section: more tips for caregivers on caring for themselves, tips for patients on helping to care for their caregivers or tips for caregivers on caring for patients we welcome your submissions. Send your contributions to: email@example.com
Low-sodium recipe of the month: Father's day grilling
Here is a "think outside the box" recipe for your father's day grill. Using lamb brings a unique twist to traditional grilling. Greek (or mediterranean style) cooking involves using items such as lemon juice and oregano for seasoning and therefore does not require a lot of salt. If you are not a fan of lamb, this "marinade" is also great on chicken, pork and shrimp.
Greek Lamb Kabobs
souce: Taste of Home
4 Servings Prep: 10 min. + marinating Grill: 15 min.
1/2 cup lemon juice
2 tablespoons dried oregano
4 teaspoons olive oil
6 garlic cloves, minced
1 pound boneless lean lamb, cut into 1-inch cubes
16 cherry tomatoes
1 large green pepper, cut into 1-inch pieces
1 large onion, cut into 1-inch wedges
Nutrition Facts: One serving (2 kabobs) equals 226 calories, 9 g fat (3 g saturated fat), 74 mg cholesterol, 83 mg sodium, 13 g carbohydrate, 2 g fiber, 25 g protein. Diabetic Exchanges: 3 lean meat, 2 vegetable.
In a small bowl, combine the lemon juice, oregano, oil and garlic.
Set aside 1/4 cup for basting; cover and refrigerate. Pour the
remaining marinade into a large resealable plastic bag; add the
lamb. Seal bag and turn to coat; refrigerate for 8 hours or
overnight, turning occasionally.
Drain and discard marinade. On eight metal or soaked wooden skewers,
alternately thread lamb, tomatoes, green pepper and onion. Using
long-handled tongs, moisten a paper towel with cooking oil and
lightly coat the grill rack.
Grill kabobs, uncovered, over medium heat or broil 4 in. from the
heat for 6 minutes; turning and basting occasionally with reserved
marinade. Grill or broil 8-10 minutes longer or until meat reaches
desired doneness (for medium-rare, a meat thermometer should read
145°; medium, 160°; well-done, 170°), turning and basting frequently. Yield: 4 servings.
Latest PH news
Source: BMJOpen BMJ Open 2012;2:e000806 doi:10.1136/bmjopen-2011-000806 Objectives To investigate the patient's experience of the trajectory to receiving a diagnosis of pulmonary arterial hypertension (PAH) and inform the provision of care for this patient group. Design Qualitative study using in-depth one-to-one interviews and pictorial representations. Data w..... [more
Source: Biocompare.com Source : American Thoracic Society ATS 2012, SAN FRANCISCO – Inhibition of pre-B Cell Colony-Enhancing Factor (PBEF) could be a potential therapeutic target for pulmonary hypertension (PH), according to a preclinical study in an animal model of PH. "PBEF expression appears to be significantly increased in PH. Accordingly, we examined whether inhibitin..... [more
For more PH news visit the newsfeed on our website: www.phacanada.ca/news or subscribe to the PH News RSS feed
Vol. 2 No. 6 Jun 2012
Connect with PHA Canada:
VIEW PAST ISSUES: www.phacanada.ca/ThePulse
PHA CANADA NEWS & UPDATES:
Orlando PH Conference Meet & Greet
Call for Board Nominations
Share your story
PH Resources: your help needed
Community Events Calendar
ORLANDO PH CONFERENCE: CANADIAN MEET & GREET
Calling all Conference Attendees!
Are you planning on attending the upcoming PHA “Power of One” International Conference in Orlando in June?
PHA Canada would like to invite you to join us for a special Regional International Meet & Greet:
Friday, June 22nd
11:30 AM – 12:30 PM
Renaissance Orlando Hotel
This session is open to Canadian patients, family members and medical professionals who will be in attendance. Light refreshments will be served.
Come out and mingle with fellow Canadians and learn what has been happening on the PH front in Canada.
CALL FOR NOMINATIONS: PHA CANADA BOARD OF DIRECTORS
We are seeking nominations for the Board of Directors of PHA Canada. There are many ways that you can contribute to PHA Canada and we seek a wide variety of candidates who bring varied skills to the Board. This includes patients, caregivers, medical professionals or those with particular professional skills that would be useful to the workings of our Board (ie. Accounting, Marketing, Fundraising, etc.)
If you or someone you know has the desire to become more actively involved with the PH community in Canada, we strongly urge you to consider putting your name forth for candidacy in our upcoming Board election which will take place at our Annual General Meeting on Saturday, September 8th
in Toronto, Ontario in conjunction with the Toronto Chapter monthly support group meeting.
Watch for our full nomination package which will be coming out in early June via mail to our members and also available online, or you may contact us at firstname.lastname@example.org
or 1-877-7-PHA-CAN for additional information or with any inquiries.
We strongly urge you to consider becoming involved by considering nomination!
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 email@example.com
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)
London Public Library - Westmount Branch (Meeting Room C)
1:30 AM - 3:30 PM
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)
Main Street Catholic Church
5:00 PM - 8:00 PM