PHA Canada’s monthly electronic newsletter
Vol 2. No. 7/8 July/August 2012
*please note The Pulse will be on summer vacation in August, see you back in September
In this issue:
"I DREAM" Awareness Video Now Online!
We put out the call and our members have answered! Thanks to the fantastic submissions received from across the country, PHA Canada proudly debuted our “I Dream” awareness video at the 10th International PH Conference and Scientific Sessions, hosted by PHA USA in Orlando Florida on June 21, 2012.
The video is a unique compilation featuring the “dreams” of patients, family members, caregivers and medical professionals who graciously shared their dreams for the future as it pertains to PH. It shows how PH affects those living with it, and talks about the symptoms of the disease: we hope that this touching video will raise awareness and help to increase early diagnosis.
It is our hope that not only will you view this video but you will also share it far and wide, with friends and family so that we can raise awareness of PH and help to save the lives of others by having them diagnosed early. The video has been shared with our friends at Pulmonary Hypertension Associations all around the globe and we are hoping to make this awareness video a viral internet sensation, so please watch and share (links to the video on our youtube channel, also at www.youtube.com/phacanada)
A big thank you to all those who sent in their PH Dreams!
Thanks to the tremendous response from our community, we received more submissions than could make the final video.
Because we want to recognize all of the submissions we received we have created a photo gallery of all photos submitted. Click here to view the gallery
This was such an inspiring project that we have decided to keep the photo gallery open for new submissions. Take a look at the gallery and if you are inspired to do so, submit your "I dream of a day when..." photo to: firstname.lastname@example.org. We will keep the gallery open and growing as long as we keep receiving your photos.
PHA 10th INTERNATIONAL CONFERENCE A HUGE SUCCESS
Over 1500 attendees from 26 countries attended the recent PHA 10th
International Conference in Orlando, Florida. Among them were many Canadian attendees: some attending conference for the first time while others were seasoned conference veterans!
Over the four days spanning from June 21st
, a variety of events and meetings took place at the Renaissance Orlando Seaworld Hotel. The conference debuted with an International Summit during which leaders from around the globe shared presentations on the programs and tools they offer in their respective countries. Many wonderful ideas were shared throughout the course of the day and during the rest of the weekend with a variety of international meetings and mixers.
A Canadian “Meet & Greet” was held on Friday morning during which time, PHA Canada President Frank Poon shared some updates on what has been happening over the past year. A tribute to BCPHS former President Liz McCall followed with Jennifer Gendron and Acting BCPHS President Roberta Massender sharing their memories of this incredible PH leader. The meeting wrapped up with the presentation of PHA Canada’s new “I Dream” awareness video by National Manager, Angie Knott followed by a tribute to Paul Adams for the use of his amazing “Let Me Breathe” song during the video.
Conference opening on Friday afternoon featured a presentation entitled “The Power of One” that outlined how far PHA has come since the first “kitchen table” meeting over 20 years ago where the original founders shared their dreams of connecting other PH patients like themselves.
During the Friday evening dinner, fellow Canuck and PHA Canada volunteer extraordinaire, J. Paul Adams, presented the video for his song "Let Me Breathe". You can read more about Paul's efforts in the PHenomenal Volunteers article below.
Educational sessions were held throughout the day on Friday and Saturday which offered “something for everyone” from patients to caregivers to medical professionals.
At the Saturday evening dinner, PH patient Colleen Brunetti shared her story of being diagnosed as a young adult and finding a way to connect
with other “young PHers” through the “Generation Hope” network.
The conference closed on Sunday morning with an incredible presentation by young climber Matt Moniz who has proven that you are never too young to make a difference (read more about Matt’s story below
Despite the wet weather in Orlando thanks to Tropical Storm Debby, conference attendees young and old enjoyed a weekend of education, connection and inspiration! All are encouraged to attend the next PHA International conference in Indianapolis in 2014.
PHenomenal Volunteer: J. Paul Adams
Most of the time, Paul Adams, refers to himself as "Emily's uncle". When Emily was diagnosed with PH, his life changed. When Emily and her family found the Toronto Chapter of PHA Canada, Paul was invited to attend a support group meeting hosted by the Chapter and was so inspired by the courage of Emily and all those living with this disease that he decided he needed to find a way to help.
Paul is a musician and it was at this support group meeting that the idea for the song "Let me breathe" was born. The song was first debuted at PHA Canada's 2009 PH Conference in Montreal, and has grown with momentum since then. Last year a "we are the world" type music video for the song was recorded (view it here).
This year, Paul was awarded the Tom Lantos Innovation in Community Service Award from the PHA USA and thanks to this, Paul presented the "Let me Breathe" video at the Friday evening dinner at the 10th International PH Conference in Orlando this past June to 1500+ attendees. In addition, all 1500+ attendees received a CD with a copy of the song in their conference bags.
A website, www.letmebreatheph.com, to show the spread of the song across the world has also been created. Take a moment to visit the website and leave your pin on the map.
Paul's song is also the featured soundtrack on our "I dream" awareness video.
This level of raising global awareness of PH is pretty extraordinary in and of itself - but this is not all that Paul has done in the last few years. He has been involved with the Toronto Chapter ever since that first meeting. He, along with fundraising partner Rosemary Lavery, are the masterminds and organizers behind the Toronto Chapter's very successful "Let me Breathe" annual casino night fundraiser, which has been held as a November Awareness Month event for the past three years and which to date has raised over $30,000 for PHA Canada programs.
While PHA Canada had a chance to recognize and thank Paul at the Canadian meet and greet during the Orlando Conference, presenting him with a small thank you gift, we felt it was important to also recognize his tremendous awareness and fundraising efforts on a larger scale.
Thank you Paul for all that you have done and are continuing to do for the PH community; you are a true PH hero!
Ottawa 2013: Save the Date
Staff and volunteers continue to work on the plans for our 2013 National PH Conference which will be held in Ottawa, Ontario from September 20-22, 2013. Be sure to save the date and come and join us for this wonderful opportunity to network, learn and share with other PH patients, caregivers and medical professionals from across the country!
It’s Not too Late to Enter our “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 still looking for a unique theme for our 2013 conference that speaks to the goals we are continuing to work 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 remain open 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 email@example.com. We look forward to receiving your creative submissions.
Young Climber Raises PH Awareness!
At the recent PHA conference in Orlando, attendees were treated to the story of a remarkable young man who is making a difference and raising awareness of PH in honor of his friend.
Fourteen year-old, Matt Moniz, shared his story in front of a large crowd on Sunday morning as he spoke about his love for climbing mountains and how he turned this passion in to a way to raise awareness of PH to help his friend, 12 year-old, Iain Hess and other PH sufferers.
With help from his dad and other fellow climbers, Matt travelled to 50 states in just 43 days to climb the 50 highest peaks in the US. Matt likened his journey up the mountain to living with PH – with the thin air at the top of a peak causing him to be short of breath and giving him a better understanding of the struggles that Iain lives with every day.
Matt’s adventures not only raised awareness of PH, they earned him the title of National Geographic “Adventurer of the Year
” in 2010.
Matt has been featured in many articles and news broadcasts and takes the opportunity to raise awareness of PH at every turn. Here are a few places where Matt shares his amazing story and raises awareness of his friend's disease.
This Month's Resource tip: Get Blogging
We speak often of the importance of sharing your story. Did you know that PHA Canada's website has a platform to help you do this on a regular basis? PHenomenal Lives Blogs is a platform to help you get your own blog started.
Getting your own blog going is simple and easy: visit our website www.phacanada.ca/phenomenallivesblogs
and fill out the form to let us know about you and your blog. We will get a blog page set up for you and send you all the details of how to post to your blog. Blogs can be private (only viewable to people with an account and logged in to PHA Canada's website) or public (viewable to all). Our blog page also has some tips on getting started writing and on making your blog your own.
But why blog?
Here is an excerpt on the benefits of blogging about your illness from a blog called "The ICI Experience" [A Blog about all aspects of living with an invisible chronic illness (ICI)]
From: “Part III. Blogging About Your Illness: The Benefits
” by Sherril Johnson
Art has healing power. When I say art I mean all the arts: music, dance, sculpture, storytelling, journaling, painting, whatever we usually think of as the creative arena. Writing is art, therefore writing has healing power…
Mike Samuels, M.D. is one of the leading pioneers in exploring creativity as an important part of every person’s healing journey. He says:
"Physicians and nurses are discovering that art can have profound healing effects on their patients. Art brings to the human spirit a sense of freedom and joy. The spirit freed helps the body heal. Replacing fear with hope and darkness with light is the essence of modern body-mind-spirit medicine.”
Scientific studies tell us that art heals by changing a person's physiology and attitude. The body's physiology changes from one of stress to one of deep relaxation, from one of fear to one of creativity and inspiration. Art puts a person in a different brain wave pattern; art affects a person's autonomic nervous system, their hormonal balance and their brain neurotransmitters. Art affects every cell in the body instantly to create a healing physiology that changes the immune system and blood flow to all the organs. Art also immediately changes a person's perceptions of their world. It changes attitude, emotional state, and pain perception. It creates hope and positivity and it helps people cope with difficulties. It transforms a person's outlook and way of being in the world.
… Art, prayer, and healing all take us into our inner world, the world of imagery and emotion, of visions and feelings. This journey inward into what used to be called the spirit or soul and is now sometimes called the mind, is deeply healing. For healing comes to us from within; our own healing resources are freed to allow our immune system to operate optimally and that is always how we heal.
The artist is you. No training is needed. Just start blogging/writing. Your blog doesn't have to be public to help you heal.
Here are some important facts about art:
Participation in artistic activities can have measurable physiological results such as, reducing stress, improving the immune system, and easing pain.
Creating art gives a voice and language to unknown emotions, feelings and behaviors.
Tapping into our creative energy can help a person to feel more alive, to gain inner wisdom, and to stay more completely in the present moment.
When creating art, it uses the emotional and intuitive aspects of a person.
It has been said that from the era of the Internet a "new patient" would emerge, one who researched his or her ailments in the comfort of home, then challenged a doctor with the newly acquired knowledge. Arthur Frank says that sick blogs and patient pages are evidence that that moment has arrived, a sign that the new patient has gained an unprecedented sense of empowerment from her online community. Empowerment is definitely a benefit.
Frank's book “The Wounded Storyteller” also identifies the voice we all need to access in the battle with life-threatening or life-altering illness. When we recognize this struggle as an opportunity for journey, we can also recognize the call to help others currently in the "trenches" of illness, to bring about their healing. I definitely feel called to write and those are two of the reasons why: it helps me to access “the voice” I need to battle illness; and for me the writing itself has turned out to be an opportunity to help others with invisible illness which has led to other opportunities to help that don’t involve writing, such as facilitating support groups…
Read the full article on blogging about your illness here
Low-sodium recipe of the month: Grilled Salmon Fillets with Fresh Fruit Salad
Here is another great summertime "for the grill recipe". The fresh fruit salsa is a great way to add a bit of 'summer freshness' to your salmon.
½ small papaya, peeled, seeded, and chopped
Grilled Salmon Fillets with Fresh Fruit Salsa
The fresh fruit salsa in this recipe for grilled salmon complements the distinctive flavor of the fish. Salmon is the top source of some seriously good-for-you essential fatty acids. It’s so versatile you can prepare it in many ways, from basic grilling to sautéing or stir-frying.
By Rosanne Rust, MS, RD, LDN and Cynthia Kleckner
Prep time: 5 minutes
Cook time: 10 minutes
Yield: 4 servings
1 small ripe peach or nectarine, pitted and chopped
1 fresh jalapeno chili pepper, seeded and chopped
1 tablespoon rosemary, basil or thyme
Four 4-ounce salmon fillets with skin on
Olive oil (optional)
Per serving: Calories 270 (from fat 132); Fat 13g (Saturated 3g); Cholesterol 76mg; Sodium 80mg; Carbohydrate 8g (dietary fiber 2g); Protein 27g; Potassium 627mg.
To make a fruit salsa, combine the papaya, peach or nectarine, jalapeno pepper, and your choice of rosemary, basil, or thyme. Cover and chill thoroughly.
Preheat your grill on high; then lower the temperature to moderate heat. If desired, lightly brush the surface of the fish with olive oil. Place the fish skin-side-down on the grill and cook for 10 minutes per inch.
Serve with the chilled fruit salsa.
If you are buying fresh salmon, ask your fishmonger to cut the fillets into individual portions. The presentation will be cleaner and the portions better controlled.
Grilling fish with the skin on prevents the flesh from burning. The skin should be crisp but not burnt. Covering the grill causes the fish to cook from the top down, and you don’t even have to turn it! Remove the fish from the grill using two metal spatulas to prevent the fish from breaking apart.
Latest PH news
Source: European Respiratory Journal Lewis J. Rubin School of Medicine, University of California, San Diego, 9300 Campus Point Dr, M/C 7372, La Jolla, CA 92037, USA. E-mail: firstname.lastname@example.org For over 30 years I have been advising my patients with pulmonary hypertension (PH) to be physically active to a level of exertion that does not produce severe dyspnoea persisting post-exercise, dizziness, syncope or chest pain, based on the ..... [more
For more PH news visit the newsfeed on our website: www.phacanada.ca/news or subscribe to the PH News RSS feed
Source: YorkRegion.com Find a penny, pick it up. All day you’ll have good luck. McKynlea Waters-Goodman, 10, hopes some of that good luck will rub off on her mother, Cindy Winters. Ms Winters suffers from pulmonary hypertension, a rare disease that causes high blood pressure in the pulmonary artery in the lungs. As a result, her heart beats into overdrive. “Your arteries are supposed to be soft like (cooked) macaroni noodles,” she said.“Instead..... [more
Vol. 2 No. 7/8
Connect with PHA Canada:
VIEW PAST ISSUES: www.phacanada.ca/ThePulse
PHA CANADA NEWS & UPDATES:
Keep your pennies coming
Call for Board Nominations
Share your story
PH Resources: your help needed
Community Events Calendar
KEEP YOUR PENNIES COMING
A reminder that the Pennies for PH contest remains open. McKynlea Waters-Goodman has single-handedly collected almost $300 in pennies and the Toronto Chapter is already over $1100 in pennies collected.
Many others around the country are getting involved and collecting pennies so be sure to order your stickers and posters from our office, grab your piggy bank and start collecting.
Photos of ideas for collecting pennies from PHA Canada members are available on PHA Canada's facebook page at www.facebook.com/phacanada
The contest runs until November 30, 2012 and prizes will be awarded for the most pennies collected by a group and by an individual, so keep those pennies coming!
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.
Full nomination packages have been sent out in early June via mail to our members and also available online, or you may contact us at email@example.com
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 Fall 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)
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)