PHA Canada’s monthly electronic newsletter
Vol 2. No. 4 April 2012
In this issue:
Sad Loss for the PH Community
It is with great sadness that we must inform you of the passing of one PHA Canada's founding Board Members and President of the BC PH Society, Elizabeth McCall. Liz passed away quietly in her sleep on, March 27, 2012. Liz bravely fought her battle against PH since her diagnosis in 2000 and was a true leader in the field of PH in Canada. She was the founder of BCPHS and worked with a dedicated group from across Canada to establish what is now known as PHA Canada. She served as a mentor for many people who started support groups throughout the country over the years and used every opportunity possible to raise awareness about PH and to assure that no one felt isolated living with this disease.
Liz (at centre) with BCPHS Board of Directors
at the 2009 PH symposium
As it would be Liz's greatest wish for us not to mourn her passing, but to celebrate her life, a Celebration of Life Memorial will be held in her honor on Saturday, April 7th from 3-7 PM at the Royal Canadian Legion, Branch 91 at 761 Station Ave., Langford, B.C. What a legacy she has left the province of British Columbia and the national PH community.
Condolences can be directed via email to Liz's close friend and fellow BCPHS Board Member, Margaret Lehmann at email@example.com
and they will shared with Liz's husband Gerry.
Easy way to fundraise: Pennies For PH
g what to do with all of your pennies in light of the Finance Minister's recent announcement of eliminating the penny? Why not donate them to a great cause! "Pennies for PH" has raised funds in the past in both New Brunswick and British Columbia but we would like to see this fundraising initiative spread across the Country! Challenge your friends, family or co-workers to bring in their "Pennies for PH" - you will be surprised at how quickly they add up! This is a great and extremely easy to do fundraising initiative for your workplace, your child's school, your church or social group. For more information on how you can make this a success, contact us at firstname.lastname@example.org
World PH Day - May 5th 2012
The Asociación Nacional de Hipertensión Pulmonar (ANHP) has created the First World Pulmonary Hypertension Day to raise pulmonary hypertension awareness on a global scale. This event will consist of a Scientific Symposium on May 4, 2012, in Madrid, Spain, followed by the main World PH Day events, a cocktail gala and the ANHP General Assembly on May 5.
To date, World PH Day has been supported by a number of PH and related health organizations worldwide, including: PHA, PHA Europe, Sociedad Latina de HP, PHA Slovakia, PHA Japan, PHA Canada, PHA South Africa, SAPH (Saudi Arabia), PH Israel, PHA Norway, PHA Sweden, PHA Poland, FUNDAVHIP (Venezuela), PHA Hungary, PHA Latvia, EURORDIS, NORD, Federación Española de Enfermedades Raras, European Lung Foundation, American Thoracic Society, Scleroderma Foundation, Sociedad Española de Cardiología, Sociedad de Ruematología and European Respiratory Society.
Leading up to the event, PHA Canada will be asking members of the PH community to change their Facebook status to show support and solidarity on May 5. To learn more about the event on the World PH Day website.
Registration Is Still Open for PH Kids Golf Classic
A reminder that the 1st Annual PH Kids Golf Classic is being held at the Mill Run Golf Course in Uxbridge, Ontario on Saturday, May 12th. The funds raised through the PH Kids Golf Classic will go to support the work of PHA Canada through projects that will assist children with PH and their families through educational opportunities, and a portion of the funds raised will go to the establishm
ent of a Conference Scholarship Fund to allow families the opportunity to attend the 2012 International PH Conference in Orlando, Florida. PH Kids Golf 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. 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: Connect with PHers from around the world at the 10th International PH Conference in Orlando
In 1990, four women gathered around a kitchen table in Florida and started an organization that would become the Pulmonary Hypertension Association (PHA). PHA has served as the center point of the US PH community's progress toward new research and treatments, increased awareness, education and support for the people who live and work with this disease on a daily basis. In celebration of PHA's 10th International PH Conference and Scientific Sessions, the conference will be returning to the state where the journey began over 20 years ago.
The International Conference is an amazing opportunity to meet and connect with others living with PH from around the world. It is an incredible life changing 4 day educational opportunity and we encourage everyone to attend. As we know that PH can be financially draining and taking a trip to a conference is not always feasible for patients and their families, we would like to inform you that attendance scholarships are available through PHA US and PHA Canada.
To learn more about these scholarships visit PHA USA's website here
. To request a PHA Canada scholarship application form please email us at: email@example.com
For more information on and to register for The Power of One: From Kitchen Table to Around the World - PHA 10th International PH Conference and Scientific Sessions, Orlando, Florida, can be found on PHA's website here.
Canadian Transplant Games
This year, the 6th Annual Canadian Transplant Games will be held in Calgary, Alberta from July 16th to 22nd. The Games are open to all transplant recipients and their families. The Canadian Transplant Games are not focused on elite athletic performance. It’s all about the pure joy of being healthy enough to participate. It’s about meeting other transplant recipients and the camaraderie and friendship that develop from that common bond. The Games are Canada’s largest organ donation awareness event.
The goals of the Canadian Transplant Games are to:
show the country the life that is possible for organ recipients
encourage an active, healthy lifestyle after transplant
raise public awareness and support for organ donation
honour organ and tissue donors and donor families
give hope to the 4000+ Canadians on transplant waiting lists
Low-sodium recipe of the month
For your Easter table: Chili-Glazed Pork Roast
While a traditional Easter Ham is a little too sodium rich for reduced sodium diets, try this great pork roast recipe with a simple rub that gives this pork dinner recipe a wonderful flavor. The sugar caramelizes during roasting to create a glaze. With just 37mg of sodium per serving this one's sure to be an Easter dinner pleaser. Recipe from Diabetic Living.
Chili-Glazed Pork Roast
This recipe makes 8 servings. One serving equals 3 oz of meat.
1 tablespoon packed brown sugar
1 tablespoon snipped fresh thyme or 1 teaspoon dried thyme, crushed
1 teaspoon chili powder
1 teaspoon snipped fresh rosemary or 1/4 teaspoon dried rosemary, crushed
1/8 teaspoon cayenne pepper
1 2 - 2 1/2 pound boneless pork top loin roast (single loin)
Fresh rosemary sprigs (optional)
Make Ahead Tip
Preheat oven to 325 degrees F. In a small bowl, combine brown sugar, thyme, chili powder, snipped or dried rosemary, and cayenne pepper. Sprinkle brown sugar mixture evenly over roast; rub in with your fingers.
Place roast on a rack in a shallow roasting pan. Insert an oven-going meat thermometer into center of roast. Roast for 1-1/4 to 1-1/2 hours or until thermometer registers 155 degrees F. Cover with foil and let stand for 15 minutes. The temperature of the meat after standing should be 160 degrees F. If desired, garnish with rosemary sprigs. Makes 8 (3-ounce) servings.
Make-Ahead Directions: Prepare as directed through step 1. Cover and chill for up to 24 hours. Preheat oven to 325 degrees F. Continue as directed in step 2.
Nutrition Facts (per serving): recipe makes 8 servings, calories: 134, protein: 20 g, carbohydrate: 2 g, fat: 4g (2g saturated fat), Cholesterol: 50 mg, sodium: 37 mg
Latest PH news
10-year-old UCLA patient lends voice to raise awareness of 'adult' lung disease that affects kids too
Source: UCLA Health and Medicine Newsroom Pulmonary hypertension (PH) sounds like an adult disease, but the life-threatening lung condition strikes children too. Ten-year-old Lucas Van Wormer is one of them. PH is like a kinked garden hose in which the pressure builds and backs up. The heart is forced to work harder to pump blood through the arteries. If the pressure gets high enough, the heart cannot keep up, and less blood circulates through the lungs to pick up oxygen.&nb..... [more
Source: News Medical A genetic pathway previously known for its role in embryonic development and cancer has been identified as a target for systemic sclerosis, or scleroderma, therapy. The finding, discovered by a cross-disciplinary team led by John Varga, MD, John and Nancy Hughes Distinguished Professor of Rheumatology at Northwestern University Feinberg School of Medicine, was recently published in the journal Arthritis & Rheumatism. "We showed, for the first time, that the Wnt ..... [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. 4 Apr 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
The Board of PHA Canada welcomes
back National Manager, Angie Knott, who has returned to the office this week after being on maternity leave following the birth of her beautiful baby girl, Olivia.
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 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
Condo Party Room 1:30 PM - 4:00 PM
Condo Party Room 1:30 PM - 4:00 PM
Mill Run Golf Course 12:00 PM - 9:00 PM
Condo Party Room 1:30 PM - 4:00 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)
Emily Murphy Park 12:00 PM - 3:00 PM