PHA Canada’s monthly electronic newsletter
Vol 2. No. 2 February 2012
In this issue:
"Let Me Breathe" Contributors Recognized
At the February 4th meeting of the Toronto Chapter PHA Support Group, presentations of Awards of Appreciation were made to two of the people who made it possible to create the PH Music video, “Let Me Breathe”, that has had just shy of 2000 hits on You Tube. Keep spreading the music!
Recipient, Yoav Kogan, is the Production Technical Assistant for The RTA School of Media and Coordinator, RTA Public Service at Ryerson University (RTA=Radio & Television Arts). It was through Mr. Kogan and Scott Brown (Vidoegrapher) that the filming of the video was done. The students in this programme were very active in both the video and still photography aspects of the project. Mr. Brown was not available for the Awards event but will share in it with Mr. Kogan.
Mr. Vel Omasic is the Director of Coalition Music Education at their recording studios in Toronto. He was unable to be at the awards event. Mr. Omasic and his colleagues David Henriques, sound Engineer, and Kevin Meikle, Facilities Manager, did everything in their power to make all participants in the making of the video feel welcome, relaxed and confident that this experience would not only be successful but fun. Each of them donated their time, equipment and studio space free of charge!
The last recipient, but really the first, was Mr. J. Paul Adams without whom this amazing awareness project would never have been born. The gift from this generous composer and musician and now, PHA Champion has impacted so many living with PH. He is inspired not only by his niece Emily, to whom he dedicated this song, but by each of you living with and affected by Pulmonary Hypertension. Paul’s vision goes beyond the Toronto PHA support group, beyond North America; he wants to share this song with all those affected with PH worldwide.
Contributed by: Ruth Dolan, Co-Leader, Toronto Chapter
Toronto Chapter Update
The Toronto Chapter PHA Support Group has started 2012 off with lots of energy and ideas about how to move forward to continue to support each other, as well as how to spread awareness about PH. Last month each member completed a questionnaire to help see what members wanted out of their group and what they could contribute to make things happen. One of the challenges that has been identified by the group over the last months and is also high on the US PHA agenda is to find ways to reduce the amount of time from onset of PH symptoms to diagnosis and treatment.
Contributed by: Ruth Dolan, Co-Leader, PHA Canada
Winter Issue of Connections
The Winter Issue of Connections will be hitting your mailbox early this week! This first issue of 2012 is packed full or articles including several submissions from the attendees of Conference 2011 sharing their stories and experiences, articles by Dr. Ian Adatia and Carolyn Pugliese in the Medical Corner as well as several contributions from our members on a variety of topics from caring for your caregiver to raising awareness.
We are always looking for new stories and ideas for Connections. If you have ever thought about sharing your story, we would love to hear from you! We also welcome your ideas and suggestions for articles and topics. Please forward your ideas to email@example.com
Stitching PH-riends Project
With the beginning of the new year 2012, the Toronto PH Support Group began brainstorming ideas to involve members in promoting awareness to pulmonary hypertension (PH).
Last fall, a group of our PH members gathered for the recording of the "Let Me Breathe" music video at the Coalition Music Recording Studio. I was wearing my first Ondas ruffle scarf. One of the members, Irmita, made a comment about possibly selling our knitted creations. What a terrific idea! The more I thought about it before Christmas, the more excited I became. I wanted to launch a project which brought together our friendships and involve current knitters, as well as those willing to learn a new hobby. With ruffle scarves being in high fashion in Toronto, I decided to purchase multiple scarf kits in Ondas and Marina styles, through my wool supplier, Black Sheep and Ewe, and teach interested knitters how to make them.
At our January meeting, my sorority sister came to assist with the 'hands on' demonstration of the process involved. Three of our members took their first steps on this exciting stitching journey. Thus, began my "Stitching PH-riends" knitting project. What an exciting time we had!
At our February meeting, we had one ruffle scarf successfully completed, and another in progress. Members could choose new scarf kits from a bag of multiple colours of wool and styles.
For more information on the kits, visit www.blacksheepandewe.com
(Click on "Products and Videos"; "Scarf Kits" and "Ondas and Marina" to view colour selections.)
For this "Stitching PH-riends" project, we hope to have more interested knitters in the months to come. The first ball of wool for each knitter will be my treat. In subsequent months, they would either purchase the wool themselves at their neighbourhood department stores or wool specialty shops, or order it through me from my wool supplier and reimburse me for their costs. I would like the knitters to absorb the cost of the wool, donate their time, and sell our ruffle scarves at $30 each. The average crafter charges a minimum of double the cost of the materials for the product being sold. Members may also wish to knit their favourite styles of scarves/ cowls/ shawls to sell and set their own prices. Having our sale later in the year will give us ample time to have multiple scarves/goods ready. It is my intent that all proceeds will be donated to PHA Canada for awareness initiatives.
We would welcome hearing from other chapters across Canada, if you'd like to join us in promoting awareness, and become "Stitching PH-riends from Sea to Sea".
Submitted by: Jeannie Tom
PH patient, diagnosed Sept. 2010
For more information or to get involved, contact firstname.lastname@example.org
Upcoming Events & Conferences
5th International Conference: Neonatal and Childhood Pulmonary Vascular Disease
March 9-10, 2012 Hotel Nikko • San Francisco, California
Over the past decade, great strides have been made in our understanding of the pathobiology of pulmonary vascular disease, and from these findings new therapeutic options have emerged. It is increasingly clear that pulmonary vascular pathology is integral to a number of childhood disorders. The San Francisco symposium will bring together international experts to explore current understanding of the basic pathobiology as well as new and future therapies for neonatal, pediatric, and adult pulmonary vascular diseases.
This informative conference will include presentations from four families, three from Canada, who will share their stories of living with pediatric pulmonary hypertension. Families and medical professionals are invited to attend. For more information or to register, please visit www.cme.ucsf.edu
PHKids 1st Annual Golf Classic
May 12, 2012 - Mill Run Golf Course, Uxbridge, Ontario
PH parents Keith and Bonnie Blenkinsop are organizing the 1st Annual PHKids Golf Classic to be held on Saturday, May 12 at the Mill Run Golf Course in Uxbridge, Ontario. More information on this event will be available shortly but their main goal for the event is to raise funds for PHA Canada to support programming for children and families dealing with PH.
The Power of One: From A Kitchen Table to Around the World June 22-24, 2012 Renaissance Orlando at Sea World, Orlando, Florida
PHA USA conferences offer opportunities for every attendee: Scientific Sessions for medical professionals seeking to enhance their knowledge of the disease, Patient/Family Led and Medically Led Sessions for patients and their families, and Meet-Ups for the community. The 10th International PH Conference will feature 15 Patient/Family Led Sessions, 40 Medically Led Sessions, and 15 Support Group meetings focused on a variety of topics. If you have never had the opportunity to attend one of these conferences, you will not want to miss this amazing opportunity! For more information on conference sessions, scholarships and more, please visit www.phassociation.org
Low Sodium Recipe of the Month - Hoosier Chili
Chili is another cold weather favorite to warm you up on those chilly winter days. The following recipe is a low-sodium choice for chili lovers. It is also diabetic friendly.
Prep: 20 min. Cook: 1-1/2 hours
Yield: 12 Servings
2 pounds lean ground beef (90% lean)
2 cups chopped onion
3/4 cup chopped celery
1/2 cup chopped green pepper
3 garlic cloves, minced
1 teaspoon salt, optional
1/4 teaspoon pepper
1 tablespoon brown sugar
3 tablespoons chili powder
2 cans (14-1/2 ounces each) stewed tomatoes
1 can (46 ounces) tomato juice
1 can (10-1/2 ounces) beef broth
1/2 cup uncooked elbow macaroni
1 can (15 ounces) kidney beans, rinsed and drained
In a Dutch oven or soup kettle, brown beef until no longer pink. Add onion, celery, green pepper and garlic. Continue cooking until vegetables are tender. Add all remaining ingredients except last two; bring to a boil. Reduce heat; cover and simmer for 1-1/2 hours, adding macaroni for last half hour of cooking time. Stir in the beans and heat through. Yield: 12 servings (about 4-1/2 quarts).
Nutritional Facts 1 cup (prepared with no-salt-added tomatoes, reduced-sodium tomato juice and broth; prepared without added salt) equals 230 calories, 7 g fat (3 g saturated fat), 48 mg cholesterol, 268 mg sodium, 23 g carbohydrate, 5 g fiber, 20 g protein. Diabetic Exchanges: 2 lean meat, 1-1/2 starch.
Vol. 2 No. 2
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