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.

by Ruth Dolan, PHA Toronto Chapter co-leader

It was a perfect day for golfing on Saturday, May 12^th 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 1^st 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!

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.
 
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 conference2013@phacanada.ca.  We look forward to receiving your creative submissions.

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..."

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:

• caring for yourself (this is a very comprehensive section with contributions from a caregiver and a PH nurse coordinator)
• caring for a child with PH
• caring for your caregiver (tips for patients)

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: livingph@phacanada.ca

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