PH Awareness Month frenzy!
November is approaching fast and we need your help to make sure that this year’s PH Awareness Month makes a big periwinkle splash! It’s possible for everyone to get involved in awareness-raising activities (big or small): at work, at school, among family and friends, in your neighbourhood, at your community centre, on your social media channels … We have tools to help you help us spread PH awareness everywhere in Canada!
Here are some ways in which you can get involved:
Join our Lend a Hand Campaign:
This year the Lend a Hand
campaign is serving as both an awareness-raising and a fundraising tool! In addition to getting people to sign paper hands in acknowledgement of PH, participants will be able to collect small donations (a loonie or a toonie) for each signed hand. Funds raised through this campaign will be matched by our partner Actelion up to $10,000. Half of total raised funds will be directed towards our research scholarship! To order your Lend a Hand
kit(s) fill-out the online form
Organize a 6-Minute Walk for Breath:
Organizing a 6-Minute Walk for Breath
event is a great way to raise PH awareness and can also serve to raise funds to support PHA Canada programs. We’ve got documents and material to help you organize this kind of event. If you would like more information or a kit, email Mariane at email@example.com
Host an information booth or give a speech at a community event…
there are many ways in which you can use November Awareness Month to sensitize people around you about PH! Contact Susan, our Community Relations and Volunteer Coordinator (firstname.lastname@example.org
), for ideas, and tools (for example we have a PH awareness PowerPoint presentation all ready to go!).
Attend a PH community event:
Our community members have been active planning PH Awareness Month events! We invite you to take a look at the event postings on our Event Calendar
to find out about the events that are taking place near you.
Raise funds to support PHA Canada
PH Awareness Month is the perfect time of year to raise funds to support PHA Canada’s programs and activities. As a charity serving the PH community, we rely on donations to
maintain programs and develop new initiatives to support you and all those whose lives are affected by pulmonary hypertension. We are grateful for the contributions of all our members and supporters— the time and energy they dedicate to the cause, their ideas and messages of hope, the love they show us every day, and their financial support, which help us achieve our vision of a better life for all Canadians affected by PH.
If you’re willing to go the extra mile and help raise funds to support our activities, we invite you to create a personal online donation page, through which you can ask family and friends to make a financial contribution to PHA Canada. Online fundraising is for everyone
, not just the tech-savvy. Creating your own personal fundraising page is quick and easy to do and is a great way to reach out to all your contacts and spread PH awareness at the same time.
to start your own online fundraising campaign!
If you already have a personal fundraising page in our general fundraising campaign, please note that we have started a new fundraising campaign for PH Awareness Month and that we will be deactivating all inactive personal pages in our general campaign. If your page is active or if you wish to use it as part of our 2015 Awareness Month fundraising efforts, please let us know by October 15. Email Mariane at email@example.com
A letter to the PH community from Angie Knott
It is with a heavy heart, and after much soul searching and reflection, that I announce my resignation as the National Manager of PHA Canada.
This is not a decision I have made lightly, after over seven years at PHA Canada and almost ten years of involvement in the PH community, this is one of the most difficult decisions I have ever made. But all things must eventually come to and end, and I believe that both personally and professionally, the time has come for me to move on to a different path.
To each and every member of this community, to all of you affected by PH, I want you to know that for the last ten years I have been in awe of and inspired daily by the remarkable people who face this illness with courage, determination, and generosity to others.
I came into this world, much like many of you: never having heard of pulmonary hypertension. During my time here I have learned more about the disease than most ever will, I have gotten to know and admire so many amazing PHighters, I have grieved the loss of many of them, I have made friendships that I know will last long beyond my time at PHA.
This community (the PHighters, their families, the PH nurses, the PH doctors) is one of a kind. It is what has sustained me and made me want to give my all and fight like hell on behalf of anyone that has to face this disease.
Thank you to each and everyone of you for showing me what true courage is, for teaching me to embrace and make the best of every moment, and for everything you give of yourselves every day so that others will have an easier path in the future.
I hope to remain involved in the community in one way or another. I am not sure yet where my path will lead but I am also excited to be embarking on a new journey.
I hope that you will continue to support the amazing work PHA Canada does to support this community, and to make a better life for Canadians affected by pulmonary hypertension. This is your organization and is always as strong as you make it. From the bottom of my heart, thank you, thank you, thank you for all you have given this community and to me.
This is not goodbye but farewell for now.
All the best,
A letter to the PH Community from Dr. Sanjay Mehta, PHA Canada Board Chair
Parting Ways with a True PHriend of the Canadian PH Community
As you have already heard or perhaps just learned in this issue of PH Pulse
, Angie Knott has decided to step down as National Manager of PHA Canada.
It is with sadness and indeed some trepidation for the future that the Board has accepted her resignation.
It’s also a time to look back on our brief history since our founding in 2008, and how important Angie has been to our founding, our growth, and all of our programs.
PHA Canada came together from several small regional and provincial PH support groups, thanks to the vision of our Founding Board Members and Angie, who already had a wealth of background knowledge and expertise from her previous work with the large, well-established PHA in the US. Angie helped us build a truly national organization, became our first staff member and has always been our National Manager. Thanks to the hard work and commitment of Angie, our other dedicated staff, and the Board of Directors, PHA Canada has become a stable, strong, effective organization committed to supporting PH patients and their caregivers, and has become a widely-recognized voice on behalf of all Canadians living with PH.
Angie was always impressed with and been incredibly motivated to do more to support those dealing with the burden of PH in themselves or in a family member or friend. Her desire to help was the basis for her unfailing willingness to give of herself to do whatever needed to be done to show PH patients and caregivers they were not in fact alone and isolated, but part of a community. Angie has always wanted to show that PHA Canada cared for them and was here to help them live better with PH.
It’s been said, “The only constant in life is change”. Wonderful, caring, generous people, like Angie, will come into PHA Canada, and some will have to move on. However, over the last 7 years, PHA Canada has become a strong, sustainable organization lead by a strong Board of Directors. We are fortunate in that we still have wonderfully caring, committed, and incredibly energetic staff who will work hard to carry us through some challenges ahead. We will continue our vital work to educate, support, and care for PH patients and their caregivers.
Angie’s contributions to Canadians affected by PH will not be forgotten. Moreover, given her passion and commitment to the support and care of Canadian PHriends, we welcome Angie to remain involved in PHA Canada and fully expect her to continue to contribute to the Canadian PH community.
Thank you, Angie, for your caring and dedication, your commitment and passion, and for your hard work in getting PHA Canada to where we are today! We wish you well in your future!
Dr. Sanjay Mehta
PHA Canada Board Chair
Bellerophon phase II win could mean new portable option in PAH
—Bellerophon Therapeutics Inc.'s inhaled nitric oxide seems poised to become a key add-on, orphan therapy in pulmonary arterial hypertension (PAH) and, if all goes well, could also end up the only approved therapy in pulmonary hypertension when associated with chronic obstructive pulmonary disease (COPD).
Meta-analysis: Exercise training benefits patients with pulmonary hypertension
—Exercise training is safe and effective for patients with pulmonary hypertension, according to a meta-analysis published in Circulation: Heart Failure.
Calcilytics Could be Used to Treat Idiopathic Pulmonary Arterial Hypertension
—A recent study from Japan has shown that dividing cells involved in causing idiopathic pulmonary arterial hypertension (IPAH) may be stopped with a new type of drug called a calcilytic.
Individual treatment a must for PAH patients
—A Cornwall resident and ambassador for the Pulmonary Hypertension Association of Canada will be advocating against a one-size-fits-all approach toward the rare, life-threatening lung disease.