June 10, 2017 – Run/Walk for Research

Posted by phatoronto on April 19, 2017  |   Comments Off

Run/Walk for Research
Location: Ajax Rotary Park (177 Lake Driveway W, Ajax, ON L1S 7J1)
Date:  Saturday, June 10, 2017, 9 a.m.

The Fourth Annual PHA Canada Run/Walk for Research is on Saturday June 10, 2017, with registration beginning at 9:00 a.m. and the run/walk starting at 9:30 a.m. We will be hosting the event on the Ajax Waterfront Trail again this year, starting and ending at Rotary Park. Last year we had 111 participants join us and were able to raise $11,475! We are hoping this year’s event will be just as successful!

Participate in the event!

Register by June 3rd. Registration is $10 (waived if you collect over $15).

Donate online:

Visit www.phacanada.ca/runwalk2017 to make a donation.

Additional Information: 

Joseph and Renae Mohammed host this event every summer in honour of their mom Judy, who was diagnosed with Idiopathic Pulmonary Arterial Hypertension (IPAH) 8 years ago. IPAH is when the arteries of the lungs become narrowed, making it more difficult for the heart to pump blood forward through the lungs. This places great stress on the heart and leads to enlargement of the heart. There is no known cause for the disease. Some symptoms of IPAH include shortness of breath that worsens with physical activity, cough, fatigue, dizziness, retention of fluid resulting in swollen legs, feet and hands, chest pain and heart failure. Statistics show survival of about three years if the disease goes untreated. 50% of patients survive five years or more from diagnosis. IPAH is a debilitating, life-threatening illness with no cure.

It would be greatly appreciated if you could seek sponsorship to participate in this event – every little bit counts! Tax receipts can be provided, if requested, for sponsorships exceeding $20, as long as the name, address and phone number of the sponsor is provided. Cheques are payable to PHA Canada. The registration fee for this event is $10, however, this will be waived if you are able to raise over $15! When you arrive at the run/walk with your sponsor sheet and collected funds, you will be entered into a draw for some prizes! The run/walk will take place, rain or shine, and refreshments will be provided for you after you have completed the 5K. If you know someone who would like to participate with you in this event, all are welcome – please let us know in advance so we can accommodate them with regards to the permit and refreshments. Updated pledge forms to follow. Please RSVP no later than June 3. Thank you and we hope you can make it!

If you are unable to attend the event, but would still like to donate to PHA Canada, you can do so here.

http://www.phacanada.ca/en/news-and-events/events-calendar/2017-06-10-runwalk-for-ph-research/

 

October 13-14, 2017 – Eastern Regional PH Symposium

Posted by phatoronto on February 22, 2017  |   Comments Off

symposium
Eastern Regional PH Symposium
Location: Westin Prince Hotel, Toronto (900 York Mills Rd, North York, ON M3B 3H2)
Dates: October 13-14, 2017

We’re excited to announce that this regional educational and networking event will be held at the Westin Prince Hotel in Toronto on October 13-14, 2017. Join us Friday night for a special welcome reception and Saturday for a full day of educational sessions featuring medical experts and your PH peers. While presentations will primarily be in English, we are pleased to announce that a portion of the program will be in French.

More info coming soon!

www.phacanada.ca/easternsymposium2017

May 5, 2017 – World Pulmonary Hypertension Day

Posted by phatoronto on February 22, 2017  |   Comments Off

WorldPHDay


Paint Canada Purple for #WorldPHDay

Friday, May 5, 2017 marks the 6th annual World PH Day. This year again, PHA Canada will celebrate and spread awareness of PH by illuminating several Canadian Monuments in Purple.

In 2014, 2015, and 2016, thanks to the efforts of members of our community, monuments have been illuminated in periwinkle on May 5th from shore to shore including landmarks such as: BC Place, Vancouver; Calgary Tower, Calgary; High Level Bridge, Edmonton; CN Tower, Toronto; Niagara Falls, Niagara; Ottawa Heritage Building, Ottawa; and Olympic Tower, Montreal!

Source: http://www.phacanada.ca/en/news-and-events/worldphday2017/
Source: http://worldphday.org/

Join our FB Event Page: https://www.facebook.com/events/220130228453143/

This year 11 monuments across Canada will be lighting up purple on May 5, 2017 for #WorldPHDay! We thank all those participating and hope that this event brings more awareness to this disease.

BC: Science World, Telus Garden (Vancouver)
Alberta: High Level Bridge (Edmonton)
Ontario: Niagara Falls (Niagara); Welland Canal Bridge (Welland); Toronto City Hall, Toronto Sign, and CN Tower (Toronto)
Quebec: Olympic Stadium (Montreal); Sherbrooke City Hall (Sherbrooke); and Plessisville City Hall (Plessisville)

World PH Day 2017

Telus Garden, Vancouver BC

Science World, Vancouver BC

Science World, Vancouver BC

High Level Bridge, Edmonton AB

High Level Bridge, Edmonton AB

Welland Bridge, Welland ON

Welland Bridge, Welland ON

The Niagara Falls, ON

The Niagara Falls, ON

CN Tower, Toronto ON

CN Tower, Toronto ON

City Hall, Toronto ON

City Hall, Toronto ON

TO Sign, Toronto ON

TO Sign, Toronto ON

The Stadium, Montreal QC

The Stadium, Montreal QC

City Hall, Plessisville QC

City Hall, Plessisville QC

Hôtel de ville de Sherbrooke, QC

Hôtel de ville de Sherbrooke, QC

October 24 – October 30, 2016 – Run Walk, Swim or Bike/Spin PH Challenge

Posted by phatoronto on October 3, 2016  |   Comments Off

 

PH Challenge 2016

PH Challenge 2016


Third Annual Run Walk, Swim or Bike/Spin PH Challenge

October 24, 2016 – October 30, 2016

BWG Leisure Centre
471 West Park Ave.
Bradford ON L3Z 0J3

Come participate in this week-long Run, Walk, Swim or Bike/Spin Challenge raising funds for the Pulmonary Hypertension Association of Canada.

Between the October 24th to October 30th, you are invited to Run/Walk, Swim, or Bike/Spin as many kilometres as you can, to record your distance, and to collect pledges and donations from friends and family for your participation in the event. Please inform Name and contact of contact person by November 1st of how much money you have raised in order to qualify for the “Most Money Raised” prize.

You do NOT have to be a member of the BWG Leisure Centre to participate, but it will be the location to register and participate in the Awards Ceremony. You can participate in this event in your own community.

Register at the BWG Leisure Centre before October 24th to get your pledge sheets; entrance fee is $20. Challenge yourself and invite your friends to run, walk, swim or bike/spin the greatest distance you can in 7 days.

Awards ceremony will be Thursday, November 3 at the BWG Leisure Centre at 10:00am and earlier at the pools for the swimmers at 06:45 am.

BWG Mayor Rob Keffer will give a speech for the Awards Ceremony along with attendace of a representative Jody Hamilton from the ON Lung Association. Special thanks to Laura Vree of Sweet Handmade Cookies, who again this year provided the delicious “cookie medals”.

Donations can be made online to: www.phacanada.ca/phchallenge-donate or collected and logged on donation and pledge forms.

Download registration, donation and pledge sheets here on the website:
http://www.phacanada.ca/en/news-and-events/events-calendar/2016-10-24-third-annual-runwalk-swim-or-bikespin-ph-challenge

Join and share our FB Event Page: https://www.facebook.com/events/1702618140062577/

Swimmers 2014

May 5, 2016 – World Pulmonary Hypertension Day

Posted by phatoronto on March 20, 2016  |   Comments Off

WorldPHDay

Paint Canada Purple for World PH Day
Thursday, May 5, 2016

Thursday, May 5th, 2016 marks the 5th annual World PH Day. This year again, PHA Canada will celebrate and spread awareness of PH by illuminating several Canadian Monuments in Purple.
In 2015, thanks to the efforts of members of our community, 14 monuments were illuminated in periwinkle from shore to shore including landmarks such as: BC Place, Vancouver; Calgary Tower, Calgary; High Level Bridge, Edmonton; CN Tower, Toronto; Ottawa Heritage Building, Ottawa; and Olympic Tower, Montreal!

Learn more here by visiting http://www.phacanada.ca/en/get-involved/fundraising-and-awareness/paint-canada-purple-for-world-ph-day/

Join and share our Facebook Event: https://www.facebook.com/events/1068561706518678/

June 25, 2016 – PHA Canada Run/Walk for Research

Posted by phatoronto on March 13, 2016  |   Comments Off
Run/Walk for Research 2015

Run/Walk for Research 2015

PHA Canada Run/Walk for Research
Saturday, June 25, 2016 9:00AM–12:00
Ajax Rotary Park (177 Lake Driveway W, Ajax, ON L1S 7J1)

It’s that time of the year again –the third annual PHA Canada Run/Walk for Research is set to take place on Saturday June 25, 2016 with registration beginning at 9:00 a.m. and the run/walk starting at 9:30 a.m. We will be hosting the event on the Ajax Waterfront Trail again this year, but due to construction, the run/walk will be starting and ending at Rotary Park. Last year we had 98 participants join us and were able to raise $11,888.50 –we are hoping this year’s event will be just as successful!

As many of you know, Joseph and I host this event every summer in honour of our mom, who was diagnosed with Idiopathic Pulmonary Arterial Hypertension (IPAH) 7 years ago. IPAH is when the arteries of the lungs become narrowed, making it more difficult for the heart to pump blood forward through the lungs. This places great stress on the heart and leads to enlargement of the heart. There is no known cause for the disease. Some symptoms of IPAH include shortness of breath that worsens with physical activity, cough, fatigue, dizziness, retention of fluid resulting in swollen legs, feet and hands, chest pain and heart failure. Statistics show survival of about three years if the disease goes untreated. 50% of patients survive five years or more from diagnosis. IPAH is a debilitating, life-threatening illness with no cure.

It is extremely important to our family to continue to raise awareness and funds for PHA Canada’s research program to hopefully one day find a cure for our mom and others like her. It would be greatly appreciated if you could seek sponsorship to participate in this event – every little bit counts! Tax receipts can be provided, if requested, for sponsorships exceeding $15, as long as the name, address and phone number of the sponsor is provided. Cheques are payable to PHA Canada. The registration fee for this event is $10, however, this will be waived if you are able to raise over $15! When you arrive at the run/walk with your sponsor sheet and collected funds, you will be entered into a draw for some prizes! The run/walk will take place, rain or shine, and refreshments will be provided for you after you have completed the 5K! If you know someone who would like to participate with you in this event, all are welcome – please let us know in advance so we can accommodate them with regards to the permit and refreshments. On this page there is a link to a pledge form. Please RSVP no later than June 18. Thank you and we hope you can make it!

If you are unable to attend the event, but would still like to donate to PHA Canada, you can do so here: phacanada.ca/runwalkforresearch

Contact for more info:
Renae M (renae.mohammed@gmail.com)

Download the Pledge Form: Run-WalkforResearch-PledgeForm
Download the Donation Form: Run-WalkforResearchDonationForm

July 15, 2016 – GolPH for PH

Posted by phatoronto on February 18, 2016  |   Comments Off

golpher_logo

Join the 2nd annual GolPH for PH tournament, raising awareness of pulmonary hypertension and funds to benefit the Pulmonary Hypertension Association of Canada!

Where:
Lionhead Golf and Country Club
8525 Mississauga Road, Brampton, ON L6Y 0C1

When:
Friday, July 15, 2016 (8am Shotgun)

Why:
To raise awareness and funding to PHight Pulmonary Hypertension (PH)

Cost (includes golf, cart, lunch, all games/prizes):
$175 per person (entry is eligible for a draw for a Weber BBQ)
Early Bird Foursome Entry – $650 for 4 people if paid by June 1, 2016

Register here: www.phacanada.ca/GolPHforPH

Event Organizer:
Pat Paulin
Tel: 415-904-8703
E-mail: ppaulin08@gmail.com

Join and share our Facebook Event Page: https://www.facebook.com/events/1107332042652084/

 

GolPH 2015

Equitable drug access urged for patients with rare, potentially fatal lung disease

Posted by phatoronto on December 21, 2015  |   Comments Off

Physicians, patients and caregivers remind Health Minister of devastating consequences when treatment decisions for PAH are taken out of medical experts’ hands

TORONTO, Dec. 3, 2015 /CNW/ – Ontarians affected by pulmonary arterial hypertension (PAH), a rare but serious, progressive and potentially fatal lung disease, gathered at Queen’s Park today to urge Health Minister Dr. Eric Hoskins to make Opsumit (macitentan) publicly accessible as a treatment choice for patients in Ontario. It is the only oral treatment proven in a randomized controlled trial to reduce long-term morbidity in patients, including reductions in PAH worsening and hospitalizations.1

“On behalf of the Pulmonary Hypertension Association of Canada and the Scleroderma Society of Ontario, we are calling on the Ontariogovernment to urgently fund Opsumit as an option for those living with PAH, a rare, serious and complex lung disease,” says Anna McCusker, Executive Director of the Scleroderma Society of Canada and Ontario. “Our community should be feeling hopeful today to have an important new therapy for this highly-individualized condition, made more complex when caused by scleroderma. Instead, we are extremely concerned that the lack of access to Opsumit will lead to undue and avoidable patient suffering.”

Drug not accessible in Ontario, despite positive funding recommendation 

Two years ago, Health Canada’s approval of Opsumit offered new hope for adult PAH patients and their physicians.2 In January 2015, the PAH community was further encouraged by the Common Drug Review (CDR) recommendation that Opsumit be publicly funded for the treatment of PAH to reduce morbidity (severity of illness).3

 However, despite the positive CDR funding recommendation, Ontarians affected by PAH still do not have publicly-funded access to Opsumit through the Ontario Public Drug Program (OPDP). Under this current paradigm, Ontario physicians are limited to prescribing Opsumit only to PAH patients with private health insurance, or the ability to pay out-of-pocket—despite their view that a patient who depends on public funding might benefit from receiving this treatment.

“It is unacceptable that for the past year, Ontario PAH patients who rely on the public drug plan have been prevented from accessing Opsumit because we as PAH specialists are unable to exercise the individual clinical judgment that is essential to the proper treatment of this disease,” says Dr. Sanjay Mehta, MD, FRCPC, FCCP, Director of the Southwest Ontario Pulmonary Hypertension Clinic at the London Health Sciences Center in London, Ontario, and Chair of PHA Canada. “Our community is very willing to work with government to resolve this situation, but we are also here today to remind elected officials and decision-makers of the devastating consequences of taking treatment decisions out of the experienced hands of PAH medical experts.”

History set to repeat itself if Opsumit is not accessible

Unfortunately, delays in accessing much-needed therapies are all too familiar for the PAH community, and previous limitations, imposed with little specialist consultation, still haunt Ontario patients and families. Over the course of 2008 and 2009, the OPDP made a decision that restricted PAH patients’ treatment options to a stepped approach, requiring specialists to follow a set procedure and prescribe medications in a particular order, instead of allowing them to prescribe the medication(s) they felt would most benefit their patients with this serious lung disease.4

 PAH patients affected by this decision suffered greatly—and one Ontario mother died as a result of restricted access to treatment.5 This patient, whose story made front page news, was told by the province that a certain medication prescribed by her specialist would be covered only if she scaled back her treatment and stopped another effective drug. When she did, her condition deteriorated so rapidly that she passed away soon after. As the result of her death and advocacy efforts by the PAH community, the OPDP removed the restrictions.

“The PAH community was grateful to see the province abolish the procedure that enforced a one-size-fits-all approach to treating this complex disease, but six years later, we are worried that since the province has not yet listed Opsumit, we find ourselves in a similarly precarious position,” says Ruth Dolan, Director at PHA Canada and Co-Leader of the Toronto PH Support Group, and mother to a PAH patient. “We urge Health Minister Eric Hoskins to immediately make this treatment accessible to PAH patients who rely on public funding. Treatment decisions for this complex disease must be left in the hands of specialists who are best able to assess their patients’ individual needs, benefiting their long-term health at diagnosis and beyond.”

About Pulmonary Arterial Hypertension

In PAH, the arteries (blood vessels) of the lungs become narrowed by scar tissue, sometimes to the point of being completely closed. Those affected by PAH suffer from high blood pressure in the lungs, which results in strain and enlargement of the heart, which ultimately leads to heart failure and death. PAH is a common complication of scleroderma, a chronic hardening and contraction of the skin and connective tissue. PAH shares many symptoms with other diseases, which often leads to lengthy delays in diagnosis, and misdiagnosis. There is currently no cure for PAH, and if left untreated, patients live an average of two to three years. 

 

Please visit www.phacanada.ca or www.sclerodermaontario.ca for more information.

 

___________________________

 1 Pulido T, Adzerikho I, Channick RN, Delcroix M, Galiè N, Ghofrani H-A, et al (2013). Macitentan and Morbidity and Mortality in Pulmonary Arterial Hypertension. New England Journal of Medicine. 369(9). pp.809-818. Retrieved from http://www.nejm.org/doi/pdf/10.1056/NEJMoa1213917. Accessed on December 1, 2015.

2 Health Canada. Drugs and Health Products – Opsumit. Retrieved from http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2013_opsumit_161372-eng.php. Accessed on December 1, 2015.

3 Common Drug Review. CDEC Notice of Final Recommendation. Retrieved from https://www.cadth.ca/sites/default/files/cdr/complete/cdr_complete_SR0364_Opsumit_Jan-30-15.pdf. Accessed on December 1, 2015.

4 Progress in Ontario for patients with uncommon but serious lung disorder, but more access to current treatments still needed [news release]. Toronto, ON: Pulmonary Hypertension Association of Canada; May 15, 2009. http://www.newswire.ca/news-releases/progress-in-ontario-for-patients-with-uncommon-but-serious-lung-disorder-but-more-access-to-current-treatments-still-needed-537726201.html. Accessed on December 1, 2015.

5 Leeder J. Funding for rare-disease therapy under the microscope. The Globe and Mail. November 2, 2009. http://www.theglobeandmail.com/news/national/funding-for-rare-disease-therapy-under-the-microscope/article1347968/. Accessed on December 1, 2015.

Source: http://www.newswire.ca/news-releases/equitable-drug-access-urged-for-patients-with-rare-potentially-fatal-lung-disease-560423961.html

November 5-11, 2015 – Run, Walk, Swim or Bike/Spin Challenge

Posted by phatoronto on September 21, 2015  |   Comments Off

 

RunWalk

Run, Walk, Swim or Bike/Spin Challenge
November 5-11, 2015
BWG Leisure Centre
471 West Park Ave, Bradford, ON L3Z 0J3

Come participate in this week-long Run, Walk, Swim or Bike/Spin Challenge raising funds for Pulmonary Hypertension Association of Canada.

You do NOT have to be a member of the BWG Leisure Centre to participate, but it will be the location to register and participate in the Awards Ceremony.

Register at the BWG Leisure Centre before November 5th to get your pledge sheets; entrance fee is $20. Challenge yourself and invite your friends to run, walk, swim or bike/spin the greatest distance you can in 7 days.

There are 10 categories and Gold, Silver and Bronze prices in each category:

Top 3 distances – run (male)
Top 3 distances – run (female)

Top 3 distances – walk (male)
Top 3 distances – walk (female)

Top 3 distances – bike/spin (male)
Top 3 distances – bike/spin (female)

Top 3 distances – recreational swim (male)
Top 3 distances – recreational swim (female)

Top 3 distances – competitive swim (male)
Top 3 distances – competitive swim (female)

Award ceremony will be on November 12th at the BWG Leisure Centre.

Swim Awards ceremony: Thursday, Nov. 12 at 7:00AM by the pool at the BWG Leisure Centre.
All other awards ceremony: Thursday, Nov. 12 at 8:00am in the Community Corner of the BWG Leisure Centre with Mayor Rob Keffer to do the address for us.

Download the registration, donation and pledge sheets here or pick them up at BWG:  http://www.phacanada.ca/en/news-and-events/events-calendar/2015-11-05-2nd-annual-run-walk-swim-bike-ph-challenge/

Join our Facebook Event: https://www.facebook.com/events/1654190008196164/1654256838189481/

For more info contact the BWG or Ruth (ruth@phatoronto.ca)

Pledge online here:  www.phacanada.ca/phchallengedonations. Please note: All donors please include the participate’s name of who you are sponsoring under the “message” comment box so we can keep track where the donations goes for who! Thanks!

PHChallenge

Help us make treatments accessible to all PAH patients

Posted by phatoronto on June 18, 2015  |   Comments Off

TreatmentAccess

We need your help in advocating to our provincial and territorial governments to ensure that all Health Canada-approved PAH medications are accessible to patients—at diagnosis and beyond. Patients’ lives depend on ensuring that initial access to PAH medications is not limited.

The challenge the PAH community currently faces is that the recently released Therapeutic Review Recommendation Report for Drugs for PAH seeks to severely restrict physicians’ ability at diagnosis to exercise the individual clinical judgement essential to the proper treatment of PAH. It is important that the provinces and territories do not implement these recommendations, and that all Health Canada-approved PAH medications are accessible to PAH patients as initial therapy. A one-size-fits-all approach to managing this rare disease will not work, and lives could be at risk. With your support, we can make a difference for all of those affected by PAH. The voice of every person affected by Pulmonary Hypertension is crucial.

See how you can contribute: http://www.phacanada.ca/en/get-involved/advocacy/

Read the full CADTH Recommendations Report here: https://www.cadth.ca/drugs-pulmonary-arterial-hypertension

Join and share our Facebook Event: https://www.facebook.com/events/1457754531197750/

Visit http://www.takeactionpah.ca/ for more information.

PAHtreatments