PHA-UK contacts:  Paul Pennington/Elizabeth Hinchey/Bernadette Moore/Hilary Franklin - +44 (0) 207 272 3915 media@phassociation.uk.com

National Kissing Day: July 6th 2010

Charity Calls On Britain To Pucker Up 4 PH To Boost Awareness Of A Serious Lung Condition Only 3% of Us Have Heard Of

The 6th of July sees the official launch of a novel campaign created by the patient support charity, the Pulmonary Hypertension Association UK (PHA-UK), to get more of us to be aware of the incurable lung condition PH (pulmonary hypertension) which is marked by abnormally high blood pressure in the arteries of the lungs.  

PHA-UK’s 2200 members will be leading 29 Pulmonary Hypertension (PH) patient groups from Auckland to Alabama to help raise awareness of PH and get over 40,000 people to provide a blue lipstick print of their lips to help set a new Guinness World Record ™ and boost the profile of the condition.

Research shows that lack of awareness of PH can delay a correct diagnosis of the condition for as much as 2-3 years.  For those who have been diagnosed, public ignorance of PH can lead to feelings of despair and isolation.

For a condition where early diagnosis makes for the best prognosis, alongside getting individuals to Pucker Up 4 PH, members of PHA-UK and their counterparts across the globe will be distributing information on PH and it’s non-specific symptoms, encouraging anyone who lives with unexplained breathlessness to visit their family doctor.  Although PH is rare it’s estimated there are over 2 million people living with undiagnosed cases of COPD (Chronic Obstructive Pulmonary Disease).

Paul Pennington from PHA-UK, who dreamed up the campaign explains the significance of blue lips, “Blue lips or cyanosis, as it’s medically termed, can indicate the presence of number of conditions including PH.  So, as a means to boost awareness of the condition, I developed a Blue Lips logo, as a simple eye catching motif for the charity to try and grab people’s attention and inspire them to want to know more about the disease.  Since its introduction the Blue Lips logo has attracted significant interest both here in the UK and across the World, which for a relatively rare condition that struggles to get recognition, is really great news!”

He added, "Thanks to the enthusiasm of PHA-UK’s supporters and the impact the Blue Lips logo has had in helping to raise awareness of the condition, it has inspired PH patient support groups and associations across the world to want to work together, which is where the idea of a Guinness World Record ™ attempt came in.”

“Such has been the enthusiasm for what we are trying to achieve, it’s been a quite task to satisfy the demand and get everything translated, printed and shipped.  We have delivered several tonnes of material in 10 different languages to patient groups from Quebec to Queensland.  To see it take off as it has is personally very humbling.”

Through the course of the campaign, which runs until Halloween, members of PHA-UK will be doing all they can to get as many people to Pucker Up as part of a friendly competition with other patient groups across the World.  In and amongst a range of activities to get people to lend their lips to the campaign, they’ve written to every major publication and broadcaster, theatre & dance show with the hope of getting as many blue kisses as possible from members of the media.  Every organisation or show taking part will be acknowledged via a roll of honour on the campaigns PuckerUp4PH.com website.

Supporters of the PuckerUp4PH campaign will be running, jogging, partying, disco-ing, car booting, car washing, dressing up and down in blue and doing just about anything legal in blue lipstick to educate others about Pulmonary Hypertension and raise cash for PHA-UK, which celebrates its tenth anniversary this year.

NOTES TO EDITORS:
Representatives from PHA-UK are available to talk about PH and the campaign. We also have a number of case studies willing to be interviewed. 

The Pulmonary Hypertension Association UK (PHA-UK) charity number 1120756 www.phassociation.uk.com provides support, understanding, and information for everyone whose life is touched by Pulmonary Hypertension (PH).

About PuckerUp4PH:  PuckerUp4PH is a two-year global initiative led by PHA-UK in association with 29 PH patient groups across the World.  The Blue Lip Logo was developed in 2007 by Paul Pennington for PHA-UK to try and help improve awareness of the condition both in the public consciousness and within the healthcare profession.  The PuckerUp4PH campaign is supported by unrestricted educational grants from Bayer, Pfizer, Actelion and United Therapeutics.  For more information visit www.PuckerUp4PH.com

-ends-

British Charity Leads The World In Record Attempt To Boost Understanding Of A Condition Only 3% Of Us Have Heard Of
Spring 2010 sees the launch of the latest stage of an international campaign initiated and led by the Rotherham based, national patient support charity, the Pulmonary Hypertension Association UK (PHA-UK) for more of us to be aware of the incurable lung condition which is marked by abnormally high blood pressure in the arteries of the lungs.   
 
Kissing Goodbye To PH Ignorance!
From May 15th 2010, 29 pulmonary hypertension (PH) patient groups from Auckland to Alabama will join forces with the 2000 member British charity PHA-UK ,  to try and get over 40,000 people to provide a Blue Lip print and set a new Guinness World Record whilst generating as much attention about the condition as possible.
 
Blue Lips Across The World
PHA-UK developed the Blue Lips logo in 2007 as a simple, impactful and memorable motif to grab people’s attention and get them to want to know more about the condition.  Blue lips or cyanosis, as its medically termed, can indicate the presence of PH in some people.
 
The Blue Lips logo has special meaning for two families who will feature as part of this year’s campaign, a world apart but united in grief through the loss of loved ones to PH.
 
Alex McGrath from Brisbane was 6yrs old when he lost his battle with the incurable lung disease in 2009 and Amber Newby from London, Kentucky would have been 15 on the 3rd of April 2010.  Both children’s moving stories feature on the PuckerUp4PH campaign website and their families have dedicated themselves to using the Blue Lips logo to raise as much awareness as is possible about PH.
 
Blue Lips Across Britain!
Here in the UK a whole range of activities are being planned kicking off with a mass sponsored Blue Lipped trek at the ‘Just Walk’ event at Goodwood Race course.  Through the course of the campaign which runs until Halloween, people  will be running, jogging, partying, disco-ing, car booting, car washing, dressing up and down in and doing just about anything legal whilst wearing blue lipstick to educate others about PH and raise cash for PHA-UK, which celebrates its tenth anniversary this year.
 
The Blue Lips of 2010
In 2009, PHA-UK conducted a worldwide search for someone who would lend their lips to create a new Blue Lips logo and become ‘The Blue Lips of 2010’, after over 30,000 votes were cast from Toronto to Tel Aviv for candidates from 21 countries, a lady from Puerto Rico, Luz Batista-Santiago who lives with PH, won the right for her lips to be used to create a blue print to feature in a range of  Blue Lips clothing to raise money for all participating patient groups and adorn publicity materials in over 10 languages across the globe.   
 
Why Raising Awareness Of PH Is Vital
Research shows that lack of awareness plays a major role in delaying correct diagnosis, which can take up to three years to be achieved.  For those living with a confirmed case of this mostly invisible, disabling condition, this lack of understanding in the wider community can lead to feelings of isolation.  
 

NOTES TO EDITORS:   
Representatives from PHA-UK and people who live with the condition are available to talk about PH and the campaign.
 
PHA-UK Media Contacts: Bernadette Moore/Paul Pennington/Hilary Franklin/Elizabeth Hinchey media@phassociation.uk.com 020 7272 3915
 
The Pulmonary Hypertension Association UK (PHA-UK) charity number 1120756 www.phassociation.uk.com provides support, understanding, and information for everyone whose life is touched by pulmonary hypertension (PH).
 
About PuckerUp4PH
PuckerUp4PH is a two year global initiative led by PHA-UK in association with 29 PH patient groups across the world.  The Blue Lips logo was developed in 2007 by Paul Pennington for PHA-UK to try and help improve awareness of the condition both in the public consciousness and within the healthcare profession. The PuckerUp4PH campaign is supported by unrestricted educational grants from Bayer, Pfizer, Actelion, United Therapeutics and GlaxoSmithKline.  For more information visit www. PuckerUp4PH.com

March 29 – April 3 Launches U.S. PuckerUp4PH Campaign to Raise Awareness of Pulmonary Hypertension

Contact: Katie Kroner, 202-240-7849, Katherine@PHAssociation.org

PuckerUp4PH/PHA-UK Media Contacts: Paul Pennington//Elizabeth Hinchey + 44 (2) 207 272 3915/ lips@puckerup4ph.com
 
[London, Kentucky] March 29, 2010—Orena Alsip of London, Kentucky will introduce the 2010 PuckerUp4PH Campaign in the U.S., March 29 – April 3 at South Laurel County High School in memory of her 14-year-old daughter Amber Newby who passed away from pulmonary hypertension (PH) in January. PuckerUp4PH is a global attempt to set a Guinness World Record for the largest amount of blue lip prints. The U.S. effort is coordinated by the Pulmonary Hypertension Association (PHA). The campaign was initiated by The Pulmonary Hypertension Association of the United Kingdom (PHA-UK).
 
For six years, Amber struggled with pulmonary hypertension, a rare, often misdiagnosed disease marked by abnormally high blood pressure in the arteries of the lungs. Cyanosis, or blue lips, is a common symptom of PH, and became the inspiration for PuckerUp4PH. Orena chose this week to host the campaign and celebrate her daughter’s legacy because April 3 is the date of Amber’s 15th birthday. “Amber’s biggest dream in life was to help other PH patients,” she said, “For as hard as she fought, she always had hope.”
 
Amber had a passion for making sure other children with PH were diagnosed and treated early. “After Amber’s diagnosis, she was about saving other children from being diagnosed too late,” said Orena. Amber learned about PuckerUp4PH while chatting online with a PH patient in the United Kingdom, where the campaign originated. She hoped to participate this November during Pulmonary Hypertension Awareness month.
 
“Pulmonary hypertension is currently incurable but new therapies and greater public awareness are ushering in an era of better maintenance and earlier diagnosis for many patients,” said PHA President Rino Aldrighetti.  “While greatly saddened as we continue to lose patients like Amber, we see many patients surviving longer with a better quality of life and are justifiably a community of hope.”
 
Paul Pennington of PHA-UK is the global PuckerUp4PH Campaign Director. “We wanted to develop something that was simple, impactful and memorable, linked to pulmonary hypertension which could be used to grab people’s attention and get them to want to know more,” he said, describing the inspiration for the Campaign. “Our global campaign is due to officially launch in early May in 29 countries, but upon hearing Amber’s story, we had to do what we could to celebrate this special young lady’s life and we hope by doing so that we can inspire millions of Americans coast to coast to get involved with the campaign and help make the lack of PH awareness history."
 
PHA will support numerous PuckerUp4PH events like Orena’s over the coming months, and will highlight the effort at the 9th International Pulmonary Hypertension Conference and Scientific Sessions Riding the Wave to a Cure June 25-27 in Garden Grove, California.

Additional information, including a special audio slideshow tribute to Amber made by award winning British writer Julian Preston, which includes photographs of Amber and commentary from her mother Orena, is available on the PuckerUp4PH website: www.PuckerUp4PH.com

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About The Pulmonary Hypertension Association (PHA)
Headquartered in Silver Spring, Md., PHA is the country’s leading organization connecting pulmonary hypertension patients, families, and medical professionals. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, advocacy and awareness. PHA provides free access to information on its website about PH and facilitates over 200 support groups around the nation, helping many of the estimated 30,000 diagnosed patients in the U.S. To learn more, visit: www.PHAssociation.org

About PHA-UK (Pulmonary Hypertension Association UK)
PHA-UK was founded in 2000 by and for PH patients. The charity’s mission is to sek a cure, to provide hope, support and education, to promote awareness and to be an advocate for the Pulmonary Hypertension community. For more information visit www.PHAssociation.uk.com

About PuckerUp4PH
PuckerUp4PH is a two-year global initiative led by PHA-UK in association with 29 PH patients groups across the world. The Blue Lips Logo was developed in 2007 by Paul Pennington for PHA-UK to try and help improve awareness of the condition both in the public consciousness and within the healthcare profession. The PuckerUp4PH campaign is supported by unrestricted educational grants from Bayer, Pfizer, Actelion, United Therapeutics, GlaxoSmithKline and UK Health Matters Ltd. For more information visit www.PuckerUp4PH.com