Headline News
2007
12/22/07 New Lungs the Best Gift for Aimee Blakiston
(The Sunday Times) -- Aimee Blakiston wouldn't be here this Christmas if it wasn't for "the best gift ever'' - a double lung transplant that saved her life in February. The Dardanup teen was close to death when her agonising wait ended dramatically in a late-night mercy dash of donor lungs from the eastern states to Perth.
12/19/07 Actelion to Start Phase III Study on Hypertension Drug Actelion-1
(Thomson Financial News ) Zurich, Switzerland -- Actelion Ltd said it is starting a phase III trial on its hypertension drug Actelion-1. The Swiss pharma firm said the study is designed to evaluate the safety and efficacy of the drug in delaying disease progression and mortality in patients with pulmonary arterial hypertension.
12/18/07 Survey of More than 600 Patients Treated with Tracleer(R) (bosentan) Reveals Actelion Sure Steps(R) Patient Support Program Provides Valuable Educational Information
(PRNewswire) San Francisco, Calif. -- Actelion Pharmaceuticals US, Inc. announced results of a recent Harris Interactive(R) survey, showing that an overwhelming majority of Tracleer patients enrolled in Sure Steps find the patient support program valuable, and feel that their knowledge of pulmonary arterial hypertension (PAH) and Tracleer have improved due to the program.
12/18/07 Anthera's A-001 Receives Orphan Drug Status for the Prevention of Acute Chest Syndrome in Patients With Sickle Cell Disease
(PRNewswire) San Mateo, Calif -- Anthera Pharmaceuticals, Inc. announced that the U.S. Food and Drug Administration (FDA) Office of Orphan Product Development has granted A-001 orphan drug status for the prevention of acute chest syndrome in patients with sickle cell disease. ACS is believed to be a contributor to pulmonary function abnormalities, pulmonary hypertension, and long-term mortality.
12/14/07 PH Parent Lobbies 111 Members of Congress
PHA board member, PH parent and PH advocate extraordinaire, Carl Hicks, visited 111 Members of Congress in two days about the PH Research and Education Act of 2007.
12/13/07 PH Scarves for Katrina Victims
Several months ago 4 'PH'riends, Amy Stamp, Maggie Bonatakis, Patty Farrow and Annette Markin decided to work together to help their community by making scarves for the needy. They knitted and crocheted 30 scarves in all and labeled each with the message, "Made Especially for You by the PH Community." Learn more and view pictures
12/12/07 Hub for the Holidays
Want to add a few new tunes to your Christmas music list? Hub-Bub, in Spartanburg, S.C., has made a Christmas CD benefiting the Pulmonary Hypertension Association that will warm your heart and delight anyone you give it to. Enjoy silly songs like, “St. Nick Stole my Cookies” and classics like “Away in a Manger." The CD is dedicated to Jenni Messel, who passed due to her PH last February. She was a support group leader, fun walk organizer, and led the efforts to have November declared as “PH Awareness Month” by the County Council. Another one of her goals was to involve the music community in her efforts to raise awareness of PH. Her friends and family have accomplished this for her by creating this CD, which had one of the most successful CD-release concerts of any Hub-Bub Holiday CD. All the songs are performed by local Spartanburg musicians, including several friends and family members of Jenni. You can purchase this very special Christmas CD online here: http://www.hub-bub.com/
12/11/07 November is Pulmonary Hypertension Awareness Month
Bailey Brewer's story raises awareness in her local newspaper for awareness month. Read her story
12/8/07 Promising New Treatment for Pulmonary Hypertension
(King 5 News) -- Pulmonary hypertension is a serious, often fatal disease that causes the lung's delicate blood vessels to become smaller and disappear. Eventually, the heart has to work so hard that many patients die of heart failure. Now, Canadian doctors are using gene therapy to heal the damaged vessels. Junne Page is the first patient to get the therapy. She lived a healthy life until seven years ago.
12/5/07 A Children’s Book Every Adult Should Read
(Easier Lifestyle) United Kingdom -- Today sees the launch of a new children’s book that tackles the tricky subjects of severe illness and death through the eyes of a nine year old whose Nana is dying of the rare illness, Pulmonary Hypertension (PH) and a Stroke. In My Nana Is An Alien, acclaimed children’s TV scriptwriter & producer, Diane Whitley manages to convey, with humour and compassion all the fears and doubts that any child might have when things haven’t been explained to them properly leaving their imagination to run wild.
11/29/07 Parents Raising Lung Awareness
(The Powell River Peak) Powell River, BC, Canada -- A Powell River couple whose son died from a rare blood vessel disorder of the lung continues to raise awareness about the disease. Sheldon Smith died last May. He was 40 years old and had been living with pulmonary hypertension for five years.
11/29/07 Girl With PH Meets Cinderella through Make a Wish Foundation
To view video click "Search" tab and search for "make a wish."
11/27/07 Encysive's Hypertension Drug Available in Italy
(Houston Chronicle) -- Houston-based Encysive Pharmaceuticals announced its drug, Thelin, is now available in Italy in the form of a 100 mg tablet. Thelin was approved to treat pulmonary arterial hypertension by the European Union in August 2006.
11/27/07 Mum's Plea to Stop Others Suffering Like Oliver
(Gloucestershire Echo) United Kingdom -- Rummaging in his toy box for something new to play with, little Oliver Sherwood looks and acts like any other toddler. But the two-year-old, who has to take medication seven times a day, suffers from a rare lung disorder pulmonary hypertension - which means his life is totally different from other toddlers. Now his mum Sarah, 34, of Deer Park Road, Hucclecote, wants to help raise awareness of PH, which is often misdiagnosed as asthma.
11/21/07 Grace, tenacity and Thanksgiving: Former GHHS student receives new heart and lungs, rids rare disease
(The Penninsula Gateway) -- Carl Hicks, 54, wears his heart on his sleeve as he starts to unfold his first-born’s life with his wife, Mary Jan, in the den of their modest Gig Harbor home. The cliffhanger ending is playing out right before their eyes, as their daughter, 26-year-old Meaghan Hicks, sleeps soundly, just 10 feet away — complete with a new heart and pair of donated lungs.
Carl Hicks is a PHA board member.
11/21/07 Camillus Child Dealing With Pulmonary Hypertension
(WSYR-TV) Camillus, N.Y. -- When you're thankful for every day of your child's life you don't need a special holiday for gratitude. On Thanksgiving eve, one family wants you to know about a serious illness that needs more attention.
11/21/07 PH Victim: 'I thought I'd be dead within two years'
(The Vancouver Province) Canada -- Elizabeth McCall has been mistaken for a meter maid and a parcel courier. Unfortunately, she can't do either -- but not for a lack of skills. The 40-year-old woman's heart's just not in it, literally.
11/19/07 PHA Support Group Leader Gets 2 Awareness Month Proclamations!
Mid-South, Tenn. Support Group Leader Barbara Thompson got both the Mayor of the City of Memphis and the Mayor of Shelby County to sign proclamations to declare November 2007 as Pulmonary Hypertension Awareness Month. Says Thomson, "Wow, this was a cinch! I never expected this to be as easy as asking. I sent an email to each of our area's Mayor's offices."
11/16/07 Encouragement For Those Living With Primary Pulmonary Hypertension (PPH)
(American Chronicle) -- November is Pulmonary Hypertension Awareness month. This year marks the ten-year anniversary of a national initiative to create awareness for what once was an obscure and terminal illness. Today millions of dollars are committed to the search for a cure!
11/14/07 FDA Issues an Information for Healthcare Professionals Sheet for Revatio
Rockville, Md. --
Information for Healthcare Professionals
Sildenafil (marketed as Viagra and Revatio) Vardenafil (marketed as Levitra) Tadalafil (marketed as Cialis)
FDA SUMMARY [11/2007]: FDA has received reports of cases of sudden decreases or loss of hearing following the use of PDE5 inhibitors, Viagra, Levitra, and Cialis for the treatment of erectile dysfunction and Revatio for the treatment of pulmonary arterial hypertension.
11/14/07 Early Diagnosis Gives Pulmonary Arterial Hypertension Patients a Fighting Chance
(CNW Group) Vancouver, Canada -- The answer is Pulmonary Arterial Hypertension, also known as PAH; the question - which progressive, degenerative disease has a faster mortality timeline than some cancers? Yet, even though untreated PAH will claim the lives of between 40 to 55 per cent of patients within the first two years after diagnosis, patients continue to be diagnosed late.
11/14/07 Family Thanks Medics for Saving Baby
(Bradford Telegraph & Argus) United Kingdom -- A mum has paid tribute to the medical staff at two hospitals who worked around the clock to save her baby's life.
11/14/07 Survivor Thanks Nurses
(Gladwin County Record) To the Editor: I would like to thank all the staff at MidMichigan Medical Center-Gladwin and the Home Care nurses that took time out of their schedules to go to the pulmonary hypertension seminar that was recently held at MidMichigan Medical Center-Gladwin...
11/13/07 Rochester Team Recognized Nationally For Care And Support Of Patients With Pulmonary Hypertension
(Medical News TODAY) A unique effort to reach out to, educate and support patients in the Rochester area with pulmonary hypertension has attracted the attention of the national Pulmonary Hypertension Association (PHA) and led to a feature article in the association's newsletter.
11/13/07 Fund Raiser to be Held for Pulmonary Hypertension
(UNMC Today) Phenomenal Hope for a Cure will hold its second annual fundraising event to increase awareness of pulmonary hypertension on Nov. 17 at the DC Center, 11830 Stonegate Circle in Omaha. Read article | Learn more
11/12/07 EU Panel Backs Seven Orphan Drugs At Monthly Meeting
(Dow Jones) Zurich, Germany -- The European Union regulatory body Committee for Orphan Medicinal Products said it adopted 7 positive opinions recommending designation as orphan medicinal products to the European Commission. Methyl 4,6-diamino-2-[1-(2-fluorobenzyl)-1H-pyrazolo[3,4-b]pyridine-3-yl]-5- pyr imidinyl(methyl)carbamate, from Bayer HealthCare AG, for treatment of pulmonary arterial hypertension including treatment of chronic thromboembolic pulmonary hypertension. EMEA review began on 10 September 2007 with an active review time of 60 days.
11/11/07 Blood Pressure Disease Turns Stahl into an Advocate
(Crescent News) -- Theresa Stahl's recovery from a serious blood-pressure disease has been nothing short of remarkable. In about four years, the Defiance resident has progressed from barely being able to walk and even breathe to becoming an active advocate on information about her disease, pulmonary hypertension (PH). "I feel more energetic, and I am much more active," Stahl said.
November 2007 2008 Young Investigators Award Program for Pulmonary Vascular Disease Research
Actelion announced its continuing support for young researchers with the 2008 Entelligence Young Investigators Award Program, a mentored, one-year grant-supported program for up to $75,000 now in its third year. The deadline for Letters of Intent is December 31, 2007.
11/6/07 Lungs' Pressure Needn't Threaten Heart Transplant Survival
(EurekAlert.org) Heart surgeons at Johns Hopkins say people who need heart transplants can largely avoid transplant failure due to elevated blood pressure in their lungs with the help of proper drug treatment.
11/2/07 Teen’s Organ Wait Ends
(The Star) Petaling Jaya, Malaysia -- Siti Salmah Jasni's long wait for new lungs is over. And she will be getting a new heart too, because the lung disease has affected her heart. This would make Siti Salmah the first person in Malaysia to receive both lungs and heart simultaneously. Siti Salmah, who suffers from pulmonary hypertension and has been registered as an organ recipient since 2005.
11/1/07 United Therapeutics Finishes Pulmonary Drug Trial
(Baltimore Sun) Silver Spring biotech United Therapeutics said this morning it has completed a Phase III trial for Viveta, a drug it is developing to treat pulmonary arterial hypertension. The 12-week trial tested the medicine on 235 patients. The company said patients breathed better during walks after inhaling Viveta. About 160 patients are still being treated.
10/25/07 Pulmonary Hypertension Association Hopes to Raise Awareness
(Respiratory Report) -- By naming November Pulmonary Hypertension Awareness Month, the Pulmonary Hypertension Association (PHA) hopes to increase the number of correct diagnoses so patients can begin receiving the appropriate treatment. "Pulmonary hypertension can progress rapidly, so the earlier the diagnosis, the better the prognosis. Raising awareness in the medical community increases the chances of a correct diagnosis in a timely manner," said Dayle Kern, an advocacy and awareness associate for the association. To this effort, the PHA hopes to enlist the help of RTs and other respiratory professionals.
October 2007 Chat Host Lora Mausling on TV! View clip | Read article
Join her new daytime online support group chat on Mondays 2pm EST (11pm PST) | View Lora's Journey story
10/23/07 Tracleer Shows Clinical Benefit as Combination Therapy with Sildenafil for Pulmonary Arterial Hypertension
Actelion Pharmaceuticals US, Inc. announced positive results from two trials demonstrating that Tracleer(R) (bosentan) may be safe and effective as a combination therapy for the treatment of pulmonary arterial hypertension (PAH). Data from both studies suggest that Tracleer, when given in combination with sildenafil, is well-tolerated and improves hemodynamics in PAH patients. The data were presented at CHEST 2007, the annual meeting of the of Chest Physicians, taking place in Chicago.
10/23/07 Gilead Announces New Letairis(TM) (ambrisentan) Data for the Treatment of Patients with Pulmonary Arterial Hypertension (WHO Group 1)
Gilead Sciences, Inc. announced the presentation of new data from the Phase III ARIES studies evaluating ambrisentan in patients with pulmonary arterial hypertension (PAH) at CHEST 2007, the annual meeting of the American College of Chest Physicians, taking place in Chicago, Illinois, October 20-25. Ambrisentan is an ETA-selective endothelin receptor antagonist (ERA) that was recently granted accelerated approval under the tradename Letairis(TM) by the U.S. Food and Drug Administration (FDA).
10/22/07 Toray and Astellas Pharma Announce of the Acquisition of Marketing Approval for the Pulmonary Arterial Hypertension Agent Careload(R) LA Tablets 60mu/g in Japan
(Tokyo, Japan) Toray Industries Inc. and Astellas Pharma Inc. announced that Toray has obtained marketing approval for its oral PGI2 derivative prolonged release, Careload(R) LA Tablets 60mu/g (generic name: beraprost sodium), to be indicated for pulmonary arterial hypertension (PAH) on October 19, 2007. Careload will be listed in the NHI drug price list and launched in December 2007.
10/21/07 Canadian Cardiology Reaches New Peaks with Mountaineering Medicine
(Quebec City, Canada) Two members of the expedition developed pulmonary hypertension and one had to take medication to improve his clinical status. "We proved that some patients present with right diastolic heart failure - a relaxation of the heart that might become abnormal. Although we measured BNP at the time, we haven't finished comparing it to heart function, "said Dr. Garceau. "We think that the diastolic dysfunction we measured in the mountains in the right ventricle might increase the BNPs."
10/19/07 Hearing Loss Warning on Impotence Drugs
Viagra and other impotence drugs are about to bear new warnings that users may experience sudden hearing loss. It's not clear that the drugs truly trigger hearing loss, but the Food and Drug Administration decided Thursday to add a warning about the possible risk after counting 29 reports of the problem since 1996 among users of this family of medicines. The impotence drugs Viagra, Cialis and Levitra will bear the warnings. So will Revatio, a drug for pulmonary hypertension, which contains the same ingredient as Viagra.
10/19/07 Stem Cell Research Could Cure Pulmonary Hypertension
An innovative approach to treating pulmonary hypertension is making waves in the medical world. Doctors are combining gene and cell therapy to treat the condition. It's the first time that combined gene and cell therapy has ever been used to treat any heart or blood vessel disease.
10/18/07 Breakthrough For Fatal Lung Disease
(Toronto, Canada) Given the dim prognosis, Dr. Kutryk is excited about a new therapy that could save lives. "We're hoping that we can slow down the progression, halt the progression and, in fact, we feel confident that we may be able to reverse the disease in most incidents," Dr. Kutryk said. In the first ever trial of a gene-cell therapy for any cardiovascular disease, doctors take specialized cells from the patient's blood and grow them in the lab. The cells are altered with a gene that promotes healing in the vessels and are injected back into the patient.
10/18/07 Elusive Disease is Deadly Serious Health Risk
David Williams drags a 50-foot tube with him everywhere he goes. The clear, plastic tube carries oxygen from a tank to a nasal cannula, which fits into the openings of David’s nose.
10/17/07 Poor Can Apply to Medical Fund
(Kuala Lumpur, Malaysia) Deserving patients seeking treatment can get financial help from a Health Ministry fund, with approvals taking between a week and two months. The payment is made directly to the hospital or supplier of medical devices, said director-general of health Tan Sri Dr Ismail Merican. Patients who qualify for the assistance include those suffering from cancer, kidney and heart diseases, pulmonary hypertension, viral hepatitis, Parkinson's and HIV/AIDS.
9/24/07 Encysive Taking Next Step with Thelin
Encysive Pharmaceuticals Inc. is moving ahead with the Phase III study of its pulmonary arterial hypertension drug, Thelin. Earlier this month, the Houston biopharmaceutical company said it had completed patient enrollment for its second phase of trials for Thelin.
9/18/07 A new take on life -- Rossville woman looks to live with pulmonary arterial hypertension
When Cindy Haan started feeling constantly exhausted and easily out of breath early last year, she assumed it was related to her busy schedule as a working mother of three.
9/16/07 Unique residence a sanctuary to those waiting for organs
(Montreal, Canada) Snagging his oxygen tube in the doorway, Louis Boutin gasps as he bends slightly to flick it free, talking eagerly about the prospect of a new set of lungs.
9/14/07 Bosentan for Inoperable Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and Postpulmonary Endarterectomy Pulmonary Hypertension: Presented at ESC
(Vienna, Austria) The dual endothelin receptor antagonist bosentan provides significantly improved haemodynamics and decreased pulmonary vascular resistance (PVR) in patients with inoperable chronic thromboembolic pulmonary hypertension (CTEPH) and with postpulmonary endarterectomy (PEA) pulmonary hypertension (PH), according to a study presented here at the European Society of Cardiology (ESC) Congress.
9/8/07 Jean Lykes Grace, joyful volunteer who gave generously, she used her good fortune to help others
Jean Lykes Grace, a descendant of a founder of the Lykes Brothers shipping, ranching and real estate empire who transformed her good fortune into compassion for others, died last week. She was 63.
9/7/07 Richter Finds "Cure" in California
For a long time Leigh Ann Richter wasn't sure what was wrong with her. Richter had been in and out of doctors' offices for the past 17 years, but doctors could not figure out what was causing her severe shortness of breath and occasional chest pains. She was diagnosed with a variety of conditions ranging from asthma to bronchitis, but the medications did not help her to improve.
09/06/07 Sildenafil Produces Significant Haemodynamic Response in Patients With Pulmonary Arterial Hypertension Treated With Bosentan: Presented at ESC
A single oral dose of sildenafil has beneficial haemodynamic effects when added to bosentan in patients with PAH pulmonary arterial hypertension (PAH), according to study results presented here at the European Society of Cardiology (ESC) Congress.
09/05/07 Bosentan Improves Haemodynamics and Delays Time to Clinical Worsening in Patients With Mildly Symptomatic Pulmonary Arterial Hypertension: Presented at ESC
The dual endothelin receptor antagonist bosentan is well tolerated and can delay disease progression among patients with mildly symptomatic pulmonary arterial hypertension (PAH), researchers reported here at the European Society of Cardiology (ESC) Congress.
09/05/07 ESC: Bosentan (Tracleer) Slows Progression of Pulmonary Arterial Hypertension
For patients in the early stages of pulmonary arterial hypertension, the use of bosentan (Tracleer) appears to slow the progressive worsening of symptoms, researchers said here.
09/05/07 Lung Disease, Viagra and Advice From a Caregiver
In a clinical trial, Viagra (which dilates blood vessels) is being assessed for possibly increasing exercise tolerance and decreasing shortness of breath in Idiopathic Pulmonary Fibrosis (IPF) patients. Also, Viagra can be used to treat pulmonary hypertension, which can result from IPF.
09/04/07 Aradigm and Lung Rx Agree to Develop AERx Essence® Technology for Use in Pulmonary Arterial Hypertension
Aradigm Corporation announced it entered into an Exclusive License, Development and Commercialization Agreement with Lung Rx, Inc., a wholly-owned subsidiary of United Therapeutics Corporation , for inhaled treprostinil using Aradigm’s AERx Essence® technology for the treatment of pulmonary arterial hypertension (PAH) and other potential therapeutic indications. AERx Essence inhalation delivery system is a palm-size, easy to use inhalation device that is expected to deliver medication to the patient in 2 to 4 breaths.
9/2/07 New Data Backs Wider Use of Flagship Actelion Drug
Actelion's top-selling drug Tracleer can help less sick patients with pulmonary arterial hypertension (PAH), as well as those with advanced disease, researchers said on Sunday.
8/31/07 8,000 Strong: A one-man crusade becomes an army in the fight against PH
Membership in PHA is a way for patients and their loved ones to stand collectively with so many in the fight for our cause. Troy Williams is one member who stands tall in the fight against PH. His goal is to turn the tragedy of losing his wife, Sharon, into a triumph by helping to win the fight against PH and honoring those who have lost their battle.
8/31/07 PHA Australia Holds Successful Trivia Night & Auction
PHA Australia held a very successful trivia night and auction. Thanks to advertising efforts prior to the event, they reached some patients who had not previously heard of them. They started the night off by talking about pulmonary hypertension and informing those who had come but had not heard of the disease. The evening was a great success -- they raised $4500 AUD.
2007 Susie's Journey to Stay Alive
(UAB video) In 2000, Susie Dodson was diagnosed with a rare, and often fatal, heart-lung disorder, a type of pulmonary hypertension called pulmonary arterial hypertension (PAH).
8/29/07 Help is Available for Pulmonary Hypertension
Julia felt like a fish out of water. Whether she was climbing the stairs, talking on the phone or just sitting at her desk, she was always gasping for air. At first she attributed her breathlessness to nerves; she had a hectic work schedule with little time to relax or exercise.
When the fatigue and shortness of breath became progressively worse, she saw her doctor who, after a physical examination and tests, referred her to a specialist for treatment of pulmonary hypertension.
8/26/07 A Crisis of Great Magnitude
A number of studies have now demonstrated links between obesity and a host of medical conditions, including depression, gastroesophageal reflux, sleep apnea, gout, osteoarthritis, gallbladder disease, kidney disease, diabetes, high blood pressure, high cholesterol, coronary artery disease, heart failure, atrial fibrillation, stroke, pulmonary hypertension, blood clots, dementia and several cancers (endometrial, breast, pancreas, kidney, esophageal, multiple myeloma, lymphoma, prostate, liver and colon).
8/25/07 A Life in Delicate Balance: Faith, family and friends help one woman to fight a rare lung disorder
Exhaustion goes with the territory when you have two children under the age of 2. But by the time Jocelyn Barker’s second baby was 6 months old she knew her extreme tiredness wasn’t normal.
8/24/07 Dennis Township Girl Makes Progress in Battle with Rare Ailment
Julia Vandenburg, of Dennis Township, is a very happy 12-year-old. She isn't that thrilled that school is starting soon but is happy that she will be able to stop carrying two backpacks to school each day. Besides her bookbag, Julia had to wear a small backpack that contained the medicine she needed at all times to battle primary pulmonary hypertension, or PPH, an extremely rare and life-threatening disease.
8/24/07 Area Songwriters to Play Sonny's as Part of Benefit Effort
Upstate songwriters and musicians are using their talents to help a good cause.
"I had a friend who passed away from pulmonary hypertension, and she had been very active with starting a South Carolina chapter and an annual walk, and she always wanted to get the music community involved," said Brandy Lindsey of the musical group Brandy Lindsey and the Punch.
8/23/07 Safety Information Regarding Thelin (Sitaxsentan Sodium) and the Occurrence of Liver Toxicity, Risks to the Foetus, and Important Drug-Drug Interactions
Encysive Pharmaceuticals Inc., in consultation with Health Canada, has sent a letter to health care professionals to highlight important safety information for the safe and appropriate prescribing and use of Thelin™ (sitaxsentan sodium).
8/23/07 Lung Transplantation in the U.S.
The United Network for Organ Sharing reports more than 1,400 lung transplants were performed in the U.S. last year. A transplant is needed for patients with irreversible lung damage, limiting the ability of the lungs to take in oxygen and release carbon dioxide.
8/23/07 Artificial Lung Saves Lives Until Transplant Arrives
To keep patients alive long enough to receive the lung transplant they need, some researchers are now turning to an innovative device called the Novalung. The Novalung is a new external artificial lung that uses the heart's pumping ability to keep it working.
8/22/07 The Fight to Cure Pulmonary Hypertension (PH) by Mother of 3 Year Old Victim of the Disease
Pulmonary Hypertension (PH) took her life at the tenant age of 3 ½, yet the memory of Emma Cusatis and her fight to cure PH lives on in each pair of shoes painted and sold by her mom Jane Perillo and caregiver Jenell King. Snanimals was formed through Emma’s love of animals (and shoes!) and now helps to fight PH and find a cure by donating a percentage of sales to the Pulmonary Hypertension Association in Emma’s memory.
8/21/07 PNH Patients Treated with Soliris(TM) Experienced Dramatic Reduction in Blood Clots During Clinical Trials
Soliris, developed by Alexion Pharmaceuticals, Inc., is the first therapy approved for paroxysmal nocturnal hemoglobinuria (PNH), a rare, debilitating and life-threatening blood disorder defined by the destruction of red blood cells, or hemolysis. In patients with PNH, hemolysis can cause severe anemia, disabling fatigue, recurrent pain, shortness of breath, pulmonary hypertension, intermittent episodes of dark colored urine (hemoglobinuria), kidney disease, impaired quality of life and thromboses.
8/20/07 Hope for Injured Lungs
Yen Tran is lucky to be alive. Last December she was diagnosed with pulmonary hypertension which constricts vessels that lead to the lungs, making it nearly impossible for the heart to get oxygen-rich blood to the lungs. Yen was in the ICU waiting for a new lung when her heart stopped. Doctors kept Yen alive with chest compressions and this new artificial lung called the Novalung.
She was the first person in North America to get it.
8/20/07 Houston Support Group Gears Up For 2008 Conference
Debbie came to the meeting specifically to talk about PHA's International Conference, which will take place in downtown Houston in June of 2008, "I spoke about the group's special role as hosts and ambassadors for our conference. They will be the core of volunteers locally and will really be the difference in making this event a huge success -- and since it's in Texas, I'm sure they will do it big!"
8/18/07 Storms Leave 'Disaster Area'
Melva White is contending with a life-threatening situation. The Hammond resident has an incision near her heart for a tube that feeds chilled medicine into her lungs for pulmonary hypertension. She can't freeze the ice she needs without power. She has another machine by her bed that feeds her oxygen through a mask because without it, she said, she could suffocate. She needs electricity for this too.
8/17/07 Checkup on Treatments for Pulmonary Arterial Hypertension
(Wall Street Journal Health Blog and video) There’s more hope for patients with a rare and potentially lethal condition called pulmonary arterial hypertension.
8/17/07 Inhaled Nitric Oxide Safe For Premature Infants' Lungs
A nationwide study provides evidence that inhaled nitric oxide is safe and effective for the prevention of the most common type of long-term lung disease of very premature infants.
8/17/07 Mike McCarthy (Mack) Fills in Gaps in Schedule for Online Support Group Chats
New Chats Added
Thursdays & Saturdays @ 5pm PST
Mack took the initiative to investigate chats on Thursdays and Saturdays and now we have chats every day of the week! He says the introductory Saturday chat last weekend was awesome with a few from Ariz., Calif., N.Y., Utah and Ohio. Read article
8/14/07 Family Man, Sports Lover 'Never Slowed Down'
Citrano was diagnosed 11 years ago with primary pulmonary hypertension (PPH), a rare lung disorder. He was cautioned to take it easy. "But he never slowed down," said his son. "He was always gardening or working on something." Though he got winded easily, "he continued to work hard and stay busy."
8/12/07 Treatment Sans Surgery
(India) Non-surgical procedures reduce the need for open-heart surgery in children.
8/10/07 California PH Forum Features Education, Research and PH Community Interaction
In late June an enthusiastic group of 225 patients, family, caregivers, doctors, nurses and pharmaceutical industry representatives met for an educational conference on Pulmonary Arterial Hypertension.
8/8/07 Granting Elizabeth’s Wish
Even as a child, Elizabeth Tune of Red Oak couldn’t play like the other kids — within a few minutes of riding a bike or participating in children’s games, Tune would be gasping for breath.
8/8/07 Hiking Boots: The Newest Weapon for PH Doctors
Two extraordinary doctors on our scientific leadership council, Doctors Ray Benza and Mike McGoon, are also becoming leaders in special events. While they work year round to help their patients cope with this devastating disease, they are both taking to their feet as well to find a cure for pulmonary hypertension.
8/7/07 EPIX Pharmaceuticals Announces Positive Results from Phase 2a Clinical Trial of First-in-Class 5-HT2B Antagonist in Patients with Pulmonary Hypertension Associated with Chronic Obstructive Pulmonary Disease
Highlights:
- PRX-08066 resulted in statistically significant reductions in systolic pulmonary artery pressure (SPAP); responder (≥ 4mmHg drop in SPAP) rates were 45% on 400 mg once-daily vs. 14% on placebo (p=0.043)
- Well-tolerated, with potential for co-administration with other therapies
- First-in-class 5-HT2B antagonist in PH associated with COPD
8/6/07 New USA Clinic Can Be a Lifesaver
Before the USA pulmonary hypertension clinic opened late last year, southwest Alabama PH patients wishing to participate in clinical trials or be treated by a PH-specific facility had to travel to Birmingham, Atlanta, Jacksonville, Fla., or Nashville, Tenn.
8/3/07 Summer 2007 -- The Season for PH Awareness Raising at Medical Conferences
This summer the Pulmonary Hypertension Association was busy raising PH awareness at important medical conferences -- in the U.S. at the American Association of Critical-Care Nurses (AACN), American Thoracic Society (ATS) and Scleroderma Foundation conferences, in China at PHA and PHA China sponsored Medical Education Sessions and a patient meeting, and in Taiwan at meetings with group representatives.
8/2/07 ImageRight Concludes Successful User Group Conference
Each year, ImageRight contributes $1,000 to the Pulmonary Hypertension Association (PHA) for each new software client signed in honor of Kerry Bardorf, a former ImageRight employee who died in 2005 from pulmonary hypertension (PH). At this year's user group conference, over $12,000 was raised by ImageRight and their clients to support PHA's efforts and research toward finding treatments or a cure for this debilitating disease.
7/30/07 Living Lung Transplants Found Life-Saving Option in PAH
(Japan) When medical therapy flags for pulmonary artery hypertension (PAH), lung transplants from related living donors can be life-saving, researchers here said.
7/30/07 PHA Spreads PH Awareness at Scleroderma Foundation Conference
PHA attended the Scleroderma Foundation Conference in Philadelphia, Penn. last weekend. The conference attracted almost 450 attendees. PHA had a popular booth where we distributed educational materials and spoke with Scleroderma Support Group Leaders about the upcoming PH Medical Education Sessions, where the Scleroderma Foundation is partnering with PHA to present info about scleroderma and PH at the patient sessions. People requested so much info from our booth we didn't have any materials left at the end of the conference!
7/27/07 The Other High Blood Pressure
When Janice Wade tells people she has pulmonary arterial hypertension, she usually gets one of two answers: “What is that?” or “I’ve had high blood pressure for years.” In either case, she shares her story — because it’s a disease she’s come to understand too well.
7/27/07 PH
Community Highlight:
Colleen Schnell Fills Gap for Daytime Online Support Group Chat on Tuesdays
New Online Support Group Chat Added to Schedule!
When one of the online support
group chats brought up the idea of having a daytime chat, Colleen Schnell thought it was a great idea. So did the online community when she put feelers out about interest on the message boards. Tuesday Colleen hosted her first daytime chat at 1pm EST, which was joined by about 14 participants and lasted over 3 hours. What a welcome! You can join Colleen and other PHers on Tuesdays at 1pm EST (10am PST) on PHA's chat page.
7/26/07 Unique Surveillance Programme Confirms The Clinical Safety Of Bosentan In Pulmonary Arterial Hypertension
The safety profile of bosentan (Tracleer®), an endothelin receptor antagonist approved for the treatment of pulmonary arterial hypertension (PAH), has been confirmed in a unique large-scale pan-European surveillance programme, according to a study undertaken by Marc Humbert (Antoine Beclere Hospital, Clamart, France) and his colleagues.
7/26/07
Disabled on Airlines Gain Rights
(European Union) A European law that will improve air travel for disabled and older people has come into effect. Under the new rules, airlines and holiday companies will no longer be able to refuse to fly people because of their disability.
7/25/07 PH Community Highlight:
Charlotte McCabe Organizes Congressional District Visits with Her Support Group
After giving a very successful presentation on advocacy to her support group (Puyallup, Wash.), Charlotte McCabe scheduled a district visit for her group to meet with Representative Adam Smith's Health Legislative Assistant, Deborah Entenman, over the August recess. Charlotte (pictured right with her dog Buddy) is working on scheduling visits with the local area's other legislators in Congress as well.
Interested in visiting your members of Congress this August recess? Learn how
7/21/07 Illness That Put Boy, 12, in Spotlight Ends His Life
By the age of 12, Dylan Bell had met former prime minister Paul Martin, received letters from well-wishers from around the world and appeared in a television commercial. But the disease that put Dylan in the spotlight also claimed his life. He died on July 14, just a day after his birthday.
7/20/07 First Giving hits $10,000 Mark: PHA Board Chair and many others fundraising for the cause!
PHA’s Chair of the Board and former Director of the Pulmonary Hypertension Clinic of the Mayo Clinic in Rochester, Minnesota, Dr. Michael McGoon is a very busy man to say the least. However, with PHA’s First Giving website, www.FirstGiving.com/PHAssociation, he quickly and easily registered to participate in the Minnesota Fun Walk for a Cure. He and his wife, Bonnie, created a fundraising page to collect pledges and became PHA’s top online fundraiser within a week. Another fun walk participant, PH patient Robin Hoff, raised $1000 in only 2 days!
7/13/07 Encysive to Request Thelin Dispute Hearing
The clash between U.S. firm Encysive Pharmaceuticals and the Food and Drug Administration on Thelin's efficacy is headed for formal dispute resolution. The company said it anticipates filing a request with the agency for formal dispute resolution "in the near term" on the issue of whether Encysive submitted sufficient data with the FDA to prove its potential drug Thelin is effective for treating pulmonary arterial hypertension.
7/13/07 Scleroderma Outlook Improves As Survival Increases
Individuals with scleroderma are living significantly longer, compared with 30 years ago, and the physicians who treat this rare disease of connective tissue hope the newer drugs now on the market may extend lives even further.
7/12/07 Network Model Predicts Risk Of Death In Sickle Cell Disease
The reliability of the model was supported by analysis of two independent patient groups. In group one, the severity score was related to disease severity based on the opinion of expert clinicians. In the other group, the severity score was related to the presence and severity of pulmonary hypertension and the risk of death.
7/9/07 Viagra Boosts Heart Performance and May Save Lives
Michelakis noted that this might be the first example of a drug that can improve the function of the right ventricle (which is diseased in pulmonary hypertension), without affecting the left ventricle (which is normal in pulmonary hypertension).
7/2/07 New Approach to Pulmonary Hypertension Shows Promise
Researchers at the University of Alberta have identified a "central command system" for pulmonary hypertension. "We believe this finding opens the door to a new strategy and the development of a new stream of drugs to treat this complex and lethal disease," said Dr. Evangelos Michelakis, director of the U of A pulmonary hypertension program and senior author of the study, which appears in the Proceedings of the National Academy of Sciences.
6/25/07 Encysive Ends Key Trial of PH Drug Thelin
Encysive will discontinue its ongoing U.S. study of Thelin for PAH. Instead, the company plans to focus on the sales and marketing of Thelin in Europe, Canada and Australia, where the drug has been approved.
6/25/07 A Mother's Race for a Cure: One entrepreneur plunged into biotech to save her daughter's life.
The PH journey of United Therapeutics President Martine Rothblatt, who launched the company to find a cure for her daughter.
6/24/07 Hope for Lung Patients
(United Kingdom) Scientists have created the first ever prototype of an artificial lung that mimics the natural functioning of the body.
6/18/07 FDA Approves Ambrisentan For Rare High Blood Pressure Condition In Lungs
The US Food and Drug Administration has approved Letairis (chemical name ambrisentan) for treating a rare, life-threatening high blood pressure condition known as pulmonary arterial hypertension (PAH) that affects the arteries of the lungs. Letairis is an endothelin receptor antagonist (ERA).
6/18/07 Thelin Received Third "Approvable Letter"
Encysive said that the Food and Drug Administration had issued its third approvable letter for the drug. The FDA said Encysive's development program "did not demonstrate the evidence of effectiveness needed for approval." Encysive said the FDA "encouraged the company to conduct an additional study" documenting that the drug improves exercise tolerance.
6/13/07 Ill Woman Keeps Leaving Grim Prognosis in Her Dust
Eight years ago, doctors in Seattle told Anderson that her life was also rushing -- toward an abrupt end. She had been diagnosed with pulmonary hypertension, an incurable disease that sends blood pressure in the arteries of the lungs to incredibly high levels. They said she'd be dead in 18 months. She's 49 now.
6/11/07 Bosentan (Tracleer) Receives EU Approval for Reduction of Number of New Digital Ulcerations in Systemic Sclerosis Patients
Actelion Ltd announced that the European Commission has granted marketing approval for Tracleer(r) for the reduction of the number of new digital ulcers in patients with systemic sclerosis and ongoing digital ulcer disease.
As vasculopathy is a pivotal feature of many of the complications of systemic sclerosis, patients suffering from the condition are at high risk to develop digital ulcerations and pulmonary arterial hypertension.
6/4/07 Sylvia Earley does Dublin Mini-Marathon
Read this interview with Sylvia Early, who ran the Dublin Mini-Marathon for PH.
6/4/07 BENEFiT Study Shows Tracleer (Bosentan) Improves Haemodynamics in CTEPH Patients Refused Surgery
Patients suffering from chronic thromboembolic pulmonary hypertension (CTEPH) who miss out on potentially curative surgery may respond to medical treatment with the dual endothelin receptor antagonist bosentan (Tracleer) according to results of BENEFiT, a multicentre phase III trial presented at this year’s American Thoracic Society meeting. To date there has been no approved medical therapy for the condition.
May 2007 Online Community PH Patient from Kansas Visits PHA
Jean Robart, a PH patient from Kansas who is a member of the PHAcommunity listserv, visited PHA's Silver Spring offices in May while she was on vacation in the Washington, D.C. area.
5/30/07 UPDATE 1-Encysive gets Canadian Approval for Hypertension Drug
(Canada) Encysive Pharmaceuticals Inc. said its hypertension drug Thelin was approved by Canadian health regulators.
5/26/07 Apnea One of Most Common Sleep Disorders
While sleep comes natural to most people, there are a few who find themselves tossing and turning all throughout the night. There are many causes of not being able to sleep and one of the top causes is a condition called sleep apnea. Sleep apnea occurs when a person stops breathing for 10 seconds or longer on a regular basis. There are three levels of sleep apnea including mild, moderate and severe.
5/25/07 Long-term Use of Ambrisentan is Safe and Effective for Patients with Pulmonary Arterial Hypertension: Presented at ATS
Long-term use of the vasodilator drug ambrisentan appears to be safe and effective for the treatment of pulmonary arterial hypertension, researchers reported at the American Thoracic Society 2007 International Conference (ATS).
5/24/07 Research May Yield Improved Treatment for Diseased Lungs
A multi-institutional team of engineers, scientists and clinicians from the University of Wisconsin-Madison will study large-artery biomechanics that could play a role in heart failure in patients with pulmonary arterial hypertension.
5/23/07 APA: SSRIs in Pregnancy Not Associated With Cardiac or Pulmonary Problems
In utero exposure to selective serotonin reuptake inhibitors was not significantly associated with the risk for cardiac malformations or persistent pulmonary hypertension.
5/22/07 Pulmonary Hypertension Association Names Recipients of 2007 Award of Excellence in Pulmonary Arterial Hypertension (PAH) Care
The Pulmonary Hypertension Association (PHA) and Actelion Pharmaceuticals US, Inc. announced John Newman, MD, and James Loyd, MD, both from Vanderbilt University, as the recipients of the inaugural PHA Award of Excellence in pulmonary arterial hypertension (PAH) Care. The grant, in the amount of $50,000, will go to Vanderbilt University to support continued excellence in care for patients with PAH. The award, supported by Actelion, was presented at the American Thoracic Society (ATS) International Conference in San Francisco.
5/21/07 Gilead Announces Presentation of Long-Term Data for Ambrisentan, a Potential Treatment for Patients With Pulmonary Arterial Hypertension
Gilead Sciences, Inc. announced results of two long-term studies evaluating ambrisentan, an investigational endothelin receptor antagonist (ERA) for the treatment of patients with pulmonary arterial hypertension (PAH).
5/21/07 Mum's Quest After Tragedy
(United Kingdom) When mum Mandy Curry lost her two-year-old son to a devastating lung condition, she became determined to help other parents in her position.
5/18/07 United Therapeutics Presents PHA with First Installment for $1 Million Endowment
United Therapeutics presented PHA with the first installment on a $1,000,000 endowment gift to establish PHA's new Support Group Leadership Training Institute.
5/18/07 Fundraiser Aims to Help Boy Attend School
Christian Reed turns seven today, and he wants to go to school. But he can’t because he doesn’t have enough oxygen tanks. A Saturday fundraiser will help raise money so he can go back to school.
5/17/07 UPMC Performs First Beating Heart Transplant
An investigational device called the "organ care system" is being called a breakthrough in heart transplantation by surgeons at the University of Pittsburgh.
5/15/07 First Monday Night PHA Chat a Huge Success
The inaugural Monday night chat last night was great. At one time there were 15 folks chatting at the same time, and we had a few who left then a few more joined in, so I would say a total of 18 or 19 participated in the chat. There were people on the chat from Ariz., Calif., Conn., Fla., Mich., N.Y., Ohio, Ore., Pa., S.C. and Va.
Read Merle Reeseman's full report
5/13/07 Connie-a-thon Teaches Kids About Community Service
The event was founded in 1998 to raise money for Connie Schweitzer, who had been diagnosed with primary pulmonary hypertension. She needed a double-lung and heart transplant, but didn’t receive it in time. She died in June 2000.
5/9/07 Lungs Have Their Own Blood Pressure
The lungs have their own blood pressure, only about one-fifth of what the body's blood pressure is. They can't tolerate pressure much higher than that. Lung blood pressure can rise just as body blood pressure does, and most often it rises independently of body blood pressure. The disorder is called pulmonary hypertension.
5/3/07 Seneca Valley Senior Fills School Gallery with Emotion of Transplant
Art student Dave Rocco's installation piece, now on display at Seneca Valley Intermediate High-School's BIG Gallery, exhibits what he felt after undergoing a double lung and heart transplant in September at UPMC Presbyterian Hospital in Oakland.
April 2007 Cure PH Golf Tournament Exceeds Goal
The 9th Annual Cure PH Golf Tournament recently raised more than $120,000 to help find a cure for pulmonary hypertension (PH).
4/27/07 How Businessman Beat Rare Disease
(United Kingdom) Ray Bradbury, 53, of Global Group International, Darwen, is one of the few people to lead a fit and active life after contracting the life-threatening clotting condition pulmonary hypertension.
4/25/07 Stacie's Story is Featured on Film to Help Others
(United Kingdom) A father and daughter have made a film to increase awareness of the little known condition pulmonary hypertension.
4/24/07 12 PH Families Join Forces To Raise Awareness of Pulmonary Hypertension
(United Kingdom) New research by PHA-UK (Pulmonary Hypertension Association UK), the patient charity for Pulmonary Hypertension (PH) sufferers, released to coincide with PH Awareness week (23rd – 28th of April 2007), indicates that 52% of PH patient’s have had to endure a wait of up to two years, with 41% having to see up to four different doctors, before receiving a correct diagnosis and access to the specialist care and treatments they need to control their condition. During PH Awareness Week, PHA-UK and its members are conducting a number of initiatives to try and boost awareness of the condition. A series of short films has been produced in conjunction with 12 PH patients across the UK by respected TV documentary maker Alan Howard and Producer Paul Pennington to highlight the impact that PH has on their lives.
View these 12 UK patient videos
Read the Memorandum of Understanding (MOU) between PHA and PHA-UK
4/24/07 Cardiovascular Malformations in Omani Arab Children with Down's Syndrome
Conclusion: The prevalence of cardiovascular malformations is high, at 57%, in our studied population of Arab children. Overall, 92% of the malformations are defects which are characterized by a left-to-right shunt, and the potential for pulmonary hypertension. These findings underscore the need for early detection and prompt, appropriate care. To achieve this, if feasible, all babies born with Down's syndrome should have echocardiography in the first month of life.
4/23/07 New Company Handpaints Children's Shoes And Donates % To Charity In Memory Of Daughter
Pulmonary Hypertension (PH) took her life at the tenant age of 3 ½, yet the memory of Emma Cusatis and her fight to cure PH lives on in each pair of shoes painted and sold by her mom Jane Perillo. Snanimals was formed through Emma’s love of animals (and shoes!) and now helps to fight PH and find a cure by donating a percentage of sales to the Pulmonary Hypertension Association in Emma’s memory.
Visit PHA's Related Products to purchase Snanimals
4/21/07 Viagra Has Given Me Chance to Stay Alive
(United Kingdom) Inside his spotless Corstorphine bungalow, 54-year-old Grant Crow answers the phone with a gentle voice as another call comes through from a worried patient who has just been diagnosed with the same life-threatening illness he has - pulmonary hypertension (PH).
4/19/07 Altitude and the Heart: A Cardiologist Speaks About Life in the Mountains
Something residents should be aware of is that they could suddenly develop secondary pulmonary hypertension, an elevation of pressure inside the lungs due to altitude. Someone who has lived here 30 years could develop this condition and have to move, Gaul said.
4/19/07 Case Study at Massachusetts General Hospital: A 56-Year-Old Woman with Renal Failure after Heart–Lung Transplantation
A 56-year-old woman with a history of primary pulmonary hypertension and heart and lung transplantation was admitted to the hospital because of renal failure.
4/18/07 Chesapeake Hosted Bands for Pulmonary Hypertension
Saturday night, the Chesapeake Rooms were full of people rocking double time, listening to local rock bands while swaying back and forth in rocking chairs. The event was the "Rock-a-Thon," sponsored by co-ed service fraternity Alpha Phi Omega and community service group Circle K. The event was held in remembrance of a former member of APO, Elizabeth Juhasz, who died of pulmonary hypertension last year.
4/17/07 Stamford, Conn. PHA Support Groups Holds Their Inaugural Meeting
Read Support Group Leader Neeta Pai's story of how she started the group and how the first meeting went as well as view pictures from the meeting
April 2007 PH Resource Network Members Publish Article in "Critical Care Nurse"
Allison Widlitz, Susie McDevitt, Ginger Ward and Abby Kirchman recently published “Practical Aspects of Continuous Intravenous Treprostinil Therapy” in the April 2007 issue of Critical Care Nurse.
Read more about the PH Resource Network
4/15/07 Double-lung Transplant Teen Celebrates Birthday
(Australia) Aimee Blakiston will celebrate her 18th birthday in hospital today, thankful for the double-lung transplant that saved her life in February.
4/15/07 That Snore!
(Malaysia)
Snoring can be indicative of a more serious problem.
4/15/07 Don't Leave Depression Untreated During Pregnancy
Pros and Cons: There are also studies — and these are the ones your patients are likely to hear about — that show antidepressants can be harmful to the fetus. A small study found babies of women who took SSRIs in the second half of their pregnancy were six times more likely to have a serious breathing problem called persistent pulmonary hypertension.
4/9/07 Heartfelt Delivery
Doctors at University Hospital help women with heart defects through difficult pregnancies.
4/2/07 Honouring Joanita's Memory
United Kingdom: John Masey is running the London Marathon to help raise money for, and create awareness of, the Royal Free Hospital's pulmonary hypertension unit, which treated Joanita Gomez, the wife of his friend Oscer.
3/29/07 European Commission grants Orphan Drug Status to Elafin for the treatment of PAH
After recommendation by the European Medicines Agency (EMEA), Proteo Biotech AG has received orphan drug status from the European Commission for its drug candidate Elafin for the treatment of pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension.
3/27/07 United Therapeutics and Mochida Pharmaceutical Sign Remodulin Distribution Agreement for Japan
United Therapeutics Corporation and Mochida Pharmaceutical Co., Ltd. announced today that the companies have signed an agreement for the exclusive distribution in Japan of Remodulin(R) (treprostinil sodium) Injection administered subcutaneously or intravenously for the treatment of patients with pulmonary arterial hypertension.
3/26/07 Bosentan (Tracleer) Receives Positive EU Opinion for Reduction of New Digital Ulcerations in Systemic Sclerosis Patients
Actelion Ltd announced that the Committee for Medicinal Products for Human Use (CHMP), the scientific committee of the European Medicines Agency (EMEA), has issued a positive opinion on bosentan (Tracleer®) to extend the use of this dual endothelin receptor antagonist beyond Pulmonary Arterial Hypertension.
March 2007 Who's Who at ATS: Judy Simpson: Fighting for a Cure (scroll to page 4)
It wasn't until her younger sister, Pat Paton, was diagnosed with pulmonary arterial hyptertension (PAH) at the Mayo Clinic in 1987 that she became a champion of patient advocacy.
3/23/07 ImageRight Sponsors Reception to Benefit Charity
During the recent AAMGA Automation Show held at the InterContinental Hotel in Buckhead, GA, ImageRight sponsored a reception from which all proceeds were donated to the Pulmonary Hypertension Association (PHA).
3/23/07 Gilead Drug Clears European Marketing Hurdle
Gilead Sciences Inc. said a marketing authorization application for ambrisentan in Europe was validated by the European Medicines Agency. With the validation, Foster City-based Gilead will receive a milestone payment from U.K.-based GlaxoSmithKline plc (NYSE:GSK), which holds rights to commercialize the drug outside the United States. Ambrisentan is designed for the treatment of pulmonary arterial hypertension.
3/22/07 Researchers Find Protective Effects of Natural Inhibitor
A therapy that improves survival in patients with pulmonary disease may also protect patients who are exposed to cigarette smoke, according to researchers at Ohio State University Medical Center and the University of Colorado.
3/19/07 Stony Brook Researchers' Discovery Of "Anti-Pulmonary Hypertension" Gene In Mice May Impact Treatment
A team of Stony Brook University Medical Center researchers has identified the Vasoactive Intestinal Peptide (VIP) gene as an "anti-pulmonary hypertension" gene. This finding helps clarify what mechanisms lead to the disease known as idiopathic pulmonary arterial hypertension (PAH) and could have major implications for treatment.
3/17/07 Central Florida PHA Support Group Meeting Report & Pictures
3/16/07 Viagra Helps Boost Lung Function
The erectile dysfunction drug sildenafil (Viagra) may soon have a new indication for pulmonary fibrosis, say U.S. researchers. They claim that the drug helps reverse loss of lung function in patients with pulmonary fibrosis by treating their pulmonary hypertension.
3/16/07 More Than Skin Deep
A grandmother is putting on a brave face in her battle against a crippling auto-immune disorder where the body's immune system attacks itself. One of the serious complications with scleroderma is pulmonary hypertension – high blood pressure in the arteries of the lungs.
3/12/07 Sildenafil Improves Exercise Capacity in Pulmonary Fibrosis
There is more evidence that sildenafil (Viagra, Revatio) is beneficial to patients with idiopathic pulmonary fibrosis, researchers in Los Angeles reported.
3/11/07 Clinic Discovery May Help Sufferers of Lung Condition
Merle Reeseman has pulmonary hypertension, an uncommon, dangerous disease that leaves victims chronically breathless and sapped of strength. Future sufferers may fare better because of a discovery at the Cleveland Clinic that might allow earlier detection and, therefore, more-effective treatment.
3/8/07 Plans for CurePH Tournament at Cypresswood Under Way
For an event he calls a labor of love, Jack Stibbs of The Woodlands is preparing to put on his ninth annual CurePH Golf Tournament.
March 2007 Sponsors Step Up for CurePH Golf Tournament
Slated for Friday, April 27, the CurePH golf tournament and dinner auction will raise funds for research to help find a cure for pulmonary hypertension. One hundred percent of the proceeds are distributed to help fund national research and awareness of the disease to discover better treatments and hopefully find a cure.
3/5/07 Positive Study with Bosentan (Tracleer) in CTEPH
(Switzerland) In this first-ever double-blind study in a patient population suffering from this form of pulmonary hypertension, the six-minute walk test remained stable over the four months of blinded evaluation in both treatment groups. Patients on bosentan showed a significant improvement in breathlessness (Borg dyspnoea score) with exercise and there was a trend in favor of bosentan towards prevention of worsening WHO functional class.
3/2/07 Million Dollar Gifts from Oracle and United Therapeutics Help Secure PHA’s Future
PHA research and patient-serving programs to benefit from endowments
The PH community’s fight against pulmonary hypertension got a huge boost early in 2007 when PHA received the two largest gifts in the organization’s history. In January, Oracle announced a one million dollar grant to support the ongoing funding of one of PHA’s Mentored Clinical Research Awards. Just one month later, United Therapeutics honored PHA with its second million dollar grant, in support of PHA’s Support Group Leadership Training Institute.
3/2/07 In Midst of Nursing Shortage, Parents Seek Good Samaritans
A national nursing shortage and a sick little girl have combined to leave one Tooele family in a lurch. Braniff and Laura Smith have a 1-year-old daughter who requires 24-hour surveillance on a respirator.
2/23/07 Note from PHA's SLC on Recent CDC Statement
The SLC notes the observation that patients on long-term intravenous therapy are susceptible to bloodstream infections caused by a broad range of organisms. The Centers for Disease Control and Prevention (CDC) report suggests a hypothesis that different patient profiles may be subject to higher risk of various types of infections. The SLC considers the CDC document to be a hypothesis generating report which does not permit definitive or specific conclusions at this time. Therefore, the SLC supports the following:
1. Further appropriately designed studies are required to determine the validity of the hypothesis raised by the current document.
2. Pending rigorous studies, physicians should be mindful of the range of possible gram negative and gram positive infectious organisms in patients with long-term central catheters and initiate appropriately broad spectrum antibiotics in patients with suspected bloodstream infections until culture results and antibiotic sensitivity are known.
3. Choice of specific parenteral prostacyclin agents, as well as all pulmonary vascular targeted therapy should continue to be based on a global assessment of efficacy, risk, expense and feasibility of each agent in each individual patient’s clinical context.
Read more at the CDC (PDF)
2/23/07 Awaiting the Breath of Life
Once a star runner in high school, sophomore Carson Smith now sometimes struggles to walk to class without losing her breath.
2/20/07 A Breath of Hope: Cancer Drug May Provide Relief for Many Sufferers of Pulmonary Hypertension
Enter the cancer drug sorafenib. Designed to treat colon cancer, this pill turned out to be more effective against kidney tumors and now shows promise for the treatment of pulmonary hypertension. Gomberg-Maitland's group reported the successful results of sorafenib at the American Heart Association's annual meeting in November.
2/16/07 Gilead Hypertension Drug Gets Priority FDA Review
Gilead Sciences Inc. said that U.S. regulators have agreed to review ambrisentan, the company's experimental treatment for pulmonary arterial hypertension, on a priority basis.
2/16/07 Lung Transplant for Australian Teenage Girl
An Australian teenage girl Aimee Blakiston has undergone a life-saving double lung transplant at Royal Perth Hospital in Australia, reported ABC.
2/15/07 Kids Wish Network: Young Fan Meets Idol Rihanna
A young girl from Jasper recently experienced an exciting dream come true thanks to Kids Wish Network, an organization in Florida that grants wishes to children with life-threatening illnesses.
2/14/07 Artificial Lung Saves Transplant Patient
(Canada) Transplant surgeons have successfully used an external artificial lung to keep a dying patient alive while they waited for donated lungs to become available, the Toronto surgical team announced.
2/13/07 The Illness
(United Kingdom) Mrs. Taylor suffers from Eisenmenger's syndrome and Klippel-Feil syndrome. Eisenmenger's patients are typically born with a large hole in the heart, leading to their blood flow becoming reversed or bi-directional. Symptoms include shortness of breath, coughing up blood, reduced ability to exercise, fainting and palpitations.
2/12/07 European Medicines Agency EMEA Recommends Orphan Drug Designation for Elafin
(Germany) The Committee for Orphan Medical Products (COMP) of the European Agency for the Evaluation of Medicinal Products (EMEA) has adopted a positive opinion recommending the granting of orphan medicinal product designation for Elafin for treatment of pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension. The orphan drug designation will become effective upon adoption of this recommendation by the European Commission. This is expected to occur in the first quarter of 2007.
2/10/07 RAAF on Call for Transplant Girl
(Australia) The RAAF is on alert to come to the aid of a WA teenager fighting for her life in Royal Perth Hospital. Aimee Blakiston, 17, needs a heart-lung transplant to survive her rare disorder, known as primary pulmonary hypertension - but time is running out.
2/9/07 Newborn with Rare Condition Saved by Viagra
(Israel) Doctors have saved a three-week-old baby girl who suffers from a rare respiratory syndrome by treating her with Viagra, Rebecca Sieff Hospital in Safed announced Thursday. The baby has been hospitalized since she was born with pulmonary hypertension.
2/8/07 Results of Inhaled Treprostinil Controlled Pilot Studies Reported in the Journal of the American College Of Cardiology
Lung Rx, Inc., a wholly owned subsidiary of United Therapeutics Corporation, announced publication in The Journal of The American College of Cardiology (JACC) of the results of the randomized, controlled pilot studies of Treprostinil Sodium for Inhalation, an investigational compound being developed by Lung Rx for the treatment of severe pulmonary arterial hypertension. Lung Rx also announced that the name VIVETA has been submitted to the FDA as the proposed brand name for Treprostinil Sodium for Inhalation.
February 2007 Why PHARMA Must go Hollywood
The pharmaceutical industry should be a tangible demonstration of the value of the scientific enterprise. Enormous benefits to society should, and generally do, flow from a healthy pharma sector. However, despite inexorable progress in biologic research, there has been a perplexingly dismal return in the number of drugs that have been successfully developed and marketed in the last few years: The number of new drugs that the US Food & Drug Administration has approved has fallen by half since 1996, with only 20 approved in 2005.
2/6/07 Pulmonary Hypertension is Rare Blood Vessel Disorder
(Turkey) Pulmonary hypertension (PH) is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels and may become life threatening.
2/5/07 Advance In Understanding Of Blood Pressure Gene Could Lead To New Treatments
(United Kingdom) Research by scientists at UCL (University College London) has clearly demonstrated for the first time the structure and function of a gene crucial to the regulation of blood pressure. The discovery could be important in the search for new treatments for illnesses such as heart disease.
2/1/07 Improved Long-Term Outcome With Remodulin Reported in European Respiratory Journal and Rapid Transition to Remodulin Reported in Journal of Cardiovascular Pharmacology
United Therapeutics Corporation announced the publication of two important studies: Long-term outcome in pulmonary arterial hypertension patients with subcutaneous treprostinil (Eur Respir J 2006:1195-1203); and Rapid Switch from intravenous epoprostenol to intravenous treprostinil in patients with pulmonary arterial hypertension (J Cardiovasc Pharm 2007:49[1]: 1-5).
1/31/07 Teen’s Dream Comes True
“I just got to go around the store and started grabbing stuff,” said Woodard, who has Lupus, a condition where his immune system attacks his own tissue and cells. He also has pulmonary hypertension – a blood vessel disorder in his lung that can cause the pressure in his pulmonary artery to increase above a safe level.
1/28/07 Ex-Cop's Lungs Won't Be Donated
Former Mobile police officer Fredrick Renfroe was taken off life support late Friday, but the Birmingham woman waiting for his lungs did not get the call she had hoped for, even after a compromise was struck to make the organ donation possible.
1/27/07 Bands to Play at Benefit for Port Charlotte Baby's Family
Addison was born Dec. 10 at Peace River Regional Medical Center, suffering from a severe case of pulmonary hypertension, a rare lung disease that affects the pressure in the pulmonary artery, which leads from the heart to the lungs. In the condition, pressure in the vessel rises beyond normal levels.
1/26/07
Highlight from the PH Community
Carol Jean Posner Fights for a Cure By Naming PHA in Trust
Carol Jean, a retired LAPD Officer and PH patient of more than eight years, wants to see PH conquered. To that end, she asked her attorney to name PHA as a remainder beneficiary of her living trust to support research to find a cure.
1/22/07 New Cause of Chronic Liver Disease Identified in HIV-Positive Patients
The investigators suggest possible causes of NRH in HIV-positive individuals.
HIV itself is also considered as a cause, particularly as the infection has been associated with pulmonary hypertension.
1/14/07 My Rucksack Saves My Life Every Day: Exclusive Hannah's Miracle Bag
Brave Hannah Pettifer's rucksack is not just the latest must-have fashion accessory - it's a matter of life and death. Most nine-year-olds use their backpacks to hold their lunchtime sarnies when they go to school. But Hannah's hides a device that pumps vital drugs into her heart via a tube linked to a vein in her neck.
1/12/07 Highlight from the PH Community
A DRUM ROLL, PLEASE!
Congratulations to the Vanderbilt Support Group in Nashville, Tenn. -- Winner of the Circle of Friends Challenge!
For the past few months support group leaders have encouraged patients, family members and health care professionals to take on the challenge of raising funds for PHA and awareness about PH by undertaking a Circle of Friends campaign. The grand prize was a complete set of PHA's 7th International PH Conference CDs for the support group that had the highest number of campaigns. We are grateful to all support groups and their members who participated and congratulate the Vanderbilt group, which ran seven campaigns and is now the proud owner of the CDs. Contributions are still arriving and the Challenge is expected to raise well over $20,000 for PHA!
Although the Support Group Challenge is over, it's never too late for individuals to undertake a Circle of Friends letter-writing campaign. It's a fun and easy way to share your story with your family and friends while raising money for PHA. For more information, contact Andrew at giving@PHAssociation.org or 301-565-3004 x116.
1/10/07 Highlight from the PH Community
Over half a dozen patients and at least 10 other caregivers, supporters and PHA staff were in attendance at the inaugural Silver Spring, Md. PHA Support Group meeting. PHA opened its doors for the group, which met on the evening of December 4. PHA President Rino Aldrighetti was the featured speaker and several staff were on hand to support the meeting and answer any questions. Two patients had never met another PH patient before and several others jumped in to offer feedback and information in support. The caregiver of a patient approached a PHA staffer after the meeting and said, “thank God for this group, we really need this and we’ll definitely be back again.” Great job to Support Group Leader Phil LeGrande for putting this meeting together.
1/9/07 Ask the Doctor: Shari Rudavsky --
Progress Made in Pulmonary Hypertension Research
Dr. William Harvey, a pulmonologist with Respiratory and Critical Care Consultants and director of the Pulmonary Hypertension Clinic, discusses pulmonary hypertension.
1/5/07 Breathless? Could Be Pulmonary Hypertension, Doctors Say
Pulmonary hypertension, a rare disease that's often misdiagnosed, can strike at any age and leave you breathless, and doctors said that women need to pay close attention to its symptoms. Kara Baughman, 24, has been battling pulmonary hypertension since she was 10.
1/4/07 Disorder Mistaken For Asthma
Faster diagnosis, and amazing medications are giving those with a potentially deadly disorder their lives back.
You'd never know it, but Patty Farrow and Alethea Pergament aren't supposed to be alive now. 4 years ago, each was in crisis.
1/4/07 BioMarin Initiates Phase 2 Clinical Study of 6R-BH4 in Peripheral Arterial Disease
BioMarin Pharmaceutical Inc. announced that the first patient has initiated treatment in the Phase 2 clinical study of 6R-BH4 for the treatment of symptomatic peripheral arterial disease. The company expects to announce data from this study in the first half of fiscal year 2008.
1/1/07 Pulmonary Hypertension
It can strike at any age and literally leave you breathless. While it's rare, it's often misdiagnosed for years. We're talking about pulmonary hypertension and how women need to pay close attention to its symptoms.
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