Thursday, January 31, 2013

Give a Gift in Honor of Your Loved One this Valentine's Day

Say, “I love you” this Valentine’s Day with a gift of hope. Make a gift in honor of your loved one and help PHA bring hope to families fighting pulmonary hypertension across the nation.

Make a tribute gift today

Resources For Taking Better Care of Yourself or Your Loved Ones

Did you resolve to take better care of yourself or your loved ones? Coordinate your/their healthcare with the Empowered Patient Online Toolkit & resolve to attend our webinar tomorrow, Friday, Feb. 1 @ 2 p.m. ET: Starting Out the New Year Right - Making a Commitment to You!

Many Pulmonary Hypertension Patients Have Associated Diseases

Many pulmonary hypertension patients are diagnosed with PH in association with one or more related conditions. Learn more at PHAssociation.org/PHPlus and check out our new PH & associated diseases videos.

Wednesday, January 30, 2013

Faces of Pulmonary Hypertension: Jennifer's Insurance Story

"When diagnosed with PAH, who would have thought that the hardest part would not necessarily be the daily challenges that come with the disease, but instead the unexpected battlefront of insurance?"

Read Jennifer's insurance story

Are you looking for ways to be more proactive about your healthcare? Join Friday's webinar at 2 p.m. ET/11 a.m. PT to get tips that will improve your quality of life while living with pulmonary hypertension.

Separate the Zebras from the Horses: Journal Issue Focuses on Early Diagnosis

Delays in diagnosis are a major barrier to longer and better lives for pulmonary hypertension patients. What do patients and professionals need to know to spot PH early? Find out in the issue of PHA’s journal Advances in Pulmonary Hypertension dedicated to early diagnosis, a new PHA priority for primary and specialty care providers worldwide.

Read the early diagnosis issue of Advances in PH

Tuesday, January 29, 2013

Question of the Month: PHA Programs That Help You Live Better

Please finish this sentence in the comments below or send your response to Memberservices@PHAssociation.org.

The PHA program or resource that has helped me live better with PH is...

TONIGHT: Webinar To Help with Lantos Grant Application Process

Recipe for a Successful Lantos Grant
Tuesday, Jan. 29, 8 p.m. ET/5 p.m. PT
webinar - phone and online
Register now

The Tom Lantos Innovation in Community Service Awards provide grants of up to $5,000 each to members of the PH community to act on their own ideas about serving our community. Learn the ingredients of a strong Lantos Grant application in this webinar featuring Mollie Katz, PHA’s Vice President of Community Engagement and the coordinator of the Lantos grant program.

To help you prepare to submit an application by the Feb. 27 due date, Mollie will discuss the purpose of the grants, explain the grant application process, offer guidance on writing successful applications and answer your questions.

Monday, January 28, 2013

Kiara Advises: Sometimes Plans Have to Change

from post by Kiara Tatum on PHA's Generation Hope Blog...

Life doesn’t always go according to the plans, especially when you have pulmonary hypertension. You can plan for a great outing with your friends; maybe see a movie and have a nice lunch with your friends. But with a chronic illness like PH, you may wake up that morning and feel not so good and have to cancel the planned outing with your friends. Sometimes your plans just have to change.

Read Kiara's advice on being open to change

Template Letter to Gain Access to Treatments

After several state Medicaid programs removed pulmonary arterial hypertension (PAH) medications from their formularies, PHA's Scientific Leadership Council Insurance Committee wrote a letter explaining the importance of all PAH treatments being available for patients. If you encounter issues with access to your, or your patient’s, PAH treatment, use this letter along with a personalized letter from your PH specialist when you request an exemption.

View the treatment access template letter | View other template letters

Research News: GSK-3ß Signaling and Preterm Infants with Bronchopulmonary Dysplasia

from PubMed.gov...

The pathological hallmarks of bronchopulmonary dysplasia (BPD), a chronic lung disease of premature infants, include inflammation, arrested alveolarization and dysregulated angiogenesis. Severe BPD is often complicated by pulmonary hypertension (PH) that significantly increases morbidity and mortality...targeting GSK-3ß signaling may offer a novel strategy to prevent and treat preterm infants with BPD.

Read more

Webinar TODAY for Newly Diagnosed Patients

JOIN US TODAY for our biannual: Newly Diagnosed? What You Need to Know webinar
3 p.m. ET/12 p.m. PT

If you or someone you know was recently diagnosed with pulmonary hypertension, please join us for a webinar especially designed for newly diagnosed patients. Wendy Hill, MSN, NP-C, will review the basics of what every pulmonary hypertension patient should know about PH, its treatment and coping with this disease.

Register now

Friday, January 25, 2013

Faces of Pulmonary Hypertension: Newly Diagnosed Shaye

"Her doctor would say her heart palpitations, dizziness, sweating, nausea, chest pains and shortness of breath were all due to anxiety." 

Read Shaye's story

Are you newly diagnosed with pulmonary hypertension? Join us for a webinar just for you on Monday at 3 p.m. ET/12 p.m. PT.

News: New Research on Cardiopulmonary Bypass

from PubMed.gov...

Comparison of Single Lung Transplant with and without the Use of Cardiopulmonary Bypass
Fears of poor postoperative lung function after cardiopulmonary bypass appear unfounded. We could detect no difference in function or extubation time. Although the use of cardiopulmonary bypass increases postoperative bleeding and the need for transfusion, it may be used safely to facilitate lung transplantation. Read more

Contrast Study of Cardiac Output and Oxygen Metabolism in Infants with Congenital Heart Disease after Cardiopulmonary Bypass
The postoperative cardiac output decreases and oxygen metabolism becomes disordered in congenital heart disease. It is most obvious at postoperative 12 h. And complex CHD is more serious. Cardiac output should be actively boosted to improve tissue oxygen metabolism during an early postoperative period. Read more

Thank You! End of Year Gifts Top $95,000

Because of your generosity, we were able to raise more than $95,000 for PHA's many programs and services through our End of Year Appeal. The work of this organization would not be possible without the dedication, support and passion of our PHriends. Thank you to everyone who supported this effort.

Thursday, January 24, 2013

Vancouver Pulmonary Hypertension Symposium in February

Attention West Coast! Did you know about the Western Regional Pulmonary Hypertension Symposium hosted by the BC PH Society and PHA Canada next month (Feb 22-24)? The theme is “PHighting Back: Supporting Mind, Body, and Soul,” and will take place at the Terminal City Club in Vancouver. All are welcome! And don't forget your passport.

Register or learn more

Upcoming Webinar: Making a Commitment to Your Health for the New Year

Starting Out the New Year Right - Making a Commitment to You!
Friday, Feb. 1, 2:00 p.m. ET/11:00 a.m. PT
webinar: phone AND web
Register now

Start out the New Year right by making a commitment to yourself to achieve your best health possible. Join Christine Archer-Chicko, MSN, CRNP as she shares strategies on being proactive about your health and improving your quality of life while living with pulmonary hypertension.

Chris Archer-Chicko is the nurse coordinator of the Pulmonary Vascular Disease Program at Penn Presbyterian Medical Center in Philadelphia, Pennsylvania. She has been caring for Pulmonary Hypertension patients for more than 19 years. She is a member of both the PHA and PHPN and has presented at many PHA conferences. Chris received PHA’s Outstanding Medical Professional award in 2008. In 2012 Chris was recognized by Johnson & Johnson’s Campaign for Nursing’s Future when they chose to profile her career as a pulmonary nurse in their electronic newsletter.

News: Relationship Between Serum Uric Acid Levels and Patient Conditions and Prognosis in Idiopathic Pulmonary Arterial Hypertension

Study findings in PubMed.gov...

The serum level of uric acid correlates significantly with patient conditions and prognosis in IPAH. And a higher serum level of uric acid predicts worse conditions and prognosis.

Read more

News: Fetal Growth Restriction and Pulmonary Hypertension in Premature Infants with Bronchopulmonary Dysplasia

Study findings published in the Journal of Perinatology...

Birth weight for gestational age is an important predictor of pulmonary hypertension in premature infants with moderate to severe bronchopulmonary dysplasia. Our findings contribute to the growing evidence supporting fetal mechanisms of later onset pulmonary vascular disease.

Read more

Wednesday, January 23, 2013

Newly Diagnosed? Check out Coping Guide

Are you coping with a new diagnosis of pulmonary hypertension? While you are waiting to attend the Newly Diagnosed Webinar on January 28, check out Coping with Pulmonary Hypertension, A Guide for the Newly Diagnosed.

Respiratory Therapy Credits Now Available on PHA Online University

Medical Professionals...

Sessions from the last Pulmonary Hypertension Professional Network Symposium have been re-accredited to offer respiratory therapists who may not have been able to attend the opportunity to earn up to 6.0 hours of Continuing Respiratory Care Education (CRCE).

Overview of Medical Testing in PH Patients: Echocardiography, Right Heart Catheterization, VQ and CT Scans

Topics in Respiratory Therapy and Pulmonary Rehabilitation

Speakers include: C. Gregory Elliott, MD, from the University of Utah School of Medicine, Paul Forfia, MD, from the University of Pennsylvania and Karen Fagan, MD, from University of South Alabama.

Medicare Advantage Disenrollment Period Ends Feb. 14

Don’t miss the Medicare Advantage Disenrollment Period! The Disenrollment Period — your opportunity to switch from a Medicare Advantage, or private Medicare, plan to Original Medicare — occurs between Jan. 1 and Feb. 14.

Learn more about the Medicare Advantage Disenrollment Period

Tuesday, January 22, 2013

PH Fact: Pulmonary Hypertension and HIV

1 out of every 200 HIV patients develop at least mild PH! Watch the video below and learn more on PHA's PH & HIV page.


Create Your Media List for PH Awareness

Is your New Year's resolution to raise pulmonary hypertension awareness in the media? Here's one tip to build the foundation for your upcoming media success: brainstorm a list of reporters in your area who are most likely to cover your story.

Get more tips on creating your media list from Diane Cowen of the Houston Chronicle and Robert McCartney of the Washington Post.

Monday, January 21, 2013

Pulmonary Hypertension Treatments Worldwide

Did you ever wonder what pulmonary hypertension treatments are available in countries around the world? Check it out!

News: Pulmonary Hypertension Could Be Late Effect of Childhood Cancer Therapy

from Doctors Lounge

Gregory T. Armstrong, MD, of St. Jude Children's Research Hospital in Memphis, Tenn., and colleagues conducted a cross-sectional assessment involving 498 adult survivors of childhood cancer to examine the prevalence of pulmonary hypertension, a late effect of cancer therapy.

Read full article

Chair Yoga Tomorrow!

Calm, Cool and Collected: Restorative Yoga for the PH Patient
Tuesday, Jan. 22 at 2 p.m. ET/11 a.m. PT
Register


Presenter: Rana Adawi Awdish, MD

Yoga can be a safe, restorative and rewarding option for pulmonary hypertension patients looking to stay active. Join Rana Awdish, MD, for a presentation on the benefits and best practices for PH-friendly yoga.

Friday, January 18, 2013

Newly Diagnosed? Make Sure You Have Your PH Survival Guide

Newly Diagnosed? …. Waiting for the January 28 Webinar? - check out...

"Pulmonary Hypertension: A Patient’s Survival Guide," a resource book for patients and caregivers written by PH patient Gail Boyer Hayes. This book serves as a soup-to-nuts guide for patients and their loved ones covering topics like the mechanics of pulmonary hypertension, the latest treatments, patient care and lifestyle issues.

Learn more and order yours today

News: Disruption of Cellular Signaling Identified in Pulmonary Arterial Hypertension

According to a study appearing in Nature Medicine, reduced expression of the apelin gene and increased the fibroblast growth factor (FGF) signaling could play an important role in pulmonary arterial hypertension. Increased FGF can cause abnormal cellular growth leading to blood vessel remodeling.

Read more

PHA Offices Closed Monday

Pulmonary Hypertension Association offices will be closed Monday for the holiday.

News: Student Studies Idiopathic Pulmonary Arterial Hypertension in Science Talent Search

from San Jose Mercury News

Honoring bright young scientific minds is becoming a symbol of a new year in the West Valley. Intel recently announced this year's pool of semifinalists in its annual Intel Science Talent Search. The science contest is one of the most prestigious in the nation for pre-college students.

Jack, 17, of Saratoga, studied associations with increased pulmonary artery smooth muscle cell proliferation in idiopathic pulmonary arterial hypertension.

Read full San Jose Mercury News article

Thursday, January 17, 2013

News: Link Between Abnormal Bone Marrow Cells and Pulmonary Arterial Hypertension

Investigators have uncovered a new clue to the cause of pulmonary arterial hypertension, a progressive and frequently lethal disease that in many cases arises mysteriously. A report published in June 2012 describes findings suggesting that bone marrow-derived endothelial progenitor cells play a role in causing the vascular injury in the lung that underlies the disease.

This study was released by the National Heart, Lung, and Blood Institute (NHLBI) on a list of their top research findings of 2012.

Read More

Webinar TONIGHT: Cardiac Catheterization in Pediatric PH Patients

Pediatric Webinar Series: Cardiac Catheterization in Pediatric PH Patients
TONIGHT, 8:30 p.m. ET/5:30 p.m. PT

Right heart cardiac catheterization is considered the “gold standard” for the diagnosis of pulmonary hypertension. In this presentation, Dr. Russel Hirsch of Cincinnati Children's Hospital Medical Center will review the need for cardiac catheterization, describe the course of a standard procedure and the therapeutic drug testing that happens during the catheterization, and discuss the risks associated with cardiac catheterization for pediatric patients.

Learn more and register

Faces of Pulmonary Hypertension & Lupus: Nicole Shirey

"My life would never be the same. I had to stop working and wasn't able to take care of my kids on my own. I couldn't even take care of myself. It has been the hardest thing in my life thus far — letting someone else take care of me."

Read Nicole's full story

We have four videos on pulmonary hypertension and associated diseases, including lupus. Please help PHA maintain the quality of the resources we provide for you by taking the short survey on these videos. The survey closes tomorrow. Thank you!

Wednesday, January 16, 2013

Congenital Heart Disease and Pulmonary Hypertension

5-10% of congenital heart disease patients go on to develop pulmonary hypertension. View our video to learn more...


Learn the Ingredients for a Strong Lantos Grant Application

Recipe for a Successful Lantos Grant
Tuesday, Jan. 29, 8 p.m. ET/5 p.m. PT
webinar - phone and online
Register now

The Tom Lantos Innovation in Community Service Awards provide grants of up to $5,000 each to members of the PH community to act on their own ideas about serving our community. Learn the ingredients of a strong Lantos Grant application in this webinar featuring Mollie Katz, PHA’s Vice President of Community Engagement and the coordinator of the Lantos grant program.

To help you prepare to submit an application by the Feb. 27 due date, Mollie will discuss the purpose of the grants, explain the grant application process, offer guidance on writing successful applications and answer your questions.

Caregiver Call TODAY at 1:30 P.M. ET

Caregivers Telephone Support Group
TODAY, 1:30 p.m. ET/10:30 a.m. PT

January is a time to think about our goals – for ourselves and in our role as caregivers. Take an hour to share and reflect on your goals with others going through similar experiences. Call lasts one hour; we welcome you to join us for as long as you like.

Join us

Tuesday, January 15, 2013

Know Your Insurance Rights

This September, the chronic disease community lost a great warrior with the passing of Jennifer Jaff, the founder and executive director of Advocacy for Patients with Chronic Illness, Inc. (APCI). Since founding APCI in 2005, Ms. Jaff used skills from her previous job as a lawyer to help patients with chronic conditions obtain healthcare coverage. She created a range of informational resources, including a book, Know Your Rights, which provides guidance for people with chronic conditions on how to navigate the insurance realm and assert their rights.

As someone well versed in her rights and willing to make her voice heard, Ms. Jaff was a model insurance consumer and advocate. She pushed for the provision of the Affordable Care Act that prevents insurance companies from discriminating against people with pre-existing conditions.

This new year, you can become a powerful advocate as well. Read the latest issue of Coverage Connection to learn how.

Webinar on Yoga for Pulmonary Hypertension Patients Next Week

Calm, Cool and Collected: Restorative Yoga for the PH Patient
Tuesday, Jan. 22 at 2 p.m. ET/11 a.m. PT
Register

Presenter: Rana Adawi Awdish, MD

Yoga can be a safe, restorative and rewarding option for pulmonary hypertension patients looking to stay active. Join Rana Awdish, MD, for a presentation on the benefits and best practices for PH-friendly yoga.

Dr. Rana Adawi Awdish is currently a pulmonary hypertension specialist and practicing physician at Henry Ford Health System in Detroit, Mich. Prior to coming to Henry Ford, Dr. Awdish completed her training at Beth Israel in Manhattan. She attended Wayne State University Medical School, and completed her undergraduate degree at the University of Michigan in Ann Arbor. She is currently triple board-certified in Internal Medicine, Pulmonary and Critical Care Medicine. She has studied the health benefits of Yoga Practice, specifically Core Strength Vinyasa Yoga, since 2002.

Caregiver Poll: Standing Up for Your Loved One or Yourself

Caregivers - what is one everyday situation (at home, work, the hospital, grocery store ....etc) where you frequently find that you need to stand up for your loved one and/or yourself and explain your/their needs to others? Please respond in the comments below or to MichalR@PHAssociation.org.

Monday, January 14, 2013

Living Life With a Chronic Condition? Get the Most Out of Time-Limited Medical Appointments!

Help us get the word out on this great webinar about Nurturing Partnerships with your Medical Professionals to Get the Best Care Possible; Useful tools and advice for anyone living life with a chronic condition - Watch the recording

Medication Reminder Tools You Can Use

Did you resolve to be better with taking your medications on time for the New Year? There are widely available devices and services that can remind you to take your medication and improve your compliance. To help you find one that meets your individual needs, the Caring Voice Coalition offers a comprehensive list of recommended medication reminder tools.

View the list of medication reminder tools | Learn more about medication management and pulmonary hypertension

Friday, January 11, 2013

Pulmonary Hypertension Fact for the New Year: Exercise & PH

There have been several published articles showing increased walk distance in PAH patients undergoing cardiopulmonary rehabilitation programs. However, relatively little is known about the risks and benefits of exercise for pulmonary hypertension patients.

Because of the varying severity of PH from patient to patient (and other health-related factors), recommendations on exercise for PH patients are different for each individual, and may change over time depending on symptoms and response to treatment. Your PH specialist can help you create an exercise program that works for you. Always speak with your PH doctor before performing strenuous labor or beginning an exercise regimen.

Learn more about pulmonary hypertension and exercise | Attend our Jan. 22 webinar on yoga for the PH patient

Watch & Share Lupus and Pulmonary Hypertension Video

About 5 in 1000 Lupus patients develop pulmonary arterial hypertension (PAH). It is critically important to do further testing to determine if it is PAH causing the shortness of breath - as Lupus can affect the heart, heart valves, lung and muscles that surround the lung and chest wall.

Watch, Learn and Share the below video - and see more from our friends Lupus Foundation of America and Cleveland Clinic.

Reception for Chicagoland PHers Jan. 17

Guest post from Carl Hicks, PHA Vice President, Field Operations:

Dear PHriends,

Many of you know me as Carl Hicks, chairman of the Board of PHA. I’ve taken on a new role at PHA and it is one of the most important initiatives we’ve undertaken since we formed. Chicagoland will play a significant role in that, and I am coming next week to tell you about it. I’ll also have the pleasure of introducing to you Lisa Beth Gansberg (pictured middle), our first Executive Director of the Greater Chicago Chapter of the Pulmonary Hypertension Association. Please plan to join us at a casual get together to learn about our exciting new efforts that are "Igniting the Flame and Lights of Hope.”

January 17, 2013
6:30-8 p.m.
Gino's on Higgin's (near O'Hare Airport)
8725 W. Higgins Road
Chicago, IL 60631


Dinner will be served "Chicago Style"

I will provide you with a brief overview of our localized campaign in the Chicagoland area to help raise funds for the extended network of programs, services and research that PHA is currently providing and share the vision to increase awareness of PH through cause-related events.

To register, please email us care of: LisaBethGansberg@IL-PHA.org or call Lisa Beth directly at 847-501-0011.

If you are unable to make it, you can still keep up with the PHun on Facebook and on twitter @phachicago. You can also sign up for chapter email alerts by emailing Database@PHAssociation.org with the subject line “Subscribe Chicago Chapter email alerts.”

Bring anyone you know in the PH PHamily and feel free to forward this message to anyone else who may be interested in hearing this exciting news with Chicago in the forefront.

With warmest regards,
Carl Hicks
Vice President, Field Operations

P.S. For more information you can read Rino's latest blog explaining the inception of the Chapter model.

Lisa Beth can be contacted here:

Lisa Beth Gansberg
Executive Director, PHA Chicago Chapter
Pulmonary Hypertension Association
847-501-0011
Facebook - https://www.facebook.com/PHAChicago
Twitter - @phachicago
Patient-to-Patient Support Line: 800-748-7274
www.PHAssociation.org

Thursday, January 10, 2013

"What are You Eating?" Asks Kiara

As part of a month-long effort to connect you with resources to help you live a happier and healthier life for the New Year, here is a great post on the Generation Hope blog from Kiara about eating healthier as a pulmonary hypertension patient. We hope these tips from a fellow PH patient are helpful to you in your efforts to eat healthier, especially those of you have made New Year's resolutions to do so.

Read Kiara's "What Are Your Eating?" blog post

PH and Scleroderma, HIV, Lupus and CHD… We Need Your Opinion!

PHA would like your input on a set of videos we have created on pulmonary hypertension and several associated conditions (see below). Your insight can help us make a difference in the use of these videos! Please watch each video and fill in the electronic survey below to share your views. We encourage you to share the videos and survey with other people, as we aim to gather at least 20 responses to each video. Everyone is welcome to watch and share – we are interested in feedback from people with and without associated conditions.

Watch videos:
Give us your opinion on the videos

More information on the PH Associated Disease Video Campaign:

As you may know diagnosis of pulmonary hypertension often takes years, during which patients are commonly misdiagnosed one or more times. In the end, a majority of patients have reached the advanced stages of the disease by the time they are finally diagnosed by right heart catheterization.

In addition, many pulmonary hypertension patients are diagnosed with PH in association with one or more related conditions. For instance, research shows that up to 30% of scleroderma patients, 20-40% of sickle cell patients and one out of every 200 HIV patients develop PH.

PHA is pleased to unveil the newest video series “PH Plus” featuring both doctors and patients.  Learn more as patients living with and doctors who treat PH & HIV, PH & scleroderma, PH & lupus and PH & congenital heart disease explain more about the complex interaction of having both illnesses. 

Learn more about associated diseases and pulmonary hypertension

Seeking Teacher Input

PHA is looking for teachers who can review our School Resource Guide and offer us input on making it more teacher-friendly and effective. We expect that reviewing the Guide and answering the survey should take no more than an hour altogether.

We would like to collect all responses by midnight, January 14, 2013.

You can download the resource on the survey page: http://www.surveymonkey.com/s/WFWWBYB

Please feel free to share this survey with other teachers!

Wednesday, January 9, 2013

Haley's Art Transforms Into Pulmonary Hypertension Awareness Tees

Pulmonary Hypertension Awareness Story
Submitted by: Haley Lynn, patient

I wasn't sure if y'all wanted to know about my T-shirt design for my awareness raising in November. I originally painted the design out of boredom, then had a lot of requests to put it on a shirt! They were definitely a success!! More information is up on my blog, which is designed for people suffering with any kind of rare disease, from fashion advice all the way to personal and emotional problems when it comes to dealing with PH. Thank y'all so much!! :)

Read more on Haley's blog

Caregiver Support Call on New Year's Resolutions

Caregivers Telephone Support Group
Wednesday, Jan. 16, 1:30 p.m. ET/10:30 a.m. PT

January is a time to think about our goals – for ourselves and in our role as caregivers. Take an hour to share and reflect on your goals with others going through similar experiences. Call lasts one hour; we welcome you to join us for as long as you like.

Learn more and join the conversation

Make Your Idea Reality with a 2013 Tom Lantos Grant

Living with daily pulmonary hypertension challenges, patients, families and caregivers form plenty of ideas for making the PH journey better. Those ideas may become reality through the Tom Lantos Awards for Innovation in Community Service. For the fourth consecutive year, PHA will offer these grants for projects that advance the PH cause.

This program, now in its fourth year, provides as many as 10 grants of up to $5,000 for projects to raise PH awareness, create PH resources, educate, advocate or promote a PHA-related initiative. Projects may also replicate efforts from previous Lantos grants, for example introducing a project to new audiences or adding a new component. Funding for the Lantos Awards is provided by Gilead.

In the past, Lantos grantees have used their funding to produce videos and posters, organize the PH community in a foreign country, develop items to comfort and support children with PH, and cheer PH patients with colorful quilts.

The grant program is named after the late Rep. Tom Lantos, a longtime congressman from California who was the original sponsor of our bill in Congress after his granddaughter was diagnosed with PH.

Applications for these grants are being accepted through Feb. 27 and will be reviewed by a panel of PH community leaders in March. To learn more about the program, eligibility and how to apply, visit www.PHAssociation.org/TomLantosAwards

Photo above: Ryan and Bonnie with the coffee cup holders they created raising awareness about pulmonary hypertension using a Tom Lantos Grant.

Tuesday, January 8, 2013

Recall Alert: Grab 'n Go Vantage Portable Oxygen Cylinder Units

From Praxair Press Release:

Praxair, Inc. announced that it is in the process of conducting a voluntary recall involving Grab ‘n Go Vantage portable oxygen cylinder units. Praxair is making a minor modification to the affected units as they come in for routine servicing and filling. Praxair has already communicated with its customers and the U.S. Food and Drug Administration (FDA).

Praxair initiated this field correction after becoming aware of a few isolated incidents of ignition inside Grab ‘n Go oxygen cylinders that had been knocked over and subject to significant physical impact. Based on the preliminary results of Praxair’s review of these few incidents, it appears that Grab ‘n Go units fitted with certain equipment (a type of o-ring) may be more prone to this type of incident.

Read full press release

PH in the News: Disruption of Cellular Signaling Identified in Pulmonary Arterial Hypertension

Impairment of a key signaling cascade in the pulmonary blood vessels plays an important role in pulmonary arterial hypertension (PAH), a Yale study has found.

Recent studies have described the role of the gene apelin in the signaling process that maintains normal pulmonary vascular function. Apelin levels have been found to be significantly reduced in patients with PAH.

Read article

PH in the News: FDA Accepts Actelion's Filing for PAH Drug Opsumit

Actelion announced that the Food and Drug Administration (FDA) accepted the company's filing seeking approval of Opsumit (macitentan) for the treatment of patients with pulmonary arterial hypertension (PAH).

Read article

Support PHA Programs

The Pulmonary Hypertension Association is funded by the generosity of community members like you. Support PHA life changing programs and services for patients and family members this year by giving to PHA’s 2012 End of Year Appeal.

Learn more | Donate now

Monday, January 7, 2013

FAQs for Those Newly Diagnosed with Pulmonary Hypertension

Are you or someone you know newly diagnosed with pulmonary hypertension? PHA is hosting a live webinar for newly diagnosed persons on Jan. 28 at 3 p.m. ET/12 p.m. PT. While you are waiting for the webinar read up on our FAQs for newly diagnosed patients.

Save the Date for Popular CrawPHish Festival in Texas

Save the Date! The Woodlands (TX) CrawPHish Festival is taking place in March – and we can’t wait! If you live in the Houston area, make plans to purchase your tickets. Visit www.WoodlandsCrawfish.com for more information!

Friday, January 4, 2013

Wegener Family Tied PH Awareness Into Holiday Celebration

The Wegener family tied PH awareness into their holiday celebration with these PH ribbon lights! Did you raise PH awareness this holiday season? View the video
 

Thursday, January 3, 2013

Manage Your Health with Mobile Apps

Resolving to manage your health... Check out U.S. Department of Health and Human Services health apps. They offer 25 health-related apps. Learn more

PH Kids Exchanged Cards & Support for the Holidays

Holiday cards can be a reminder of friends and family from far away, an invisible but ever-present community of support and love. For children with pulmonary hypertension, a holiday card exchange this season also brought a special kind of strength – the knowledge that other young PH patients, wherever they may live, understand their struggles with this rare, chronic disease.

“Zoe has enjoyed opening the cards and seeing where everyone lives,” Star shared. Her 9-year old daughter, Zoe, was diagnosed just this past September. “It also has helped her realize that we are not the only ones dealing with this. One of the cards had ‘PHamily’ and she first said, ‘Momma they misspelled family’ and then suddenly realized what it meant. As small as that seems it got her to open up a bit more about how she feels.”

The card exchange, now in its second year, was coordinated by parents on the Families of Children with Pulmonary Hypertension Facebook group. More than 30 children participated from around the U.S., as well as from Canada and Ireland.

“Abby's entire December was brightened by the cards received from so many different places,” wrote Jackie, whose 11-year-old daughter Abby was diagnosed with PH at age 2. “I'm so glad we live in an age in which technology provides not only good medical advances, but also a connection to help us not feel alone with this cruddy disease.”

To connect with the Families of Children with PH Facebook group, contact PHA on Facebook. Learn more about resources for families

Photo above: Brooke, age 14, poses with holiday cards she received through the PH kids’ card exchange.

Wednesday, January 2, 2013

Cardiac Catheterization in Pediatric PH Patients

Join us for this upcoming webinar Thursday, Jan. 17 at 8:30 p.m. ET/5:30 p.m. PT.

Right heart cardiac catheterization is considered the “gold standard” for pulmonary hypertension diagnosis. In this presentation, Dr. Hirsch will review the need for cardiac catheterization, describe the course of a standard procedure and the therapeutic drug testing that happens during the catheterization, and discuss the risks associated with cardiac catheterization for pediatric patients.

Learn more and register

As We Begin 2013…An Important New Direction for PHA

Read about and learn why the new field offices in New York, Chicago and San Francisco are a key component of the funding strategy that will allow the Pulmonary Hypertension Association to continue to respond to our community’s needs.

Read more