Friday, August 31, 2012

iSEEK in China Receives a PHA International Seed Grant

PHA’s International Program is pleased to announce that a new seed grant has been given to iSEEK Cultural Center in China. The group plans to use the grant to enhance its website and to create awareness videos that can educate people across China about pulmonary hypertension.

Learn more about PHA's International Seed Grant Program

Thursday, August 30, 2012

Summer Store Special for Members: PHA Logo Pin

Show your PH pride on your shirt lapel with a PHA logo pin.

Only PHA Members are eligible for this special, limited-time offer. Order now through October 2.

Order your PHA logo pin

Not a member? Visit our member section to become a member of PHA today!

Questions? Contact Membership@PHAssociation.org or call 301-565-3004 x756.

Santa Barbara PH Funwalk for a Cure: a Success on Both Awareness Raising and Fundraising Fronts

Congrats to the Santa Barbara PH Support Group on a very successful inaugural Fun Walk for a Cure, which took place Aug. 18 at Chase Palm Park having already netted over $16,000 benefitting PHA's Research Program. With well over 100 participants representing 13 walk teams, the event was well-attended and even received some day-of attention from the Santa Barbara News-Press. The News-Press ran a lengthy featured article Aug. 19 which was completely devoted to promoting PH awareness among its readership and included quotes from several patients and caregivers and PH specialist Dr. Jeffrey Sager.

Tuesday, August 28, 2012

PH Fact of the Week: When Should You Call Your PH Center

It can be difficult to know when you should call your pulmonary hypertension center. Sometimes you shouldn't wait for your next scheduled appointment or phone call. Here are some good reasons to pick up the phone.

Read about 13 reasons you should call your PH center

Monday, August 27, 2012

Allentown, PA Iron Pigs Special Event on Thursday

Do you or someone you know live in the Allentown, Pa., area? If so, come out this Thursday evening to Coca Cola Park to see the Iron Pigs, the Triple A affiliate of the Philadelphia Phillies, and raise awareness and funds for pulmonary hypertension research and education.

The Iron Pigs will be playing the Scranton/Wilkes-Barre Yankees. This may be a sell-out game since the Yankees were the league champs last season. Coca Cola Park is handicap accessible, with handicap parking available.

PHA Night at Coca Cola Park: Iron Pigs Game
Thursday, August 30, 2012
PPL Picnic Patio
Coca Cola Park
1050 Iron Pigs Way
Allentown, PA 18109

6:00 – 8:00 p.m. – Dinner on the patio
7:05 p.m. – Game start time


Contact the event organizers to reserve your tickets today! You will meet Gloria at the gate with your registration form and check. Contact Gloria Hamm (event organizer) at 610-799-2766 or glolhamm@aol.com OR Joan Stevenson (event co-organizer) at 610-841-1942 or jsteve@ptd.net.

Friday, August 24, 2012

Social Security Disability Webinar Tues., Aug. 29

We have the following upcoming webinar taking place in PHA Classroom next week.

Disability Assistance Step by Step: Preparing an Effective Application
Wednesday, August 29, 2 p.m. ET/ 11 p.m. PT

Applying for Social Security Disability benefits can be challenging, but preparation and the right documents can make it easier. Join Amy Jackson of the Caring Voice Coalition (pictured right) and Charlotte McCabe, a PH patient and successful SSD applicant, for tips on the process — from deciding to apply to what to do if you receive a denial.

Register now

For assistance: Daniela, 301-565-3004 x773

Medical Professionals: 2 Webinars Next Week on Palliative Care & Micro Particles

There are two webinars coming up next week for medical professionals on PHA Online University.

Palliative Care and PH Patients
Monday, Aug. 27, 1:00 p.m. ET/10:00 a.m. PT
Join Winifred Teuteberg, MD, from the University of Pittsburgh School of Medicine for this webinar covering palliative care, how it differs from hospice care, the barriers to proper care and what can be done to overcome these obstacles to help patients gain access to the care they may need. Register now

Investigating the Role of Micro Particles in PH
Wednesday, Aug. 29, 1:00 p.m. ET/10:00 a.m. PT
During this webinar, Natalie Bauer, PhD, a researcher at University of South Alabama, Mobile, discusses the work her lab is doing to determine whether micro particles can function as a specific marker for the development and progression of PAH. Register now

You can also take the following courses that have been posted recently:

Thursday, August 23, 2012

Breathing Fire: PH and Anger

from Kiara Tatum on PHA's Generation Hope blog

Have you ever gotten so angry that you wanted to hit something or throw something? Have you ever been so mad that you gave a tongue-lashing to someone? Have you ever been so angry that your body felt so hot? I’m sure I’m not the only one who’s been there, but we have every right to feel angry. We have a chronic, incurable, life-threatening illness that has drastically changed our lives.

Read Kiara's story

Watch the Documentary RARE on National Public Television Starting August 2012

(Stanford School of Medicine) - RARE, a new feature documentary by Maren Grainger-Monsen and Nicole Newnham will be broadcast on National Public Television starting August 11, 2012.  RARE follows an extraordinary mother in a race against time as she unites a group of isolated people around the world in a quest to treat her daughter’s rare genetic disease. Read article & check out the broadcast schedule

Did You Fill Out Our Survey? We Need Some Brief Info Due to a Technical Error

Please click on the below link if you  recently completed our survey regarding pulmonary arterial hypertension (PAH) as a patient or caregiver. Our survey vendor, Harris Interactive, made a technical error and needs to collect some very brief additional information from you in order to validate the data you provided. Thank you for your patience as we work to resolve this issue.

Validate your survey data

Wednesday, August 22, 2012

Patient Telephone Support Group Meeting Tomorrow

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away. Our patient telephone support group makes it easier to participate regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group

When: Thursday, August 23, 8 p.m. ET/ 5 p.m. PT

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register now

For assistance: Debbie, 301-565-3004 x755

Homely to Homey: Peek Family Wins Exterior Makeover - Watch News Video

(Syracuse.com) - The family is one of three across the country who won a makeover.  The makeover reveal was live on the television show Fox & Friends Monday morning. David Peek said the family was thrilled to get national attention for pulmonary hypertension, the disease from which their 7-year-old daughter Sarah, died on March 10, 2010. Read article and watch news video

Gilead Stops Development of Lung Drug Cicletanine After Missing Study Goal

(Fox Business) - Gilead Sciences Inc. has discontinued development of a treatment for a rare lung disease after it failed to meet its efficacy goal in a clinical trial. The drug, cicletanine, was being evaluated in a midstage, or Phase 2, study of people with pulmonary arterial hypertension. Read article

Monday, August 20, 2012

PHA on the Road in NJ & IL: Remember to Register!

Take time today to register for PHA on the Road, PHA’s FREE regional patient and family education forum. We will be stopping in New Brunswick, N.J., (Sept. 8) and the Chicago, Ill., area (Oct. 13) with networking, educational sessions, exhibits and more. Space is limited so register early!

Learn more and register

PH Fact of the Week: 11 PHA Events Coming Up Through Sept.

There are eleven PHA events coming from now until the end of September. Take a look at our event calendar to see if there is an event near you.

View event calendar

Friday, August 17, 2012

PHA's International Conference: View Our Photo Slideshow

Check out our Conference Photo Slideshow for some great candid photos of all that our 10th Conference had to offer.

View photos

FDA Grants Orphan Drug Designation To GeNO LLC For Use Of Inhaled Nitric Oxide In Treatment Of Persistant Pulmonary Hypertension Of The Newborn (PPHN)

(The Sacramento Bee) - GeNO LLC, a privately held pharmaceutical  company developing a line of inhaled nitric oxide drug products, today announced that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation for its nitric oxide (delivered via the GeNOsyl MVG-2000 delivery system) for the treatment of persistent pulmonary hypertension in newborns (PPHN). The orphan drug designation was granted based on a plausible hypothesis for clinical superiority over the approved nitric oxide product. Read article

Thursday, August 16, 2012

PH on Fox News Channel Monday Morning – Tune in!

Tune in Monday morning as Michelle and David Peek share their family’s pulmonary hypertension story on national TV.

Monday, August 20
Around 8:30 a.m. ET (show runs from 6:00-10:00 a.m. ET)
Fox & Friends, the Fox News Channel

Michelle and Dave Peek lost their daughter Sarah to pulmonary hypertension in 2010 and are committed to educating others about the disease. They shared their family’s story as part of a contest sponsored by a local business and won.

Now, that story will be part of a live “reveal” of the contest prize on Fox and Friends this Monday, August 20 at approximately 8:30 a.m. ET. Michelle says, “please tune in if you can to see Dave and I make complete fools of ourselves, but also make Sarah very proud!”

Learn more about Fox and Friends

Wednesday, August 15, 2012

Researcher Profile: Dr. Stephen Mathai, Johns Hopkins University

Dr. Stephen Mathai is one of 48 talented researchers who has received a grant from one of PHA’s research programs. In addition to increasing what is known about pulmonary hypertension, Dr. Mathai says working with PHA, “enables me to provide better care for patients and stimulates me to study the cause, effect, and potential treatment of this disease.” Help ensure that PHA can continue to fund dedicated and talented researchers like Dr. Mathai.

We are half way to our goal of raising $20,000 in our summer appeal for pulmonary hypertension research. Help us reach our goal, support PHA's research program today!

PH Fact of the Week: Know Your Insurance Rights

COBRA, HIPAA, GINA, ERISA and FMLA... What do all of these have in common? They are all health-related federal laws designed to protect your rights no matter what type of insurance you have.

Learn about your insurance rights

Tuesday, August 14, 2012

Funwalk in Santa Barbara, CA, This Saturday

Come join us for the inaugural Santa Barbara Pulmonary Hypertension Funwalk for a Cure this Saturday, August 18, 2012 at Chase Palm Park in Santa Barbara, Calif.! Help us raise awareness and funds for research about pulmonary hypertension (PH).

Learn more and register online today! (online registration will close at 12:01 a.m. on Friday, Aug. 17)

Also, congrats to our volunteer event organizers who got press about the event in the Santa Barbara News-Press today!

Caregiver & Parent Telephone Support Groups This Week

Our Telephone Support Groups for caregivers and parents are both this week. Get the details and mark your calendar!

Caregivers on Wednesday | Parents on Thursday

Monday, August 13, 2012

Please Take Our Survey -- We Need Your Feedback!

Patient & Caregiver Survey: As many of you know, in order to help us plan future programs and resources that meet the needs of our community, PHA recently asked for feedback from patients and caregivers through an online survey. Unfortunately, our vendor Harris Interactive has made programming errors on the surveys, and we are suspending the surveys for the time being. We will be back to you with more information shortly. We are committed to resolving this issue and remain committed to the goals of the survey.

Friday, August 10, 2012

Website Discoveries: Coping with PH

Things I Found on PHA's Website by Kathryn Frix: Coping with PH 
a regular feature in PHANews

I am so inspired by those who share their experiences with others in the PH community, and by those who ask the difficult questions. Coping with PH emotionally is often at the forefront of the discussions.

I knew what I had to find on the PHA website when I read this, written on the PH Family Facebook page by my long-time friend Karen:
"I HATE YOU, PH! I know others have hated you as well, but today it is my turn. Most days I tolerate you, work around you, and ignore you if at all possible. But today I feel you've been a visitor in my life a little too long."

Read more from Kathy | Visit the Coping with PH section

Thursday, August 9, 2012

PH Fact of the Week: PH Treatments

There are currently 9 FDA-approved (U.S. Food and Drug Administration) treatments specifically for the treatment of pulmonary hypertension. They work to relieve PH symptoms through one of three pathways and can be taken orally, inhaled, intravenously and subcutaneously.

Learn more: Treatments page | Dr. Michael McGoon's latest PH Treatments: What's on the Horizon webinar recording

No Support Group in Town? Pick Up the Phone!

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away. Our patient telephone support group makes it easier to participate regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group
When: Thursday, August 23, 8 p.m. ET
Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register

For assistance: Debbie, 301-565-3004 x755

Tuesday, August 7, 2012

News Video: Miracle of Life for Young PH Patient

(HECTV) - This episode of Impact begins with a heart tugging story of a little boy suffering from a fatal illness who, today, is a true medical miracle. Local doctors use a treatment never tried in the U.S. before and make medical history. Watch video

Estrogen By-Product Linked to Development of Pulmonary Arterial Hypertension

(RT Magazine) - A British study shows that high levels of the enzyme CYP1B1 found in the lungs could play a role in the development of pulmonary arterial hypertension. CYP1B1 is responsible for breaking down estrogen into harmful smaller molecules. The findings, published in the American Heart Association’s journal Circulation could lead to new treatments to tackle the disease, which often affects younger, pre-menopausal women. Read article

Monday, August 6, 2012

Fun Walks for Early Diagnosis

This November, special events organizers across the country will let their communities know that "Sometimes it's PH." As part of Pulmonary Hypertension Awareness Month and PHA's early diagnosis campaign, special events fundraisers will focus on the importance of early PH diagnosis. PHA's signature event, "Fun Walks for a Cure," will raise funds and awareness for PH. The more events that take place across the country, the farther our message will spread, so consider hosting a walk of your own. PHA will show you how.

Order a free Fun Walk for a Cure kit today

Medical Professionals: Check Out These Upcoming Webinars

Are you a medical professional looking to attend a live webinar? PHA Online University’s upcoming webinars include the following topics:
  • August 16, Medical Professional Involvement in Support Groups
  • August 27, Palliative Care and PH Patients
  • August 29, Investigating the Role of Micro Particles in PH
Check out our current list to learn more!

Friday, August 3, 2012

FDA Safety and Innovation Act Becomes Law

President Obama signed the FDA Safety and Innovation Act into law this month. The bill provides significant incentives for the development of drugs and devices for the rare disease community.

Learn more

For Medical Professionals: Translational Medicine Highlighted in PHA's Medical Journal

Advances in Pulmonary Hypertension is the premier journal for information regarding diagnosis, pathophysiology and treatment of pulmonary hypertension. The theme of the Spring 2012 issue is "New Understandings...Better Treatments."

Read the Spring 2012 issue | Read past issues

Thursday, August 2, 2012

Fun Walk in Akron, Ohio, This Saturday

Are you in the Akron, Ohio, area or know someone who is? Local PHA Special Event volunteer organizers invite you to the 6th Annual CAPHS Fun Walk for a Cure and Awareness this Saturday, August 4 in Akron. This event will feature great food, entertainment, guest speakers and fun!

There is still time to register! Register now

Lake Grandbaby Receives Breakthrough Treatment

(LakeNewsOnline) - A baby with ties to the Lake of the Ozarks area became part of medical history recently after a new approach was used by doctors at St. Louis Children's Hospital to extend the life of the little girl who is suffering from a rare lung disease. Read article

Pulmonary Researchers Participate in Pulmonary Hypertension Association's International Conference

(Med School Watercooler) - Last month, physicians and researchers from the University of South Alabama attended such a conference – but this one had a unique twist – patients living with the condition being discussed participated in the program. The conference brings together patients, caregivers, researchers, nurses, and physicians for a weekend to learn from one another. Read article

Wednesday, August 1, 2012

Video: The Dynamic Legacy of the Pulmonary Hypertension Association

Watch this dynamic video, which premiered at PHA's 2012 Conference opening session, about the Pulmonary Hypertension Association and the work we are doing with the PH community.

PH Fact of the Week: Tips for Medication & Dressings in Warm Weather

During these hot summer months there are some things you might want to keep in mind as it relates to your pulmonary hypertension treatments. Here are some tips:
  • Do not leave medications such as Flolan® (epoprostenol), Remodulin® (treprostinil) or Ventavis® (iloprost) in the car – heat will break down these medications.
  • Epoprostenol users should keep plenty of ice packs on hand.
  • You’ll need to change your dressings more often if you tend to sweat. Keep your catheter site and dressing clean and dry.
  • Diuretics can affect your fluid balance and may accelerate dehydration in the heat. Contact your PH specialist if you have been sweating excessively, have had excessive weight loss or are experiencing low blood pressure and/or new or worsening lightheadedness or dizziness.
Read more tips on watching your health in warm weather

How a Viagra-like Drug Changed a Little Girl's Life

(My Fox Tampa Bay) - If it weren't for the tiny tubes delivering oxygen into her nose, you'd never guess 3-year-old Elizabeth Jones was sick. "Something happens and it just makes you realize how fragile she is," Diane Jones told us in a 2010 interview. Fragile, because for her first three years, Elizabeth spent half her life in hospitals. A simple cold could land her in intensive care, or worse. Read article and watch news video