Tuesday, December 31, 2013

Grupos de Apoyo en línea

¿Quieres hablar con alguien que entiende cómo es vivir con hipertensión pulmonar? Cada martes a las 20:00 ET (hora Nueva York) tienes la oportunidad de participar en un grupo de apoyo por chat en español. Ingresa por el “chat room” de PHA, www.PHAssociation.org/ChatRoom

Monday, December 30, 2013

Act Now to Help PHA Make the Match

Make a gift and see it double! Thanks to a matching gift from Actelion Pharmaceuticals, every donation from supporters like you is being matched up to $25,000. That means:
  • Your gift of $50 becomes $100
  • Your gift of $150 becomes $300
  • Your gift of $500 becomes $1,000
If you or someone you love has been helped by the services PHA provides then you know first-hand how critical these programs are. Make your gift today to double your impact on these important resources.

Your donations will provide a PHA membership for a patient facing financial strain, connect a newly diagnosed patient with the resources she needs to understand PH, sustain and expand PHA's five distinct research programs at a time when government cutbacks are reducing support for these essential efforts and so much more. If we don't support these life-changing activities who will? To see even more ways your donation will support PHA’s mission, view our Catalog of Hope.

Donate today to help us continue to spread hope.

Sunday, December 29, 2013

Faces of PH: Empowered by Hope Podcasts

Caregiver and father Steve Van Wormer hosts a series of podcasts dedicated to raising awareness about pulmonary hypertension. Each podcast episode contains an impactful and insightful conversation with members of the PH community. Three new podcasts were recently posted with interviews of Dr. Juan Alejos (pictured right), Jack Stibbs and Steve's son Lucas Van Wormer.

Listen to podcast interviews

Saturday, December 28, 2013

Fun Event in Mobile This Week

Hey, Mobile! Joins us at the University of South Alabama this coming Saturday, Jan. 4, for PHA’s first special event of the year – PHind a Cure 5K & Fun Run. A post race party, door prizes, refreshments and an educational session featuring Dr. Karen Fagan will make this an exciting event you will not want to miss!

Learn more and register

Thursday, December 26, 2013

Thank You to Our Volunteer Event Organizers

This year has been a successful one for our special events. Volunteers from the PH community organized fun walks, galas, golf tournaments and more to raise awareness and funds for pulmonary hypertension. The PH message reached communities across the country at local events and through media coverage event organizers garnered.

And drum roll please…

Our special event organizers raised $1 million in 2013! Many thanks to all our volunteer organizers for helping us reach this goal. We couldn’t have done it without you!

Tuesday, December 24, 2013

Happy Holidays from PHA

Best wishes this holiday season! All of us at PHA wish you a happy and heartfelt new year. (click on the photo so see a larger version)

PHA Closed Dec. 25 - Jan. 1

PHA offices will be closed Dec. 25 through Jan. 1 for the holidays.

Monday, December 23, 2013

Connect with PHriends Today

Did you know that PHA PHriends host online chats daily? You can connect with PHriends from across the country! Learn more and maybe join a chat today.

Would you be interested in becoming a chat host or volunteering with PHA, apply to become a PHA PHriend today.

Sunday, December 22, 2013

New Pulmonary Hypertension Drug Approved!

Friday, the U.S. Food and Drug Administration (FDA) approved United Therapeutics' oral treprostinil, an extended-release tablet commercially known as Orenitram, for the treatment of pulmonary arterial hypertension (PAH). Orenitram is the first orally administered prostacyclin analogue approved by the FDA for any disease.

"PHA is always pleased as new treatments become available. They increase options for patient treatment, both individually and in combination with others," says PHA President Rino Aldrighetti. "This is the twelfth treatment for PAH, the third new therapy to be FDA approved in the last two months. During the past 10 years, the average number of drugs approved per year for all rare diseases is fewer than thirty. To have this kind of advancement for PAH is extraordinary and speaks to the medical and research structure that has been built in this field."

Most Effective Use of Treatments Requires Early Diagnosis

While huge strides have been made in the advancement of therapeutic options, the time it takes to reach a correct PH diagnosis has not changed over the last 20 years. Many patients will see three or more different physicians over a three year period before they are properly diagnosed with PH, and almost three-fourths have advanced PH by the time they are diagnosed.

“Misdiagnosis and delayed diagnosis have an impact on patient survival and quality of life,” explains PHA Senior Director of Volunteer Services Debbie Castro. "Because PHA sees early diagnosis as a huge priority, we are working with medical professionals and patients to improve diagnosis through our early diagnosis campaign, Sometimes it’s PH."

More Needs to be Done for Children

While there are 12 treatments for pulmonary arterial hypertension (PAH), none are specifically approved for pediatric patients. PHA has launched the only pediatric PH research program in the United States, the Robyn Barst Pediatric Research and Mentoring Fund.

And, says Rino, “Ultimately, our goal is a cure. With increasing numbers of researchers engaged in more studies every year, we are hopeful and encouraged as we see that hope turning into action.”

Learn more: Read article | PH treatments in the U.S. | PH treatments worldwide | Sometimes it’s PH website | Robyn Barst Pediatric Research and Mentoring Fund

Our Scientific Leadership Council is working on a forthcoming treatment fact sheet with more details. When completed the fact sheet will be available here: www.PHAssociation.org/Treatments

Saturday, December 21, 2013

Singapore’s Awareness Month 2013 a Success

PH Awareness Month story
submitted by S.M. Amin, leader of the Singapore PH Support Group

center with blue lips and glasses Professor James Yip,
Director of the Structural Heart and Adult
Congenital  Heart Department at NUH Heart Centre;
to his right is Amin
November 2013 marked the 1st Pulmonary Hypertension Awareness Month Campaign in and for the patients of Singapore. Blue Lips Kisses was organized by the PH Singapore Support Group with the kind assistance of the pharmaceutical companies and hospitals.

The event was held in five different hospitals to cater to the different patient populations. Staff of industry, hospitals and patients rendered support to mind the booth to make it a successful event. 

The main event was held at NUH Heart Centre as they were also celebrating the 10th Anniversary for the Structural Heart Disease Clinic in conjunction with the PH Awareness Month Campaign. Goodie bags were given away with DJ music and balloons. Patients made their way to the hospital to show support and engage in volunteer work.

At other hospitals a note pad and pen were given away for any blue lip contribution. A total of 1111 blue lip kisses were collected from all five hospitals. Hooray! This was great compared to what we did in 2011, which was only 875 blue lips.

So now we can proudly say that 1111 people know & have heard of pulmonary hypertension. A big thank you to all who have worked hard and coordinated with me and the industry to make this a heart-warming and successful event.

Congrats!

New E-Learning Guide: Emotional Well-Being Through the Holidays

The weather's cooling down, and the holidays are on everyone's mind. This e-Learning Guide provides tips and resources for ensuring emotional well-being with PH throughout the holidays. Learn more.
Visit PHA’s other e-Learning guides.

Friday, December 20, 2013

Question of the Week


Chicago Sun-Times Features Pulmonary Hypertension

Marathon runner Anthony Piatek was featured in the Chicago Sun-Times honoring the memory of his mother who passed from complications related to pulmonary hypertension five months ago. Anthony ran the Chicago marathon this year to help raise awareness and funds for pulmonary hypertension. In this article, he is again raising awareness and encouraging others to support the cause.

Read the article | Learn how you can share your story with the media

Happy Birthday, Kate!

Happy Birthday to Team Phenomenal Hope member, Kate Bennett!
Join us in sending your birthday wishes for Kate on Facebook

Did you know that Kate has not one, not two, but THREE post-graduate degrees? She earned her post-graduate degrees from University of Glasgow, Montana State University and the University of Pittsburgh.

Kate is an integral part of Team PHenomenal Hope as Crew Chief and helping to prepare for Race Across America. Learn more about Kate, how she got started in cycling and even a really cool, little-known facts about her.

Thursday, December 19, 2013

A Heart for Christmas Light Display

The San Francisco CBS television station just featured a news segment about a light display that was setup to honor pulmonary hypertension patient Katie Grace and her wait on the transplant list. As the year draws to a close, please consider giving one last gift to PHA on behalf of a very brave Katie Grace Groebner and the thousands of pediatric PH patients who remain desperate for a cure.

Watch the video clip | Donate in honor of Katie Grace

PHA Offices Closed Dec. 25 - Jan. 1

PHA offices will be closed Dec. 25 through Jan. 1 for the holidays.

Pulmonary Hypertension Awareness Reaches Millions

Awareness about pulmonary hypertension reached millions in November for PH Awareness Month with two big media hits.

Working with PHA, Costco included an article and link to our early diagnosis video in the November issue of their Costco Connection magazine. The magazine in print and online has a readership of 8.5 million, all members of Costco across the U.S. View the article

Meanwhile, members of the PH association in China, iSEEK, appeared on the top-watched Chinese TV talent show, the Chinese Dream Show. These women discussed the difficulties of having PH in China. After the episode aired, one of iSEEK’s videos explaining PH and telling an iSEEK leader’s story became a front-page video on YouKu (the Chinese version of YouTube); it currently has more than 6.4 million views.

Go PH awareness!

Wednesday, December 18, 2013

Preparing for Travel with Pulmonary Hypertension

“I printed the Empowered Patient Toolkit, and I take it with me to all my doctors’ appointments. It helps me keep on top of my PH without having to think about my PH all the time.” – Diane, Long Term PHer

These worksheets included in the Empowered Patient Toolkit can help you make sure you’re prepared for traveling this holiday season.


View the entire Empowered Patient Toolkit

Remembering Those We Have Lost

The holidays can bring great joy as we reflect on seasons past and seasons to come.  However, for those who have experienced the loss of a loved one, the holidays can be very challenging. Join us for a virtual candlelight vigil to reflect, share and discuss the loss of a loved one due to pulmonary hypertension. The call will be facilitated by Rev. Steve White, PhD.

Annual Candlelight Vigil
Thurs, Dec. 19, 2013
8:30 p.m. ET/5:30 p.m. PT

Register

PH Community Shares Similar Stories of Symptoms and Misdiagnosis

We recently asked our online community on Facebook to share what symptoms they experienced that led to their diagnosis with pulmonary hypertension as well as whether they were misdiagnosed. We discovered that the most common symptom shared by patients was shortness of breath. Many touched on how activities like climbing up a flight of stairs or even walking from one room to another were not effortless like they used to be. Patients also shared symptoms like bluish lips and skin, fatigue, fainting, coughing, chest pain and dizziness.

Unfortunately the most common symptoms of PH are also associated with many other conditions. As a result, PH patients are often misdiagnosed with other, more common chronic conditions such as asthma or allergies. Many patients are told they were simply overweight. It is important for doctors to consider PH with patients facing such symptoms after ruling out other conditions.This is what motivates our Sometimes It’s PH early diagnosis campaign.

Patients will reach the advanced stages of the disease by the time they are finally diagnosed by right heart catheterization if proper action is not taken. Almost three-fourths of patients have advanced PH by the time they are diagnosed. The median survival rate without treatment is approximately 2.8 years, making the need to obtain a rapid and accurate diagnosis urgent. When patients are caught early in the disease (while still in Class I and II) they have improved chances for a better life and can often continue working. By considering PH, we can reduce average time between PH symptom onset and diagnosis, avoid inappropriately prescribed medications, and slow the progression of PH, securing an optimistic life for the patient.

Read some of the things the community shared below (click on the image to see a bigger version). Read diagnosis stories | Share our early diagnosis video


Tuesday, December 17, 2013

Main Character in New Novel Has Pulmonary Hypertension

Pulmonary hypertension patient Hannah Lahmeyer's friend wrote a fiction novel inspired by her with a main character who has pulmonary hypertension. Hannah says, "This book is a great way to help others understand our disease and to raise awareness."

Read more in Hannah's Generation Hope Blog post

New Mitochondrial Research Promising for PH

(Medical Xpress) Queen's University [in Canada] professor Stephen Archer's research has revealed that in serious human diseases (such as pulmonary hypertension, lung cancer, cardiac arrest and neurologic disease) the cell's power source, known as mitochondria, displays an abnormal structure.

Dr. Archer discussed his findings in a recent New England Journal of Medicine article.

"This explosion in the understanding of the once secret lives of mitochondria will almost certainly advance our understanding of an important mechanism for cell death and cell growth," says Dr. Archer. "This basic understanding offers new molecular targets for therapies of neurologic diseases, cancer and pulmonary hypertension."

Read the full article

Hospital in Rome Surprises Patient with Video for Birthday

Check out this video that the BG Hospital community in Rome made for a young PH patient living and waiting in the hospital for her second double lung transplant. They made it as a surprise for her 17th birthday.

AMIP, one of the Italian PH associations, adds this message: “We ask you to watch the video too, to post it on your Facebook pages, to send it to your friends. We'd like it to become viral on the web. This is a challenge, but nothing is impossible! While [watching] the video, send Giorgia a positive thought, a little prayer. At the end of the video she is telling us she loves us all!”

Monday, December 16, 2013

Attend FDA Workshops on Development of Treatments

The FDA is hosting a series of workshops on the development of treatments and related devices for rare diseases. Some of the sessions will focus specially on the pediatric rare disease community.  Interested individuals can attend by webcast or in person at the FDA’s Silver Spring campus.

Here’s an excerpt from the registration site:
On January 6-8, 2014 at our White Oak campus in Silver Spring, Maryland, the FDA will bring together experts from many fields to discuss and share ideas for how to enhance the rare disease community’s efforts in developing new, safe, and effective therapies for rare diseases.  We invite you to join us and learn more about many of the challenging issues related to the development of safe and effective medical products for adult and pediatric patients with rare diseases.

Sunday, December 15, 2013

Take Time for Yourself This Month


What are you doing for yourself this holiday season? How about stopping by the monthly patient telephone support call and taking a little time to chat with those who understand.  Join us a week earlier this month, Dec. 19 at 8 p.m. ET.

Video: Six Minutes of My PH Life

Awareness Month story
submitted by Kellie, PH patient

Kellie made the following video to raise awareness about pulmonary hypertension that she shared on Facebook and received over 100 shares. She says, "Even if it only reached one, I'm pass on [information about] PH!"

Watch the video below or on YouTube.

Saturday, December 14, 2013

Faces of PH: Lucas Van Wormer

“My greatest wish is to find a cure for all the types of PH so that no one, young or old, will have to go through life breathless.”

Hear more about 11-year-old Lucas’ story by watching his keynote speech at the PHA San Francisco Bay Area Chapter gala in November below or on YouTube.

Alex Flipse Organizes Painting and Walking for a Cure Events

Awareness Month story
submitted by Alex Flipse, patient in Silver Spring, Md.

This past November we had our annual Awareness Month! Awareness Month is always very fun for me because i love love love raising awareness for pulmonary hypertension! I went the extra mile this awareness month by having TWO fundraisers!

Read Alex's blog story

PHA Caregivers Telephone Support Group, December 18

Call in toll-free to connect, learn, and share strategies and experiences caring for an adult with PH.

December 18, 2013
1:30 pm ET/10:30 am PT

Caregivers Telephone Support Group
Call in toll-free to connect, learn, and share strategies and experiences caring for an adult with PH.  Call lasts one hour; we welcome you to join us for as long as you like.
Print a reminder postcard!

To Participate:
Call in toll-free from the U.S. or Canada:     1-866-221-8923
When prompted, enter access code:           349-951-0894
                                   

Friday, December 13, 2013

Superdome Lit for PH Awareness

Awareness Month story
submitted by Paula Lauto, PAH clinical research nurse in New Orleans, La.

We began development of our Facebook page LSUHSC-NO Pulmonary Hypertension Clinical Research - it's up but a work in progress. The focus is on education/knowledge.

On Nov. 19, Dr. Ben deBoisblanc and Dr. Matthew Lammi shared information on PAH on the local news.

On Nov. 18 and 19, we lit up downtown New Orleans for PAH. See the picture (right) of the New Orleans Mercedes Benz Superdome lit in purple for all our PAH heroes!

PH Patient Plans to Bike 3,000 Miles in Unity Miles Challenge

Riding a bike 3,000 miles is a feat for anyone – especially for a PH patient! Recently, PH patient Kathleen Richardson, kicked off a virtual fundraising challenge in support of the Race of Our Lives campaign. She is planning to ride 3,000 miles on bike by June 14, 2014 – and her goal is to raise $1 for every mile she rides!

Learn more about Kathleen and her virtual challenge to raise $3,000

Interested in starting your own virtual fundraising page to support the Race of Our Lives campaign? Learn more and get started

You’ve got a PHA PHriend in our PH Email Mentors!

Meet Evelyn, she’s been living with PH since 1999, she speaks both English and Spanish and she enjoys traveling and being active in her community.  Connect with Evelyn or any of our other PH Email Mentors as you navigate the twists and turns of your PH Journey.

Thursday, December 12, 2013

Get Experience and Support the Cause with a PHA Internship

Are you or someone you know looking for a college internship to gain experience in the workforce? PHA is currently soliciting applications for internships during the spring semester. PHA internships offer a wide array of opportunities, from marketing and health policy to event planning and lobbying Congress. PHA values its interns as contributing members of our team, and treats them as such.

Apply today and share with the college students you know

Last Chance – Caregivers, Tell Us What You Think!

PHA’s online survey for caregivers of adult PH patients is closing Sunday night. The survey only takes 10-15 minutes and will focus on current and future resources available to caregivers. This is your opportunity to tell us what new resources you would like to see here at PHA!  

Take the survey now.

'Tis the Season... to Connect with a Support Group

The end of the year is a great time to attend a support group. Most of our groups celebrate the season with end-of-year merriment and holiday parties, gift exchanges, dinners and raffles! If you haven’t ever attended a meeting, go to one this month and see what they’re all about!

Find a meeting | Find a group

Wednesday, December 11, 2013

Make a Gift to PHA and See It Double

PHA’s programs and services are funded by the generosity of community members like you. View PHA’s Catalog of Hope to see examples of the invaluable resources your gift will support. Right now, thanks to a matching gift challenge from Actelion Pharmaceuticals, the first $25,000 in donations will be doubled – so each donation has twice the impact!

Donate today

PHA Classroom: Learning on Your Schedule

Did you know that PHA Classroom is host to nearly 100 recordings! Classes cover topics ranging from information about living with PH, effective and communicating with your health care providers to recordings from our 2010 and 2012 International PH Conferences. It’s learning on your schedule.

PH Bill Has Six New Congressional Co-Sponsors Thanks to PHers' Outreach

PHers in front of the U.S. Capitol building in Washington, D.C.
To see more photos from PHA’s Congressional Luncheon,
visit PHA’s Facebook page.

The Pulmonary Hypertension Research and Diagnosis Act (H. 2073/ S. 1453) has six new co-sponsors thanks to the advocacy efforts of several PHers who visited their Members of Congress. Last month, PH patients, caregivers and medical professionals came to Washington, D.C., to attend PHA's Congressional Luncheon. Luncheon attendees from the PH community mingled with legislative staff, sharing stories about life with pulmonary hypertension and listening to remarks from leaders in the fight against the disease. After lunch, PHers met with legislative staff in their Representatives’ offices to request co-sponsorship of the Pulmonary Hypertension Research and Diagnosis Act.

Julia Feitner shared her thoughts about why she was excited to come to the Luncheon, “I chose to attend the Congressional Luncheon to have my voice heard. PH research has saved my life, and I wanted to do what I could to help further research and promote early diagnosis to help others patients. For me the best part of the event was ‘we the people’ participating in our government the way it was intended and speaking with our representatives about what’s important to us.”

Six Representatives were so moved by the stories Julia and others shared, they agreed to co-sponsor the PH Research and Diagnosis Act. Here’s a list of the most recent co-sponsors:
  • Rep. Gerald Connolly (D-VA)
  • Rep. Joe Courtney (D-CT)
  • Rep. Steve Israel (D-NY)
  • Rep. John Larson (D-CT) 
  • Rep. James Moran (D-VA)
  • Rep. Charles Rangel (D-NY)
  • Rep. Tim Ryan (D-OH)
Weren’t able to travel to Washington, D.C., to visit your Members of Congress? You can be part of PHA’s grassroots advocacy network, the 435 Campaign, no matter where you live! Let us know that you want to make a difference by educating your Members of Congress about PH. We’ll send you the resources you need to call, write or even visit your senators and representatives at their offices in your state. Contact Elisabeth to get started at ElisabethW@PHAssociation.org or 301-565-3005 x753.

Tuesday, December 10, 2013

Remembering Those We Have Lost

The holidays can bring great joy as we reflect on seasons past and seasons to come.  However, for those who have experienced the loss of a loved one, the holidays can be very challenging. Join us for a virtual candlelight vigil to reflect, share and discuss the loss of a loved one due to pulmonary hypertension. The call will be facilitated by Rev. Steve White, PhD.

Annual Candlelight Vigil
Thurs, Dec. 19, 2013
8:30 p.m. ET/5:30 p.m. PT

Register

Monday, December 9, 2013

Caregiver Shout-Out

"My sister has helped me through the worst times of my life: right before diagnosis when I was passing out, when I was starting Flolan, and during and after my divorce ... She has helped me see myself in a different light — a survivor instead of a victim."
Read more Caregiver Shout-Outs

Question of the Week: Winter Activity

Question of the Week: What is your favorite winter activity? Answer in the comments below.

Sunday, December 8, 2013

Susie Recruits Support to Sustain PH Programs

Susie Alvarez, a patient and support group leader from the greater Los Angeles area, shared her PH story at work and convinced 15 of her coworkers to sign up through the United Way workplace giving program to give to PHA monthly.

Learn more about workplace giving

Heart Rhythm Center Holds PH Awareness Day

PH Awareness Day story
submitted by Libby Stone, RN, CHFN, Heart Rhythm Center, South Miami Hospital

I am sending you a photo of some of our group patients from PH Support Group Awareness event. We celebrated with a cake, games and prizes. Everyone won a basket. It was fun. Our guest speaker,  PH patient Roxana Ponce shared her story from sickness to health as a message of hope.

Additionally, our hospital gave away purple ribbons for staff to wear during the month of November along with quick information card on PH and blueberry yogurt. We presented physicians with information at the echo symposium, and information about the lag time to diagnose the disease in their doctors lounge.

We had a good month thus far and look forward to our open house...of our new Pulmonary Hypertension Center here at the Heart Rhythm Center at South Miami Hospital. We are busy and our hospital is a buzz about pulmonary hypertension, once a foreign concept, an unknown disease. Thanks for all your support. 

Saturday, December 7, 2013

Barbara on Loretta McNary Show

BarbaraInMemphis reports that she was on the Loretta McNary Show again this year for PH Awareness Month. Check out the video below or on YouTube.

Pam Carner Tables at Local Hospitals

Pam Carner tabled at two hospitals in November for PH Awareness Month: Nov. 4 at Christ Hospital and Nov. 13 at the University of Cincinnati. She printed a Sometimes it's PH early diagnosis poster, which you can see in the below photo.


Friday, December 6, 2013

Find Parent-to-Parent Support

The next Parent Monthly Telephone Support Group call will take place on two dates: Dec. 16 at 11 p.m. ET/8 p.m. PT or Dec. 18 at 8 p.m. ET/5 p.m. PT.

It can be a struggle to balance everyone's needs when a member of the family has pulmonary hypertension. Join other parents to discuss how to maximize your family's coping and resiliency while living with PH. The call lasts one hour; join us for as much or as little time as you like.

Call-in details

PHA Staff Do the Chicken Dance

Cluck, cluck, cluck, y'all! As promised, because the PH community met the challenge to get our Facebook fan number over 10,000 by the end of PH Awareness Month, the PHA staff did the chicken dance!

Technical note: You'll want to turn your volume up for the beginning part with Rino.

Watch below or on YouTube.

Thursday, December 5, 2013

Race of Our Lives: East Coast Miles Sold Out!

Through the Race of Our Lives campaign, you can support Team PHenomenal Hope by sponsoring one — or more — of the 3,000 miles along the race route. We have officially sold out one region of the map — all 750 miles in the East Coast region have been sponsored. Help us sell out the rest of the race route in the Pacific Coast, West and Midwest regions.

Every mile counts!

Comunicando Acerca Su Hipertensión Pulmonar - Seminario Virtual la Próxima Semana

11 de diciembre, 8 p.m. ET/5 p.m. PT
Seminario Virtual: internet y teléfono
Registre ahora


En esta presentación virtual, Adriana González Guerrero, discutirá la importancia de comunicación acerca su hipertensión pulmonar. Lic. González Guerrero dará consejos que posibiliten establecer comunicación efectiva dentro de sus círculos sociales, incluyendo comunicación con sus colegas y jefe en su trabajo, con sus amigos y con sus hijos y novios en sus familias. Participantes podrán focalizar los recursos proveídos en esta presentación para comunicar efectivamente.

Webinar Tomorrow with Founders in the Field

Join us tomorrow at 1 p.m. ET/10 a.m. PT for a unique opportunity to hear from pulmonary hypertension experts considered to be among the founders of the modern PH field! This joint PHA Classroom and PHA Online University event is for medical professionals and patients alike. Dr. Stephen Mathai of Johns Hopkins University School of Medicine will interview our panel of pulmonary hypertension experts about the evolution of our understanding of the mechanisms and physiology of PH.

PANELISTS
  • Bruce Brundage, MD, St. Charles Medical Center - Bend
  • C. Gregory Elliott, MD, Intermountain Medical Center
  • Lewis Rubin, MD, University of California, San Diego, Thornton Hospital

Question of the Week: Awareness Month

Question of the Week: What did you do for Pulmonary Hypertension Awareness Month? Share in the comments below

Wednesday, December 4, 2013

PH Awareness Stocking Stuffers

The PHA Store has a number of items that would make great stocking stuffers, from a keychain, wristband and car magnet to pins and a plush toy. Purchase your stocking stuffers today

The Fight Continues

Pulmonary Hypertension Awareness Month has ended, but the fight is far from over. You can participate in PHA programs to raise awareness and funds for the cause year round. Whether it's regularly posting information to your online social media friends, organizing an event, sharing your story with a reporter or contacting your Member of Congress, PHA staff are at the ready to help you fight back in whatever way you are interested in. We also have online toolkits to help you along the way.

Learn more and get involved

Dr. Johri Raises PH Awareness with Doctors in Her Local Area

The main focus of PHA’s Sometimes it’s PH early diagnosis campaign is reaching out to physicians so they know what to look for and refer to a pulmonary hypertension specialist. Shilpa Johri, MD, at the Pulmonary Associates of Richmond took part in our Sometimes it’s PH campaign for PH Awareness Month by sending a flyer to physicians in her area about pulmonary hypertension, the need for early diagnosis and her practice’s information for referrals.

Encourage your PH doctor to do the same and reach out to the physicians in your local area. You can provide him or her with the www.SometimesItsPH.org website for more information and resources.

Tuesday, December 3, 2013

Education and PHriends at the N.C. PH Symposium

PH Awareness Month story
submitted by Kim Turner, patient in Rocky Mount, N.C.

I attended the 5th Annual N.C. Research Triangle Pulmonary Hypertension Symposium in Durham, N.C., on Nov. 8. I really enjoyed the presentations, seeing fellow patients, meeting the sponsors and talking with my PH doctor, Terry Fortin. The photo is of me and Dr. Fortin.

Share what you did for PH Awareness Month

Celebrating Life with the Breathe PHree Gala

Katie & Megan at the Breathe PHree Gala
from a guest blog by PHA staffer Megan Mallory on Empowered by hope: A PHA Diary, a blog by PHA President Rino Aldrighetti:

Five and a half years ago, I joined PHA’s staff in the publications department, my primary responsibility being to put Pathlight together each quarter. About six months into my new position, a young woman named Katie Tobias contacted me about writing for the newsletter. Katie was 23 at the time. As with so many of our community members, Katie had a remarkable story to tell.

Read the full story

Monday, December 2, 2013

Laura Spoonamore Raps about Pulmonary Hypertension

PH Awareness Month story
submitted by Laura Spoonamore, patient in Hamilton, Ohio

I wrote a little rap song about [pulmonary arterial hypertension] PAH and included my doctor, Dr. Peter Engel, and his nurse, Nancy. It was kind of impromptu. I tried to send it to The Ellen Show, hope it made it! This was my way to try and spread awareness.

Watch the video below or on YouTube

Give a Gift in the Spirit of the Season


Tomorrow is the second annual Giving Tuesday, a day that was added to the Thanksgiving holiday shopping weekend as a way for people to give in the true spirit of the holidays. This holiday season consider giving the gift of hope and support for the PH community by donating to PHA.

For the occasion, we have designed a holiday card to give the special person in your life who is receiving this gift. We also created the Catalog of Hope, which features examples of the programs and services your gift will support, such as:
  • A gift of $50 will provide four families with the PH Handbook for Families, which includes kid-friendly booklets about PH.
  • A gift of $135 provides one young medical professional just starting out in the field with a membership to PHA's PH Clinicians and Researchers medical membership group.
  • A gift of $500 provides the tech support for three months of one-on-one, email-based support through our PH Email Mentors program to a patient or caregiver.
To see more examples of how your gift will support PHA’s mission, view our Catalog of Hope.

Remember, donate for #GivingTuesday and your gift will be doubled. The first $25,000 in donations to our end of year appeal will be doubled thanks to a matching gift from Actelion Pharmaceuticals. So give the gift of hope and support for the PH community this year and double your impact.

PH in the News for Awareness Month

Pulmonary hypertension received some attention in the news for PH Awareness Month. Check out some of the coverage below:

On. Nov. 9, Lori Shaal and Carol Lindstrom were on the Omaha Morning Blend on their local CBS television station talking about pulmonary hypertension, the proclamation they received from Nebraska Governor Dave Heineman declaring November PH Awareness Month, and their PHenomenal Hope for a Cure Brunch. Watch the video

On Nov. 13, Meg Horne was featured on GoUpstate.com about her journey living with pulmonary hypertension, the work she does to raise awareness and the proclamation she received from Spartanburg Mayor Junie White. Read the article

On Nov. 13, The Jewish Voice did a story about the pulmonary hypertension forum held for healthcare professionals at Touro College in Harlem, New York, titled "Suspecting Pulmonary Hypertension in the Dyspneic Patient: Who, When, and How." Read the article

On Nov. 14, Barb Van Epps wrote a story in the Titusville Herald, a newspaper in which she is a regular columnist. She shared a first-person account of her story of life with PH as well as the Race of Our Lives bicycle team out of Pittsburgh Medical Center where she receives treatment racing across America in June 2014 to support PH. Read the article

Learn how you can share your story with reporters to get media coverage of pulmonary hypertension.

Managing your health



The Empowered Patient Online Toolkit helps you create your own medical binder for managing life with a chronic illness, including, but not limited to PH. Download the resources below, personalize them, and then either save them to an electronic flash drive or print them out and store them in a three-ring binder with tabs. Bring your binder with you to all appointments and any time you are admitted to the hospital. 

Sunday, December 1, 2013

Pulmonary Hypertension More Prevalent in HIV Patients

Today for World AIDS Day we highlight pulmonary hypertension associated with HIV. Those who are infected with HIV have roughly six to 12 times the occurrence of pulmonary arterial hypertension (PAH).