Friday, November 30, 2012

Faces of Pulmonary Hypertension: International PH Activists

In the U.S., pulmonary hypertension patients, families and professionals have many resources for support, information, education and awareness-raising. Yet PH strikes patients all around the globe. In some countries, smaller patient populations and fewer resources for them mean patients may be struggling to understand and cope with their illness alone.

Over the past three years, PHA’s Tom Lantos Innovation in Community Service Awards have helped fill this gap. The program, funded by Gilead Sciences, has granted small amounts of money to PH activists both inside and outside the U.S. to better organize, educate and support PH patients.

While most grants continue to be awarded to applicants in the U.S., grants to international applicants in 2012 were awarded in countries where leaders in PH will plan meetings for PH patients and professionals, planting the seeds of a more supportive and informed community.

Todor Mangarov, Organizing in Bulgaria
Grantee Todor Mangarov used his Lantos grant to hold a summer meeting inviting the country’s 40 patients to get acquainted with one another, learn about the disease and its treatment and discover ways to live with PH. Although PH treatment has become available in Bulgaria and the country’s health ministry now provides free care, patients, doctors and government health officials have not been unified to address the full range of patient needs. Without psychological help, information about PH and guidance on how to live with this illness, Bulgarian families are left with many fears. This summer’s meeting aimed to reassure patients that they are not alone, that help is available and that they may continue living positively even with PH. It was also an opportunity to discuss forming a PH Bulgaria association.

Abraham Babu, Promoting Exercise in India
Rehabilitation specialist Abraham Babu of India is using his grant to develop a manual about the importance of physical activity and exercise for PH patients. The manual will offer illustrations and instructions on specific exercises including a warm up, an aerobic training program and a cool down. Sections of the manual will also cover symptoms, medical tests, treatments, nutrition, tasks to do at home such as daily weight checks, and the importance of relaxation and connections with family and friends. The manual will be translated into various regional languages and will be a resource at home for patients who must travel long distances to PH care centers. It will be distributed to patients through PH physicians and rehabilitation specialists in India.

Hyuk-Jae Chang, Educating Public and Patients in Korea
Working with PHA Korea, formed two years ago, Dr. Hyuk-Jae Cheng’s Lantos grant underwrites strategies to raise the low level of PH awareness in Korea. Funds are being used to produce informational posters for display in hospitals, government, nongovernmental organizations and public institutions. Public relations activities will help convey the posters’ messages more widely. The grant is also funding a Korean language translation of PHA's newly updated Pulmonary Hypertension: A Patient's Survival Guide. The Survival Guide, first translated in 2006, was distributed to 2,000 patients and caregivers. Dr. Cheng reports that 1,200 PAH patients are being treated in Korea, but he estimates that 3,800 more remain undiagnosed.

Learn more about PHA's Tom Lantos Innovation in Community Service Awards

Sometimes it's PH in Hawaii

Pulmonary Hypertension Awareness Month Story
Submitted by: Elsa Dasigo, Honolulu, Hawaii, patient

The Hawaii Pulmonary Hypertension Association Support Group played a big part in raising PH awareness in Honolulu, Hawaii. Our support group was honored by our State Governor Abercrombie who signed a proclamation to proclaim November as PH Awareness Month. Also, in the same month we were also presented another proclamation by our Mayor of Honolulu.

Our support group had also set a date to raise awareness at one of our local hospitals in Honolulu. We spent a few hours at Queen's Medical Center and handed out information, PH brochures and pamphlets and also awareness bracelets and pins. One of our support group members created a display board (pictured right) and also ran a video clip from PHA on her iPad, which continued running throughout the time we were there.

Submit your Awareness Month story

Colleen Spreads Awareness at Her Local Hospitals

Pulmonary Hypertension Awareness Month Story
Submitted by: Colleen Schnell, patient, Niagara Falls, N.Y.

Usually during Awareness month, I try to educate every day on Facebook and my blog so that others can read about what PH is all about. This year, I thought I'd try to find out if two of my local hospitals would allow me to put up a display in their lobbies. Thankfully, both of them agreed!

I had a display at one hospital for about 4 days, and then 10 days at the other hospital. Much of the materials I had left on the table were gone by the time I came back to take down the display. This made me happy since I realized people actually stopped to take the time to read the board and find out more!

Share your Awareness Month story

Thursday, November 29, 2012

Proclamations, Media Coverage and Fun Walk in Memory of Mallory

Pulmonary Hypertension Awareness Month Story
submitted by: Lois Piper, Bloomington, Minn., family member of PHer

On January 3, 2011, we lost our beloved daughter, Mallory Hicks to pulmonary hypertension, a short 3 1/2 months after her diagnosis. In June of that year we held our first Miles for Mallory PH Walk in her memory. This year, we held our 2nd Annual Miles for Mallory PHamily PHun Walk on Oct 20 to incorporate November as PH Awareness Month.

We received a Proclamation from Governor Mark Dayton proclaiming November 2012 as PH Awareness Month in Minnesota. We also continued a tradition of presenting the Proclamation to a doctor who has tirelessly work for PH patients his whole career - Dr. Michael McGoon, and wife Bonnie McGoon who also works tirelessly to raise awareness. This was a part of our Walk around Lake of the Isles in Minneapolis, and spaghetti Luncheon. All to raise money and awareness. We had over 160 walkers and luncheon attendees.

The surprise came when just this week two local neighborhood newspapers printed articles and photos of our walk (The Wedge and Uptown Neighborhood News)! We were so excited about the success of our walk, and with the attention in the local media. We have made a huge leap to raise awareness!

Also-an added bonus was a letter from our U.S. Senator Amy Klobuchar supporting our efforts.

Support & Education at Luncheon Conference

Pulmonary Hypertension Awareness Month Story
Submitted by:  Douglas Knuth, Clinton Twp, Mich., patient on subcutaneous Remodulin

Editor's note: The event Douglas attended is the 11th Annual Luncheon & Conference in Novi, Mich. held by the local support group.

My thanks to Dr Samuel Allen, Jackie Brewer, RN, from the Beaumont Pulmonary Hypertension Center in Sterling Heights, Michigan, and Lori from United Therapeutics for presenting a luncheon and get together for PAH patients and caregivers on 11/10/2012.

Approximately 25 caregivers and patients, like myself, came together (some commuting rather long distances) for a great luncheon, but more importantly we all were able to see, meet and discuss with others who are dealing with many of the same problems we have. Being newly diagnosed myself, this was my first PAH get together. I met and spoke with about 5-6 people, but not all of the other patients, but we did each tell a little bit about ourselves during the course of the luncheon.

I noticed the diversity of the patients, men, women, some younger, some not younger, some still physically mobile, and some in wheelchairs. Different treatment plans for some -- I think I might have been the only Remodulin Subcutaneous patient there that day. I overheard a couple of patients discussing about issues such as finances and medical costs they were facing. I also related to those issues myself. I wish I would have thought to use my cell phone camera to take a few pictures.

If there is another luncheon in the future, I plan to do more mingling with the other patients. This was a learning experience for sure. Information packets about PAH were given out and discussed, as well as useful tools to help keep us moving and getting better. Everyone seemed to have a positive experience.

Thanks again...

Share your Awareness Month story

PHers Visit Capitol Hill, Advocate for PH Research

In 2012, PHA added a new twist to our annual Awareness Month Luncheon on Capitol Hill - we invited Support Group Leaders from different regions of the country to come early for a training and stay for the Luncheon. As a result, this year's event boasted the most diverse group of PHers and their loved ones ever.

Luncheon attendees from the PH community mingled with legislative staff , sharing stories about life with PH and listening to remarks from leaders in the fight against the disease. Speakers included Gary Gibbons, MD, the Director of the National Heart Lung and Blood Institute at NIH; Sen. Bob Case (D-PA), the sponsor of PH-specific legislation in the Senate; Dr. John Berger, a PH-treating physician from Children's National Medical Center-DC and Diane Ramirez, a PH patient and PHA Board Member. "When you come here as advocates… You should never underestimate the value and impact of these visits" Senator Bob Casey told the crowd.

After lunch, more than thirty PH community members from twelve states met with legislative staff in their Senators' offices to request co-sponsorship of the Tom Lantos Pulmonary Hypertension Research and Education Act and support for the National Pediatric Research Networks Act.

Wednesday, November 28, 2012

Webinar Tomorrow From Two Leading PH Physicians

Webinar for patients, caregivers and medical professionals...

Early diagnosis is a pressing new priority at the Pulmonary Hypertension Association. Find out from two leading PH physicians why early diagnosis is essential, how to screen for PH and what PHA’s Sometimes it’s PH campaign is doing to inform and educate more healthcare providers to spot PH early.

The webinar is hosted by the American Thoracic Society (ATS) in collaboration with PHA for ATS Pulmonary Hypertension Week Nov. 25-30.
Common Symptoms, Rare Disease: Early Diagnosis of Pulmonary Hypertension
Thursday, Nov. 29, 2 p.m. ET/11 a.m. PT
Lynn Brown, MD, PhD, University of Utah and Peter Leary, MD, University of Washington

Register now

Check out the Most Recent Issue of PHANews

Check out the most recent issue of PHANews to find out how PHers across the country are making a difference in the name of PH awareness and research. Keep up to speed on the latest news headlines, telephone support calls, educational webinars and more! Read PHANews

Last Chance for PHAmerica Honors Nominations

For Pulmonary Hypertension Awareness Month, Brenda Reynolds is holding her annual PHAmerica Honors Ambassadors contest. Submissions are due by the end of November. She is looking for submissions in the following categories.
  • PHAmerica Petites - 0-16 years.
  • PHAmerica Generation Hope - 17-39 years.
  • PHAmerica Prime - 40 yrs and older
  • PHAmerica PHellows - Men Only
  • PHAmerica Plus - Those with PH and any additional disease.
  • PHAmerica Pillars - Caregivers, Family, Friends (Must currently be caring for a PH Patient). Nominations accepted.
  • PHAmerica Rookies - Newly Diagnosed (less than 18 months)
  • PHAmerica Pucker Up Photo Contest - Blue Lips Photo ONLY contest. No essay required.
  • PHAmerica Remember Me - Photos and notes of those who have gone before. Not part of the contest.
View more information

Tuesday, November 27, 2012

Virtual Candlelight Vigil

For those who have experienced the loss of a loved one, the holidays can be very challenging. Join us for a virtual candlelight vigil on December 5, 2012 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.
Register now

Positive Outcomes from Having Pulmonary Hypertension, Really?!

We asked the PH community what positive things have happened to them because of their pulmonary hypertension. The positive changes include:

A greater appreciation for life. The community talked about how they had slowed down and live more in the moment. They enjoy the little things in life and appreciate what they have. They have also learned how to be positive and find the silver lining in things.

Different priorities. PHers are spending more time with their family and friends, growing closer to God and not taking things for granted. They don't sweat the small stuff anymore. Some were happy they were forced to stop working and slow down. Others talked about being forced to take better care of themselves through exercise and diet. One woman even shared that she had lost 183 pounds!

Stronger friendships and family ties. People often talked about how they've become closer with their friends and family through the support they give to them in their constant struggle with PH, and they learned who their true friends are. Many were thankful for their new PH friends, or "PHriends," including the medical professionals they have met.

Awareness of their inner strength. Many PHers talked about learning how strong they are and how PH has given them the strength and courage to face challenges.

Compassion for others. People expressed how they have a greater appreciation for the struggles others go through and they have a greater awareness and compassion for others.

More free time. PHers expressed gratitude for more time to spend with family and friends and work on hobbies.

The disability perks. A few PHers talked about the "perks" of having PH, such as closer parking spaces and the ability to get through Customs at the airport quicker.

The below quote from one of the community members best summarized the sentiments of the responses:
"PH Puts Priorities in Place! Non-threatening things that cause people so much stress seem foolish and shallow. You learn to live life a mile deep and an inch wide versus an inch deep and a mile wide. The highs are higher and the lows are lower. You experience life at a much higher level of awareness and learn what walking in Faith really means. The PHriends you meet quickly become closer than your friends that will never completely 'get it.' You become part of an exclusive PHamily and support one another, far and near, sharing the highs and offering encouragement during the lows."

This week's question of the week:  "The best piece of advice I would give someone newly diagnosed with pulmonary hypertension is..." Feel free to respond in the comments below.

Teens Talk about Pulmonary Hypertension

Teens with pulmonary hypertension talk about living with PH at PHA on the Road: PH Patients and Families Education Forum in Chicago, Ill., in Oct 2012.

Watch this short 7 min. video:

Monday, November 26, 2012

Bring in the Clowns!

Joy and Vern Gore hosted the “Let’s Breathe” Bullhead City Six Minute Marathon in Arizona on Nov. 10. The event was a lot of fun with the walk, a raffle, barbeque, clowns and education about pulmonary hypertension by Dr. Rajeev Saggar from St. Joseph Hospital and Medical Center in Phoenix.

The event brought in three new patient members for the local support group and attracted media attention. The Mohave Valley Daily News ran a story about the event and the proclamation they received from the Mayor the day before declaring Nov. as Pulmonary Hypertension Awareness Month. In all, the event raised more than $2,500 for PHA research.

Read the Mohave Valley Daily News article

Webinar Thursday: How & Why to Diagnose PH Early

Webinar for patients, caregivers and medical professionals...

Early diagnosis is a pressing new priority at the Pulmonary Hypertension Association. Find out from two leading PH physicians why early diagnosis is essential, how to screen for PH and what PHA’s Sometimes it’s PH campaign is doing to inform and educate more healthcare providers to spot PH early.

The webinar is hosted by the American Thoracic Society (ATS) in collaboration with PHA for ATS Pulmonary Hypertension Week Nov. 25-30.
Common Symptoms, Rare Disease: Early Diagnosis of Pulmonary Hypertension
Thursday, Nov. 29, 2 p.m. ET/11 a.m. PT
Lynn Brown, MD, PhD, University of Utah and Peter Leary, MD, University of Washington

Register now

Show Your Support on Giving Tuesday Tomorrow

The Pulmonary Hypertension Association is excited to be a part of the first ever #givingTuesday, a campaign to create a national day of giving at the start of the annual holiday season celebrating & encouraging charitable activities that support nonprofit organizations. It is taking place tomorrow, Nov. 27.

Learn more and get involved in #givingTuesday

Friday, November 23, 2012

Manicure for Pulmonary Hypertension

Pulmonary Hypertension Awareness Month Story
Submitted by: Diane Roberts

Hello all - I am the mom to the most amazing little boy I ever had the privilege of knowing - Ryan "Superman" Roberts. Ryan lost his short battle with PH on July 8 (he was known as the "banana split baby" to many).

In memory of Ryan and knowing that Pulmonary Hypertension Awareness Month is [this] month, I am donating all of my "commission" from my Jamberry Nails business. I will also be sporting one of the "symbols" of PH - the zebra and appropriately it is purple in color (see picture right).

If anyone is interested in purchasing Jamberry please feel free to check out my link - if someone would like to spread the word and have an online party please feel free - I will donate all my commission to the PH Association in memory of Ryan and also the strongest little girl I knew and when we first heard of PH - Molly (@Kristen Porstman Dunne).

Join me in sporting the purple zebra (for the record I DESPISE the color purple - and pink - but will wear it for those suffering with PH) or other purple colors even.

Share your Awareness Month story

Catch PH Awareness on the Radio in Los Angeles Area

An interview with Dr. Juan Carlos Alejos about pulmonary hypertension will be featured in the Los Angeles and surrounding areas on Sunday, Nov. 25 at 5:30 a.m. PT on the following radio stations: KKGO 105.1 FM, KKJZ 88.1 FM and KMZT 1260 AM.

The program will also be streamed on the stations' websites at:, and

The radio spot is a direct result of pulmonary hypertension patient Alex Flipse raising awareness. She also secured an article in the Capital Gazette. Read article

Thursday, November 22, 2012

Blue Lips in Memory of Father

Pulmonary Hypertension Awareness Month Story
Submitted by: Wendy, Vine Grove, Ky., widow

It is hard to believe that it has been two and a half years since we lost Brandon. The children and I have had our ups and downs but seem to be coping better. In honor of their father, the kids donned blue lips (we had seen a campaign for it awhile back) for National Pulmonary Hypertension [Awareness] Month. I just thought I would share the best picture out of the bunch.

Share your Awareness Month story

Faces of Pulmonary Hypertension: Silviabb Galvan

"Since about 4 years ago, I started to feel an extreme fatigue. Since I was diagnosed at 12 with Reynaud’s, I have always associated any strange symptom with that disease. Then in March of 2009, I had pneumonia that I almost didn’t notice and thus took a long time to recover."

Read Siviabb's full story | Lea en español

Wednesday, November 21, 2012

PHA Office Closed Thursday & Friday for Holiday

PHA's office will be closed Thursday, Nov. 22 and Friday, Nov. 23 for the Thanksgiving holiday.

A Vision of Hope in Maryland

Volunteer organizers held their 2nd Annual Vision of Hope Gala in the Baltimore area of Maryland on Nov. 3, and it truly provided a vision of hope. With a sit-down dinner, educational speakers, a raffle, and test your PH knowledge game show, the highlights of the evening were pulmonary hypertension patient Regina O’Neal and the Waxter Dancers.

Regina gave a rousing speech about the power of positive thinking and focusing on what you have rather than what you have lost that spoke to everyone, not just PH patients adjusting to their new normal. The Waxter Dancers are a senior line dancing group who were a lot of fun to watch and inspirational, especially one man with a cane (pictured right in the back row) who was told he would never dance again after a car accident years ago.

In all, the event had 125 attendees and a net fundraising total of nearly $18,000, which will directly support PHA’s Research Program. A special thanks to event organizer and support group leader Nicole Cooper.

Organize your own special event | Submit your Awareness Month story

Say Cheese! PHers Use Photos to Raise Awareness

We reported earlier this month about how the PH community is using images of zebras to raise awareness for the Sometimes it's PH early diagnosis campaign. PHers are using images to raise awareness in a number of other ways as well.

Smiles for Shaye shared this photo on Facebook raising awareness about what young PHer Shaye's life is like with pulmonary hypertension.

Steve Van Wormer posted this photo of himself on Facebook with the simple message to go to PHA's website.

Alex Flipse uses images on a regular basis through highlighting "PH Warriors" and using various awareness raising messages and images. For Awareness Month she organized an event on Facebook where the PH community could "Take a Pic for PH Awareness" that had 200 participants. A couple of Alex's images are below and you can view the photos PHers posted on her event.

Tuesday, November 20, 2012

Patient Travels 90 Miles for Fresno Event

To a person living with pulmonary hypertension, six minutes of exercise can sometimes feel like a marathon...

Volunteer organizers held the Fresno Six Minute Marathon on Nov. 4 raising awareness and more than $2,600 for PHA research and patient-serving programs. Event Chair Perry Mamigonian had this to report:
“It was a perfect day! We had more than 70 people show up, the weather was beautiful, the food was great, and everyone enjoyed themselves. We even had a young couple bring their pediatric patient daughter from 90 miles away. Her mother told me she found out about our event on the Internet on the PHA website and decided to come at the last minute because they have no support groups where they live.”

Find Support Near You

Knowledge, support, hope and empowerment: just a few of the things a PHA support group can offer pulmonary hypertension patients. No one should face this disease alone.

Find a local support group

What Are You Doing for Awareness Month? Share Your Stories

We've heard and shared so many great stories about what you the PH community has been doing for Pulmonary Hypertension Awareness Month. We'd love to hear more! Send us your stories, long or short, it can even be just a photo with a caption. The month isn't over yet, so keep up the great work!

Submit an Awareness Month story

Monday, November 19, 2012

Scleroderma Research Update

In this video from the Scleroderma Foundation's 2012 National Patient Education Conference, a panel of scleroderma researchers discuss advances in research, ongoing clinical trials, how research developments are brought from bench to bedside and future projects and initiatives.

Watch this hour-long video update

Events Coming Up this Weekend in N.C. and Texas

Join us for the following fun events this coming weekend!

North Carolina

Friday, Nov. 23
Zumbathon for PH
Mebane, N.C.
Learn more and register

Sunday, Nov. 25
Six Minute Walk for PH
Haw River, N.C.
Learn more and register


Saturday, Nov. 24
Harker Heights Six Minute Marathon
Harker Heights, Texas
Learn more and register

First Annual PH Marathon Deemed a Success

(Mohave Balley Daily News) - Community members, along with those diagnosed with pulmonary hypertension, dedicated part of their Saturday afternoon to a good cause by attending the first annual “Six Minute Marathon” held at the Bullhead City Junior High. Read article

Watson to Sell Generic Version of Pfizer's Revatio

(BloombergBusinessseek) - Watson Pharmaceuticals Inc. said Monday it received approval to sell a generic version of Pfizer Inc.'s drug Revatio, a treatment for pulmonary arterial hypertension. Read article

Friday, November 16, 2012

Living with Pulmonary Hypertension - The Bad and the Good

This past week we asked patients what they dislike most about living with pulmonary hypertension. Some said carrying around oxygen and medications, changing their medication site, and new limitations on activity.  Others mentioned fatigue, difficulty breathing and financial insecurity. Looking over the responses, one thing became clear -- you are not alone in coping with these challenges. Many others face similar issues. Below we offer some resources to help you cope.

This coming week in the spirit of Thanksgiving we want to ask what positive things have happened to you because of your PH. Maybe it's a better appreciation of life, time with the family, finding support in new friends in the PH community. Please share your thoughts and experiences in the comments below.


Public Health Association Endorses PHA Initiatives

The American Public Health Association, a large organization of diverse health professionals, has expressed its support for Pulmonary Hypertension Awareness Month and the Sometimes it’s PH campaign for early diagnosis. This endorsement came in a Nov. 9 letter signed by APHA Executive Director Dr. Georges C. Benjamin. The Sometimes it’s PH campaign was also featured in APHA’s member e-news during our Awareness Month. These opportunities arose thanks to Laura D’Anna, an APHA member and the immediate past chair of the PHA Board, who cultivated the APHA–PHA relationship and will continue to build more key alliances as a member of the Sometimes it’s PH Strategic Partnerships Committee.

The letter from Dr. Benjamin stated: “Physicians once described PH as rapidly fatal. Today they consider it treatable, with nine medications available – an extraordinary number for a rare condition. Yet healthcare professionals can only save and extend the lives of pulmonary hypertension patients if they know when to suspect a PH diagnosis, how to screen for PH and where to collaborate with highly specialized PH providers for optimal care. This knowledge is often lacking in American healthcare…

“PHA’s new initiative for early diagnosis, Sometimes it’s PH, highlights this problem and provides the education to solve it. APHA endorses this comprehensive effort and PHA’s leadership in this mission of improving outcomes for PH patients is an important contribution to public health.”

Faces of Pulmonary Hypertension: Aggie Stefanelli

"I had been telling my primary doctor that I just didn't feel right and couldn't really take a nice, clean deep breath. He always said it was anxiety or menopause, so he put me on anti-anxiety meds."

Read Aggie's full story

Coping During the Holidays for Caregivers

Caregivers! Carve out a little time for yourself next week to join us on the Caregivers Telephone Support Group. We'll be discussing tips for coping during the holidays.

Find out how you can participate

Thursday, November 15, 2012

Awareness Month News Coverage of Pulmonary Hypertension

Here in PHA Daily Beat we have reported on a number of articles that have been run in the press about pulmonary hypertension that community members have pitched to reporters, particularly coverage of special events. Here are a few more articles PHers have secured, including in some large outlets:

PH South Africa was featured in an article in the Town Captain with information about pulmonary hypertension. Read article

Maria Martuccio and her friends were in the background on the Today Show for two minutes. See photo right

A young man tells his story of diagnosis and the need for awareness about pulmonary hypertension on CNN iReport. Read his story

The article appeared in the Healthcare Journal of New Orleans after communicators at PHA and the Ochsner Health System, home of a PH center in New Orleans, teamed up to use a presentation to respiratory therapists as an opportunity to more widely share the message of early diagnosis among health professionals. Read story 

This Canadian television piece ran on Global TV Edmonton before PHA Canada's Walk for Breath.

Mini McNiff the Pulmonary Hypertension Awareness Bear

Sean and Britt McNiff created a pulmonary hypertension awareness bear named Mini with pipe cleaners, plastic and a tiny backpack to show how invasive the pump is and educate about PH to kids and parents.

Share what you're doing for Awareness Month

Cathy Raises Awareness through Jewelry

Pulmonary Hypertension Awareness Month Story
Submitted by: Cathy, patient, Falmouth, Mass.

I was diagnosed 18 months ago with pulmonary hypertension. Living in a small town I couldn't find anyone else that had this disease and then realized I couldn't find anyone that had ever heard of it. I tell my story to everyone I meet, but I wanted a way to draw people's attention to it. I found a small local company who makes awareness bracelets for my different things. I contacted her, and she made a few different PH bracelets for me. Now people ask me what my bracelet represents. She offers them for sale through her website and will donate a percentage of her sales to PH.

Purchase bracelets (purchase via email or phone and tell her you want the PH bracelet)

Wednesday, November 14, 2012

Respiratory Professionals Learn About Pulmonary Hypertension Early Diagnosis

Lori Oppenheimer, PHA allied health program associate, and Linda Gates recently celebrated Awareness Month by exhibiting at the American Association of Respiratory Care in New Orleans. Linda's perspective on what the "Sometimes it's PH" early diagnosis campaign means for pulmonary hypertension patients like her was especially well received by the respiratory professionals.

PHers in Motion: Zum, Zum, Zumba!

Pulmonary hypertension patient and PHA board member Colleen Brunetti held her 2nd Annual Zumbathon for PH last Friday. The Zumbathon sold out, with 50 participants dancing in a Zumbathon class led by five volunteer instructors who generously donated their time and services. Even before the event took place, it had already raised $5,000 for PHA’s research and patient-serving programs.

Earlier this month, Colleen appeared in an article published by The Canton News, promoting her then-upcoming event. Read the article

Afterwards, Colleen was excited to share with PHA about how well the event went. This is what she had to say…
“The Zumbathon was a great success!

50 participants and 5 instructors were treated to a complementary raffle, listened to a brief overview of PH, danced for about 75 minutes, and finished off with refreshments and lots of photo ops. Participants took home gift bags with literature on PH and the Zebra [Early Diagnosis] Campaign, as well as a few treats. About 15 people later gathered at a local wine bar for a post-event toast.

With the guidance of PHA staffer Joshua Griffis, several attendees also signed letters requesting [U.S. Congressional] co-sponsorship for the [Tom Lantos PH Research and Education Act] bill.”

Photos courtesy of Amharc Photography.

Host your own special event, large or small | Share your Awareness Month stories

Traveling This Holiday Season? Bring Your PH Documentation

Travel requires advanced planning if you have pulmonary hypertension. Use the Empowered Patient Online Toolkit to store information about your travel destination and any documentation you'll need while traveling, such as letters from your doctor about your disease and medication.

Go to the Empowered Patient Online Toolkit

New, Non-invasive Test May Help Diagnose Pulmonary Hypertension in Scleroderma

(Hospital for Special Surgery) - The current gold standard test for PH in scleroderma is called right heart catheterization (RHC). Other standard, noninvasive screening methods are limited in their ability to distinguish between SSc patients with and without PH. The existence of an accurate, noninvasive technique to screen for PH in patients with SSc is an important unmet need. A recent collaboration involving HSS experts in SSc and Weill Cornell experts in PH shows promising early results for such a new diagnostic tool. The test is called SHAPE™. Read article

Tuesday, November 13, 2012

Show Appreciation for Your Caregivers This Month

November is also Caregiver Appreciation Month! Read Caregiver Shout-Outs submitted by the PH community and submit your own!

Visit caregiver shout-outs

"Well, Hold Me Back!" Says Merle Reeseman

Pulmonary Hypertension Awareness Month Stories
Submitted by: Merle Reeseman, patient, support group leader and advocate

I just received a call from an aide to State Representative Carolyn Dykema stating that she is in the process of having November named Pulmonary Hypertension Awareness Month in the Commonwealth of Massachusetts. They have contacted the office of the Governor and just keeping me up dated.

My brother and sister-in-law visited just over a week ago and my sister-in-law attended the Health Expo that Representative Stevenson puts on each year and I have a "table." That was also the day he presented me with the proclamation from the Commonwealth of Pennsylvania about November being named PH Awareness Month in PA... My brother asked for a copy of it and made an appointment with Rep Dykema. :D

I had a very nice conversation with the aide and Rep Dykema will also speak to the Congressperson and ask for co-sponsorship for HR 1810 (my brother is also working on that).

Just had to share the news.  Another "WELL, HOLD ME BACK"

Get involved in Awareness Month | Share your Awareness Month story

Enter to Win Conference Theme Contest

PHA needs your help! We are looking for an inspirational and unique theme for our 11th International PH Conference and Scientific Sessions which will take place in Indianapolis, Ind., June 20-22, 2014. The winner of the Conference Theme Contest will receive a complimentary registration to the Conference.

Deadline for ideas submission is Dec. 15, 2012. Learn more about how to submit ideas

Monday, November 12, 2012

Four Ways to Keep the Holidays Special Despite Pulmonary Hypertension

Lots of people complain of holiday stress as they fill the weeks of November and December with cooking, decorating, gift-giving and more. Yet these high-energy preparations are even harder with pulmonary hypertension. To work around your illness and still enjoy this season, try these four tips PHA gathered from PH patients through Facebook and email.

Simplify: Gail Bucchi loves holiday activities but has made some changes, like cutting down her holiday card list and using fewer decorations. Lori Funk shared on PHA’s Facebook page that she bakes with her children using cookie mixes and prepared pie crusts to save time and reduce cleanup. The time spent together is what really matters to her, she said. Lori also avoids crowds at the stores by shopping early on weekdays.

Plan ahead: Also on Facebook, Clarissa Lamont recommended advance planning and doing the work gradually so the holiday itself will be a relaxing time with family. Linda Gates enjoys using carefully chosen decorations to set up an elaborate Christmas village at home, but she starts right after Thanksgiving. Pacing herself over several weeks makes the job manageable.

Shop online: Buying gifts online is a popular tip with several PH patients. Shopping from home and having purchases delivered is hard to beat. As Tammy Gray noted, online shopping also means you don’t have to go out as much in the cold.

Delegate: Janet McGuiness Pierce has learned that others can do the work, including helping make her favorite recipes. Melanie Kozak hosts Thanksgiving dinner, but her extended family comes over to get the house ready ahead of time.

With some thought, some help and a few sparks of ingenuity, you can continue to enjoy the best of your holiday traditions in spite of your PH.

Editor's note: The above were the answers from the PH community to last week's Question of the Week. 
This week's Question of the Week -- Please finish the following sentence: What I dislike most about living with pulmonary hypertension is...

56 State & Local Governments Proclaim Nov. PH Awareness Month

As of November 12, PHers in the U.S. have garnered 56 proclamations declaring November Pulmonary Hypertension Awareness Month from state and local governments across the country! Michelle Holden, from Florida gathered 34 of those proclamations and is well on her way to making it to her goal: 50 proclamations from government officials this November. You can see the full list of proclamations below as well as who secured them.

While the proclamations themselves raise awareness, some have gone one step further to use these proclamations to gain media coverage. Jen Cueva from Texas mentioned her proclamation from the Governor of Texas in a letter to the editor in the Galveston Daily News, and Kelley Skumautz in Minnesota wrote about a proclamation from the Governor of Minnesota in her neighborhood newsletter.
  • Los Angeles, Calif., Michelle Holden
  • San Diego, Calif., Michelle Holden
  • Washington, D.C., Alex Flipse
  • State of Minnesota, Lois Piper
  • State of Florida, Michelle Holden
  • Florida Congressman Bill Posey, Michelle Holden
  • Cape Canaveral, Fla., Michelle Holden
  • Cocoa, Fla., Michelle Holden
  • Daytona Beach, Fla., Michelle Holden
  • Debary, Fla., Michelle Holden
  • Fort Lauderdale, Fla., Michelle Holden
  • Fort Pietce, Fla., Michelle Holden
  • Gainesville, Fla., Michelle Holden
  • Hollywood, Fla., Michelle Holden
  • Homestead, Fla., Michelle Holden
  • Howry, Fla., Michelle Holden
  • Jacksonville, Fla., Michelle Holden
  • Key West, Fla., Michelle Holden
  • Melbourne, Fla., Michelle Holden
  • Miami Springs, Fla., Michelle Holden
  • Miami, Fla., Michelle Holden
  • Ocala, Fla., Michelle Holden
  • Orlando, Fla., Michelle Holden
  • Palm Bay, Fla., Michelle Holden
  • Pensacola, Fla., Michelle Holden
  • Plantation, Fla., Michelle Holden
  • St. Augustine Beach, Fla., Michelle Holden
  • Tallahassee, Fla., Michelle Holden
  • Vero Beach, Fla., Michelle Holden
  • West Palm Beach, Fla., Michelle Holden
  • State of Hawaii, Elsa Dasigo
  • Honolulu, Hawaii, Elsa Dasigo (pictured above)
  • State of Maryland, Alex Flipse
  • Kensington, Md., Alex Flipse
  • Montgomery County, Md., Alex Flipse
  • Takoma Park, Md., Alex Flipse
  • Governor of New Hampshire, Emily Maio
  • Hazelton, Penn., Michelle Holden
  • Lehighton, Penn., Michelle Holden
  • Nanticoke, Penn., Michelle Holden
  • Norfolk, Penn., Michelle Holden
  • Palmerton, Penn., Michelle Holden
  • Scranton, Penn., Michelle Holden
  • State of South Carolina, Meg Horne
  • Easley, S.C., Meg Horne
  • Greenville, S.C., Meg Horne
  • Greer, S.C., Meg Horne
  • Lyman, S.C., Meg Horne
  • Spartanburg, S.C., Meg Horne
  • State of Texas, Marcia Beverly
  • Carrollton, Texas, Marcia Beverly
  • Coppell, Texas, Marcia Beverly
  • Corpus Christi, Texas, Michael Rivera
  • Ellis County, Texas, Marcia Beverly
  • Farmers Branch, Texas, Marcia Beverly
  • Flower Mound, Texas, Marcia Beverly
  • Virginia Beach, Va., Michelle Holden
Request a proclamation from your state and local governments

PHA’s Monthly Patient Telephone Support Group on Thursday

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. The next meeting is Thursday, Nov. 15, 8 p.m. Eastern Time.

Register now

UC San Diego Sulpizio Cardiovascular Center Program Receives National Recognition

(UC San Diego Health system) - The physicians, surgeons and team members who pioneered the lifesaving pulmonary thromboendarterectomy (PTE) procedure at University of California, San Diego Health System are being honored for excellence at the annual CHEST conference, hosted by the American College of Chest Physicians, in Atlanta, October 20 to 25, 2012.  Read article

Drug Helps in Two Types of Pulmonary Hypertension

(MedPageToday) - Treatment with a first-in-class drug called riociguat was effective against two types of pulmonary hypertension, according to phase III study results presented here. Read article

Friday, November 9, 2012

Sean Wyman Displays His PH Pride

Pulmonary hypertension patient Sean Wyman created a window display for his university bookstore at Western University of Health Sciences for PH Awareness Month. Take a look below!

What are you doing for Awareness Month? Send us your stories and photos

Six Minute Marathon in Washington State Nov. 17

Our full calendar of Awareness Month special events continues...join us next Saturday, Nov. 17 for a "Six Minute Marathon" in Puyallup, Wash. All are welcome! For more information, check out our events calendar. Hope to see you there!

Holiday Inspiration: Promote Early Diagnosis to Your Holiday Card List

Support group leader Joyce Hill of Ormond Beach, Fla., has found a simple way to advocate for early diagnosis with her holiday mailing to friends and family. Joyce, who was misdiagnosed with rheumatoid arthritis for 10 years, has made copies of our latest Pathlight article on the Sometimes it’s PH early diagnosis campaign, added Christmas stickers, and will send the article instead of a holiday greeting. Holiday cards, photos and letters typically get plenty of attention, so why not follow Joyce’s lead and send a PH message to your friends and family while they are reminded of you this December?

Thursday, November 8, 2012

Alex Flipse Makes Her Voice Heard in the Halls of Government

Pulmonary Hypertension Awareness Month Stories
Submitted by: Alex Flipse, Silver Spring, Md., patient and advocate

This awareness month, I have received five proclamations. I'm very excited and proud of this, not because they were hard to get, but I took the initiative and got them all. My favorite proclamation was from the mayor of Washington, D.C. It's really pretty :-)

Besides Washington, D.C., I've received proclamations from:
  • Town of Kensington, Md.
  • Takoma Park, Md.
  • Montgomery County, Md. (pictured right)
  • State of Maryland
Besides proclamations, I have been to the Baltimore Fun Walk and the Vision of Hope Gala. Both were so amazing!! I'm really looking forward to the Congressional Luncheon (on Tuesday) and lobbying! :-)

Whether or not you are attending PHA's Congressional Luncheon on Tuesday on Capitol Hill, please invite your Members of Congress to attend.

Faces of Pulmonary Hypertension: Lorena Dávila Hernández

"My name is Lorena Dávila Hernández, and my story with diagnosed pulmonary hypertension started May 29, 2006. Obviously by this date I had already presented with almost all the symptoms and honestly I have no idea how or when they started; the only thing I know is that I felt that I tired easily and that I was a little short of breath, but I didn’t pay attention and simply thought it was because I was gaining weight, and just went from there."

Read Lorena's full story | Leer en Español

Wednesday, November 7, 2012

Flurry of Activity in Texas for Awareness Month

Texas PHers are doing all sorts of awareness-raising this month. This past Saturday volunteer organizers held their 6th Annual North Texas Zebra PHriends 5K & PHun Walk with about 500 attendees and raising over $12,000 for PHA’s research and patient and family serving programs. Before the event they were on Good Morning Texas (video below) talking about pulmonary hypertension, how the zebra represents PH and their then upcoming event. The FinishLine band, who played at their Zebra PHriends event, also came out for the Good Morning Texas spot along with PHers all dressed in zebra stripes.

Other awareness raising activities coming out of Texas are fun radio PSAs using the zebra, an article in the Galveston Daily News and proclamations declaring November Pulmonary Hypertension Awareness Month by the Governor of Texas, Carrollton, Coppell, Ellis County, Farmers Branch, Flower Mound and Friendswood, Texas.

Watch the Good Morning Texas clip:

Get involved in Awareness Month | Share your Awareness Month story

Share Your Awareness Month Stories and Photos

What have you been up to for Awareness Month? Send us your stories, news articles in the media, proclamations, short anecdotes, photos, videos, etc. We would love to share these with the entire community so they can share in the excitement.

Share your stories & photos

Tuesday, November 6, 2012

Webinar on Exercise Offered by Cyclists for Pulmonary Hypertension

Four intense women cyclists from Pittsburgh have formed Team Phenomenal Hope, dedicating a 2014 cross-country bike race to PHA for fundraising and awareness. This weekend on Saturday, Nov. 10 at 11 a.m. ET, the team offers PHers a free webinar on principles of exercising with pulmonary hypertension. Learn from the University of Pittsburgh Medical Center (UPMC) Pulmonary Rehab staff and bike team members, including UPMC PH physician, Dr. Patty George.

Learn more about the team | Register for the exercise webinar (click on "Workshops & Events")

Zebras in Minnesota?!

Awareness Month Stories
Submitted by: Stephanie Layer, Maplewood, Minn., patient and support group co-leader

Pulmonary hypertension awareness is being spread throughout Minnesota!

It started with the Miles for Mallory PHamily PHun Walk on Oct. 20 with 160 attending, and the proclamation from Governor Mark Dayton recognizing November as PH Awareness Month. That proclamation was presented to Dr. Michael McGoon from the Mayo PH clinic in Rochester, Minn.

Today, November 1, we had tables set up at United Hospital in St. Paul, Minn. We used the zebra theme. There were eight of us -- patients, pharmaceutical reps – and we all had something zebra on. Shirts, hats, socks, scarfs, purses, beach towel – even a stuffed zebra. We had so many people coming to the tables to ask what is the zebra thing? We handed zebra buttons out to everyone we talked to.

We also had a drawing for a $20.00 gift card that was donated to our cause, and of course we brought in a lot with the trays of cookies that United Therapeutics supplied for us. We believe whatever it takes to get them to come over to our table, then we give them tons on education about pulmonary hypertension.

So many people said they knew someone who was out of breath. We hope maybe we might have helped someone out there. I believe we got out a lot of pulmonary hypertension information to the public, but also to many medical employees.

We are going to continue to have a table next week at Abbott Northwestern Hospital in Minneapolis, Minn. on Nov. 8.

Learn more about tabling in your community | Submit your Awareness Month story for posting

Adolescent Issues and Self-Esteem Building Nov. 15

Growing up with pulmonary hypertension can be tough. Parents, join us for a discussion on Nov. 15 about common adolescent issues impacting youth ages 10 – mid-20s, such as puberty, dating and self-esteem, and how they relate to your child’s PH, transition to independence and living with pulmonary hypertension.

Register today for PHA's Parent Telephone Support Group Meeting

Monday, November 5, 2012

Special Events Coming Up This Week in AZ, CT, FL, MD and Ontario

There are five special events coming up this week. Walk, dance, drink and bet for a cure!

Saturday, Nov. 10
"Let's Breathe" Bullhead City Six Minute Marathon
Bullhead City Junior High School, Bullhead City, Ariz
Learn more and register

Friday, Nov. 9
2nd Annual Zumbathon for PH
Valley Ballet Dance Fitness, Canton, Conn.
Learn more and register

Saturday, Nov. 10
5th Annual South Florida PH Funwalk
Herb Skolnick Community Center at the Palm Aire Country Club, Pompano Beach, Fla.
Learn more and register

Saturday, Nov. 10
4th Annual Pulmonary Pints: Pubcrawl for PH
No Way Jose, Federal Hill, Md.
Learn more and register

Ontario, Canada
Saturday, Nov. 10
"Let Me Breath" - A Vegas Fundraiser
Brebeuf College, Toronto, Ontario, Canada
Learn more and register

RSVP for Congressional Luncheon by Tomorrow!

PHA’s free Luncheon on Capitol Hill is just one week away on Tuesday, Nov. 13. Tomorrow is your last chance to RSVP!

Learn more and RSVP today

Question of the Week: Your Holiday Plans and Pulmonary Hypertension

Please finish the following sentence:

For the upcoming holidays, I plan to work around my pulmonary hypertension to make my celebrations special by…

New Treatment in Clinical Trial at Cleveland Clinic May Vastly Increase Number of Donor Lungs

(The Plain Dealer) - In a lab at the Cleveland Clinic, underneath what looks like an oversized plastic cake dome, a pair of human lungs sit, tethered to tubes and hoses. They are among the 80 percent of donated lungs deemed unsuitable for transplant -- damaged or infected or simply waterlogged from prolonged resuscitation attempts -- a situation that has led to a chronic shortage of suitable organs and a steady waiting list. Read article

Microscopic Packets of Stem Cell Factors Could be Key to Preventing Lung Disease in Babies

(The Sacramento Bee) - Researchers at Boston Children's Hospital have found that microscopic particles containing proteins and nucleic acids called exosomes could potentially protect the fragile lungs of premature babies from serious lung diseases and chronic lung injury caused by inflammation. Read more

Friday, November 2, 2012

Pulmonary Hypertension Awareness Went Global Yesterday!

To kick off PH Awareness Month, the pulmonary hypertension community worldwide celebrated PH Online Awareness Day yesterday. There were 606 PHers who RSVP'ed to PHA or our international partners in the United Kingdom and South Africa, who held events online in conjunction with our efforts.

Information about pulmonary hypertension was shared through education, photos, videos, personal stories, blogging, emailing friends, and sharing information about the special events coming up this month. There were a lot of posts that used our zebra theme and messaging from Sometimes it's PH: An Early Diagnosis Campaign. The community has really taken the zebra and run with it. You can see the zebra themed awareness image below that was posted by the Latin American health awareness group Concientización De La Salud.

Thursday, November 1, 2012

Miles for Mallory Raises Awareness, Funds and Support in Congress

Lois Piper, Mallory Hicks’ mom and a volunteer organizer of the 2nd Annual Miles for Mallory PHamily PHun Walk in Minneapolis, Minn., sent the below follow-up report about their day.  As of October 19, their event had raised over $11,000 for pulmonary hypertension research and patient services.
On Saturday, October 20, we held the 2nd Annual Miles for Mallory PHamily PHun Walk in Minneapolis, Minn. Over 160 walkers turned out on a cool, foggy Minnesota fall morning at Lake of the Isles in Minneapolis. The walk is held in memory of Mallory Hicks, who lost her battle with PH a mere 3 1/2 months after her diagnosis. Her family and friends feel so strongly that early diagnosis can save lives, that they have committed themselves to raising awareness of PH.

We had a walk around the lake, followed by a spaghetti luncheon, where we presented the Proclamation signed by Governor Mark Dayton declaring that November 2012 is PH Awareness Month in Minnesota. We invited U.S. Senator Amy Klobuchar to our event, but she is in the middle of a re-election campaign, and was unable to attend. She sent (a) letter promising her support in the U.S. Senate. Dr. Michael McGoon and his wife, Bonnie, were the recipients of this year's Proclamation. Dr. McGoon has been a tireless warrior against PH. He is the director of the Rochester Mayo PH Clinic.

It was a festive atmosphere as PH'ers and the larger community drew together and walked to raise awareness. It was a sight to see as we walked (160 strong) our brightly colored t-shirts with the Miles for Mallory logo apparent all along the lake shore. Everyone there said it was an inspiring event, and hope that we continue.

Learn how you can get a proclamation declaring November Pulmonary Hypertension Awareness Month

Welcome to Pulmonary Hypertension Awareness Month!

This welcome message from PHA’s President kicks things off with the stories of everyday heroes, from PHA’s founders to…YOU. Read our president's welcome message

Spread the word today – it’s PH Online Awareness Day! Then, check out lots of other opportunities to get involved on our PH Awareness Month page.