Pulmonary Hypertension Awareness Month

Pulmonary Hypertension Awareness Story
Submitted by: Hermalinda Avila, patient

My name is Hermalinda Avila and I was diagnosed with pulmonary hypertension in 2011 by a cardiologist who told me there was "no hope." My family pleaded with him for a referral to a lung specialist but he refused. It was only after a sleep apnea physician suggested I see a PH specialist in Fresno, (Dr. Vijay Balasubramanian), that I finally found someone who offered me hope when I had all but given up.

Dr. Balasubramanian made it clear that it would be a 50/50 effort - he would do his part in treating me, but I had to do my part, too, if I expected him to help me. Just then I saw that little ray of hope. I began Remodulin therapy on Dec. 1, 2011, and of course the side effects and my recovery are another story in itself. It is now December 2012, a year and a half after the cardiologist said "take her home and make her comfortable because she only has months to live."

Well, on December 1, 2012, it was my proud honor to participate in the Lemoore, Calif., Christmas parade representing PAH awareness. My family and many of my friends proudly marched in the parade representing PAH awareness. The thing is, they didn’t carry a picture of me as a memorial - I led the march as a surviving PAH patient. I am the "Zebra."

I have great gratitude and respect for Dr. Bala for his honesty and empowering hope that he gave me that November afternoon when my outlook was hopeless. Due to the lack of education on this condition, many doctors lack empathy for their patients who want to grasp at the last bit of hope there is to survive. I am a PH patient and I’m still striving to survive and educate myself to be able to help others who may have given up. I will always have PAH, but now I have a fighting chance to live a longer and more productive life, and so do all PAH patients. The side effects of the treatments can be very harsh, but at the end there is that little ray of hope. We must not lose focus, because once the side effects ease off there’s only looking forward to tomorrow.

PHA Toronto recently reported that they secured 29 proclamations recognizing November as Pulmonary Hypertension Awareness Month in Ontario, Canada. Their success really shows how far the proclamation campaign has spread in the last couple of years.

Two years ago, Support Group Leader and 435 Campaigner Doug Taylor from South Carolina challenged PHers to beat his efforts to procure the most proclamations recognizing November as PH Awareness Month. That year, the PH community worked together to get 30 proclamations. Recently, when Doug heard about the widespread proclamation success this November he said, “Looks like South Carolina has finally lost our #1 status for the most proclamations. I've always said it was one record I wanted to lose and this was the year!”

Congratulations to PHA Toronto for their hard work in getting so many proclamations!

Community Awareness Story
Submitted by: Angela, patient, Roberts, Idaho

I have severe primary pulmonary arterial hypertension and a hole in my heart. I've only been diagnosed for a year now and just starting on my awareness. Blackfoot Morning News is doing a story on me and this disease to help get awareness in Idaho. They will air it Christmas morning.

This spring/summer I will work on doing fundraisers and stuff like that and looking forward in doing my part to get the word out. I don't have a news article or anything yet because they are still working on putting the story together. Even though Awareness Month is over it's never too late to keep the information going. Here's a picture of me in the hospital at the University of Utah in Salt Lake City. Thanks for listening and thanks for letting me share what I have.

Get involved in raising awareness through the media

In mid-November, we reported that PHers had secured close to 60 proclamations declaring November as Pulmonary Hypertension Awareness Month. You didn't stop there! Below is a list of the proclamations garnered in the latter half of the month bringing us to a grand total of 80 proclamations! Great work everyone!

• Bullhead City, Ariz., Joy Gore
• Gilbert, Ariz., Staci Burk
• State of Arkansas, Deloris Taldo Peacy
• Tontitown, Ark., Deloris Taldo Peacy
• Fort Pierce, Fla., Michelle Holden
• West Hollywood, Fla., Michelle Holden
• Alsip, Ill., Vicky Rantfl
• Palos Heights, Ill., Vicky Rantfl
• State of Nebraska, Carol Lindstrom
• State of New Jersey, Melanie Kozak
• Clifton, N.J., Melanie Kozak
• Passaic County, N.J., Melanie Kozak
• Pennsylvania State Representative Richard Stevenson, Merle Reeseman
• Aiken, S.C., Doug Taylor 
• Irmo, S.C., Doug Taylor 
• Lexington, S.C., Doug Taylor
• North Augusta, S.C., Doug Taylor
• Saluda County, S.C., Doug Taylor
• West Columbia, S.C., Doug Taylor
• State of Tennessee, Barbara Thompson
• Davidson County, Tenn., Evette Britton
• Gallatin, Tenn., Evette Britton
• Nashville, Tenn., Evette Britton
• Sumner, Tenn., Evette Britton
• Friendwood, Texas, Jennifer Cueva

Submitted by: Aimee, patient, Raleigh, N.C.

I changed my Facebook photo to this one of my daughter dressed up as a zebra and posted the "Sometimes it's PH" link with a short blurb about myself as my status at the beginning of the month. I had lots of friends comment and many more than I would have imagined post the link as their status for a day too. Not a lot, but it's still something! :)

Submitted by: Kevin Mayhood-Paskawych, patient, Marietta, Ohio

I wrote several articles for CNN's iReport in an attempt to get my message out. Unfortunately the election and the strife in the Middle East took most of the headlines, but I know in my local area having the article up on CNN did help get the word out. Never underestimate any resource.

Read Kevin's CNN articles:

• My Diagnosis; A Need for Pulmonary Hypertension Awareness
• Pulmonary Hypertension; The Caregivers Choice

“I found out about your support group over the radio. I’ve been having shortness of breath for over a year and a half. I’ve been to cardiologists, neurologists and pulmonologists and they have not found a problem. There was never a mention of the possibility of pulmonary hypertension. My quality of life is impaired and I am frustrated.”
--Radio show listener who contacted Ft. Worth Support Group Leader Diane Dauwalder after she spoke on air about PH and her upcoming special event.

This November, we asked you to spread the word that Sometimes it’s PH and PH community members responded in a huge way! In 30 short days, PHers were everywhere: in news headlines, community events, government offices and online! Here are just a few of the ways PHers raised awareness this November:

Media!

• Emmanuel Morantus shared his PH story in The New York Times
• Kevin Paskawych posted about his diagnosis experience on CNN.com iReport

Proclamations!
PHers secured a record busting 77 proclamations declaring November PH Awareness Month. Some went 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.

Congress!
PHers came from as far away as Washington came to PHA’s Congressional Luncheon to ask their Representatives and Senators to support the Tom Lantos Pulmonary Hypertension Research and Education Act. Luncheon speakers included Dr. Gary Gibbons, the Director of the National Heart, Lung and Blood Institute at the National Institutes of Health.

Special Events!
This November boasted more than a dozen special event fundraisers in support of PH research and PHA programs.  Events included five 6 Minute Marathons. The events are designed to give special event attendees an idea what it’s like to experience the 6 minute walk test PH patients regularly undergo as a part of their treatment.

Online!
PHers around the globe found creative ways to raise PH awareness online including sharing photos, changing their status messages and sharing their PH journeys.

Thanks to everyone who participated in Awareness Month this November! Read more success stories and check out photos from Awareness Month events

Submitted by: patient, Janeris Studios, Miami, Fl.

We had a "Fun Walk" to raise money for PHA. An awesome high school jazz band (North Broward Prep) performed as we walked. Friends and family of PH patients came in support and we were able to raise a good amount of money for the association. I took lots of pictures and put them on Facebook.

View photos

Submitted by: Perry Mamigonian, patient, Fresno, Calif.

On Sunday, November 4, 2012, the Fresno, Calif., PH Support Group hosted our first-ever "Six Minute Marathon" at Oso de Oro Lake Park in Fresno. We anticipated about 30-40 people and ended up with 77 in attendance. The weather was beautiful, 77 degrees and clear skies. The park had two trails - one short walk for the disabled, and a longer 1/4 mile trail around the lake. Almost everyone chose to walk around the lake.

After the marathon we enjoyed a great BBQ and welcomed our guest speaker, Dr. Vijay Balasubramanian, Medical Director of the PH Program at USCF/Fresno. Our pledges raised over $2,600 and we look forward to making this an even bigger event next year.

Submitted by:  Pulmonary Hypertension South Africa, Cape Town, South Africa

We decided, because of low budgets to have one big Awareness Day on 3 November where we had 7 guest speakers and about 70 delegates, representing patients, caregivers, doctors, medical aids, Pfizer and members of the media!! This was held at Wanderers in Gauteng. Read news coverage | View photos from event

We also had two Facebook activities, Letters to God and PHSA NoPHember Awareness Month Photo Album of Groups Around the World.

You can visit PH South Africa on their website or on Facebook.

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.

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!

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.

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...

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.

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."

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

Pulmonary Hypertension Awareness Month Story
Submitted by: Diane Roberts

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 below).

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. www.dianeroberts.jamberrynails.net

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.

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.

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.

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.”

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.”

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. Watch the news video

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

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)

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.

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.”

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

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

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

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!

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.

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 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. Watch the Good Morning Texas clip

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.

Get involved in Awareness Month | Share your Awareness Month story

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.

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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

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

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

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

Florida
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

Maryland
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

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.

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

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.

We are kicking off Pulmonary Hypertension Awareness Month with a day of worldwide action online. Let's go global PHers!

RSVP, get ideas, and invite your friends!

“Whenever we, the patients, can put a face to PH we have the potential to help many."
– Jeanette Morrill

Help put a face on pulmonary hypertension in Congress. RSVP by November 6 for PHA’s free luncheon on Capitol Hill. RSVP to ElisabethW@PHAssociation.org

PHA’s Congressional Luncheon
Tuesday, November 13, 2012
Dirksen Senate Office Bldg., Room 106
Washington, D.C.

Registration opens: 11:45 a.m.
Program begins: 12:15 p.m.

RSVP to ElisabethW@PHAssociation.org or 301-565-3004 x753
Lunch is free and transportation is available from PHA’s office. Mention your travel plans when you RSVP.

P.S. No matter where you live, invite your Members of Congress to attend the Luncheon!

Seven PHA Special Events are taking place this coming weekend in California, Maryland, Nebraska, New Mexico, New York and Texas. If you're in any of these areas we hope you can join in on the fun!

California
12th Annual Race Against PH
Sunday, Nov. 4
Stanford University, Standford, Calif.
Learn more

California
Fresno Six-Minute Marathon
Sunday, Nov. 4
Oso de Oro Lake Park, Fresno, Calif.
Learn more

Maryland
Vision of Hope Gala
Saturday, Nov. 3
Valley Mansion, Cockeysville, Md. (Baltimore area)
Learn more

Nebraska
7th Annual PHenomenal Hope for a Cure Brunch
Saturday, Nov. 3
DC Centre, Omaha, Neb.
Learn more

New Mexico
3rd Annual Breathe Easy 5K
Saturday, Nov. 3
Athlete's Edge, Albuquerque, N.M.
Learn more

New York
2nd Annual Sarah Smiles PHun-Raiser for PH
Saturday, Nov. 3
Elks Lodge, Camilus, N.Y.
Learn more

Texas
6th Annual North Texas Zebra PHriends 5K Run and PHun Walk for a Cure
Saturday, Nov. 3
Andy Brown East Park, Coppell, Texas
Learn more

When you raise PH awareness during November – Pulmonary Hypertension Awareness Month – you’re part of a global team thousands strong. It’s not too late to get involved! Jump-start your creativity with the webinar recording Get in on the (PH Awareness Month) Action!

Watch the webinar for Awareness Month ideas