Moving Closer to a Cure... and the Flames of Light to Lead Us There

As the holiday season approaches, we focus on the concept of giving gifts to others. Too often, we forget to give to ourselves: to acknowledge our strength to fight back sickness, our minds that stay constructive and our spirits high in hopes of a cure for pulmonary hypertension. PHA has focused on creating an environment of giving through programs and services, education and advocacy and continuing research but now it is imperative we do more to sustain ourselves and move into the future.

While the days become shorter we can get stuck in the darkness. This year, let us focus on the light and how we each can represent the brightness for ourselves, our loved ones and our community for the future. It is a simple task for each of us and together will solidify that we are united, we have a voice and we must be heard to find a cure.

Please show your support of PHA by sharing your "Points of Light" and keeping the flame ignited until we find a cure. Each person has a responsibility to stamp his/her own footprints for pulmonary hypertension and teach others to follow in those steps. Remember who you interact with daily, your business connections, your local goods and service providers. The best leaders do so by example - we are our best voice. Wishing us all a beautiful holiday season, celebrating family and friendships, reflecting on the sweetness of the past year and being good to ourselves and one another in peace.

With warmest smiles and helping carry the flame of hope,

Lisabeth Gansberg
Executive Director, PHA Midwest Chapter

Flames of Light - PH Awareness Month

Veterans Day always falls in the midst of Pulmonary Hypertension Awareness Month. So it is especially noteworthy that we salute one of our most beloved caretakers, Delmar Gerth, 90, as he celebrates Veterans Day this year. That he served in France during World War II adds to the holiday's significance.

In 1947, Delmar, also a Lutheran pastor, met his wife, Mary, who's 84. In 1994, when she was diagnosed with pulmonary hypertension, Delmar became her primary caregiver. Last June, they celebrated their 65th wedding anniversary. Both attribute their lasting marriage to inner strength and their faith in God though anyone who knows them can see how crazy they are for each other. Their commitment to one another, especially in light of Mary's struggle with PH, is extraordinary. According to their daughter Luann, Delmar's devotion to Mary is inspiring. "He takes care of organizing my mother's medication every Saturday," says Luann. "That's over 350 pills a week."

Delmar also has taken on the job of applying for two grants every year, grants that give Mary access to medications that would normally be cost-prohibitive. "Those drugs - and my father's dedication to doing all that he can to help her - have made it possible for my mother to live longer than what the doctors originally told her."

In addition to his grant-writing skills and the time Delmar devotes to Mary's medication regimen, he takes care of getting her to multiple doctor appointments, including numerous tests and procedures. "We were both brought up to stick together through thick and thin," says Mary. "He's my team captain."

For the rest of this year, the Pulmonary Hypertension Association's Midwest Chapter will be celebrating life with our "Flames of Light" end of year campaign. We ask that you start thinking about what makes your life bright. For example, Mary and Delmar have 65 years of marriage. She has 84 candles on her birthday cake plus one for good luck. It can be something as simple as the number of lamps in your home, the windows that bring in the sun each day, or the logs in your fireplace that warm your home and light hearts as all gather around during the holiday season. Look for the details on creating a bright future for PH within the next few weeks.

With smiles and warmth throughout the season,

Lisabeth Gansberg
Executive Director, PHA Midwest Chapter

Tony Piatek Honors Mother with Chicago Marathon Run

Tony Piatek has run the Chicago Marathon three times before to honor his mother, Mary Jo Piatek, a patient with pulmonary hypertension and scleroderma. But when he runs the race for the fourth time on Oct. 13, it will be his first marathon since Mary Jo lost her battle with PH. Tony, a leader in PHA’s Midwest Chapter, remembers his mother this way:

“She fought so hard each day to battle PH that it makes running 26.2 miles seem like a very simple task. She continues to be my inspiration everyday as I'll always remember how she took on the disease with such resiliency. She was loved and adored by so many as she was ALWAYS in a good mood and brightened everyone's life that she was a part of.”

Tony shares more about his mother’s PH experience and his family’s hope for a cure as he aims to raise $5,000 for PHA through this marathon.

Read the Piatek’s story and help Tony reach his goal

Meet You at the Finish Line

Over 125 walkers enjoyed the beautiful early fall weather this past Saturday morning at our O₂ breathe Walk in Palatine, Ill., raising more than $18,000. This and other Chapter events increase awareness and raise further funding for PHA research and programs for patients and families.

Body Art, Music and Hotdogs Spell PHun in Palatine, IL, this Saturday

Join PHA's Midwest Chapter in Palatine, Ill., this Saturday for our O₂ breathe Walk. Laine Too Body Art will be on site offering temporary body art, A-Z Entertainment will be at the starting-line handling the music, and Christopher Paul Photography will be on course capturing all your team photos, so don't miss out on the fun!

After the walk plan on lunch or dinner at Photos Hotdogs Palatine (301 N. Northwest Hwy., Palatine), where 25% of your order will be given to PHA.

Join us Saturday

Chicagoland Come Walk with Us!

Come out to Palatine, Ill., on Sept. 21 for a day of fun with PHriends at PHA Midwest Chapter’s O₂ breath Walk. This event will be raising much-needed awareness about pulmonary hypertension as well as funds for PH programs and research. Step out for the cause!

Register today and consider starting a fundraising page

Meet Team PHenomenal Hope Tomorrow!

Seven incredible women from Pittsburgh passionate about cycling and about raising awareness and funds for PHA have formed Team PH to compete in a high endurance race in honor of PHA. Learn about these cyclists and their ambitious Race Across America (RAAM) planned for 2014 in a brand new YouTube video! Watch the video (4.5 min)

When you see this dynamic video, we think you’ll want to get to know the team members. So plan to greet them on a webinar, “That’s How We Roll: A Interactive Conversation with the Cyclists of PHA’s Team PHenomenal Hope” Aug. 20, 8 p.m. E.T./5 p.m. P.T. Ask your questions about the race they will take on next June and how their cycling challenge mirrors the challenges of daily life with pulmonary hypertension. Register now

Chicagoland PHers – We’re Walking for a Cure

Join PHA’s Midwest Chapter and the Chicagoland area PH community for our O2 breathe Chicago Walk on Saturday, Sept. 22 at Twin Lakes in Palatine, Ill. Gather your friends and family to form a team in support of the PH patient in your life. Your team can create custom T-shirts and signs and raise funds for much needed PH research and programs.

Can’t attend? You can still participate by becoming a virtual walker and raising awareness and funds for the cause.

Learn more and register

Come Rock Out to Sting on June 8

We have tickets to the sold out Sting concert! Join us for a night at the O2 breath “Under the Stars Lounge.” Avoid the rush of getting to the park early to find the perfect lawn spot, schlepping the essentials and picnic treats and all the other paraphernalia that make concert going magic. We will supply it all for you, with a premium, roomy lawn space for you and your PHriends to enjoy a catered affair to the music of Sting.

Learn more and get your tickets today!

Welcome to the Illinois Chapter’s Website

The office officially opened in Northbrook, Ill., on Jan 28, 2013, fully staffed with Lisa Beth Gansberg, Executive Director, Geoff Gephart, Development Director and Lindsey Noel, Development Manager.
The Chapter rolled out its presence with a reception at Gino’s O’Hare on January 17, 2013, where over 30 people, including patients, caregivers, medical practitioners and corporate partners attended to learn about the new initiative - the purpose of the Chapter model is to create additional revenue streams through cause-related event marketing to support the National mission.

This team has undergone extensive training on PHA, its history, constituency and the current medical state including quality of care, programs and services available and research. Our combined experience aligns us for success.

The planning is underway to stage over 10 events including: Walks, 6 Minute Marathons, 100 Hole Challenges, a Gala, a Guinness World Record Challenge and a social media appeal.

Going forward, this team is calling ourselves and the office the “PHun PHactory.” We are focused on making a positive change for pulmonary hypertension and developing events that appeal to mass markets for maximum awareness.

Volunteers as well as individual and corporate partners are always invited and welcome. If you would like to join the “PHun” please contact us directly at GetInvolved@IL-PHA.org.

P.S. Keep checking back to see our ever-growing event schedule and opportunities to participate. Get in on the “PHun."

With warmest smiles and helping carry the flame of hope,

Lisa Beth Gansberg
Executive Director, PHA Illinois Chapter