Monday, April 30, 2012

Last Call for Notes of Thanks and Remembrance!

Last call! Print your special note of appreciation in the program book for PHA’s 10th International PH Conference! You don’t have to go to Conference to be able to tell the 1,300 expected attendees who is important to you. Each note is only $25 and all proceeds go toward the Conference Scholarship Fund! Hurry – all notes are due tomorrow, May 1 by midnight!

Submit your note of appreciation

Thursday, April 26, 2012

Kick Back at Generation Hope After Dark

Colleen Brunetti (on left) at Generation Hope After Dark in 2010
Join your Generation Hope peers (ages 20s-30s) for conversation and cocktails at the 2012 International PH Conference – Generation Hope After Dark event. Unwind with the new generation ready to fight PH at this exclusive event. Fellow Generation Hope member, Colleen Brunetti shared: 

“This event is a really great time to get to know some other patients in Generation Hope in an informal setting. It is nice to kick back after a day of meetings and seminars.”

So, kick back with other generation hope members – order a special mocktini and enjoy plenty of appetizers! As Colleen describes the event, “It is just about ‘getting to know you’ (the individual) and not so much about meds, and it was nice to have time to just socialize with other young adults.”

Expand your social and support circle by meeting other inspiring people who, as Colleen describes, “are young adults living their lives despite PH.”

This event will be held at Conference on June 23, 9:00 p.m. Let the countdown begin!

Thursday, April 12, 2012

New Patient/Family Led Sessions to Look Forward To

Posted by:
Doug Taylor
Support Group Leader, Lexington, S.C.
2012 PHA Conference Patient/Family Led Sessions Co-Chair

One of the many highlights of each Conference are the Patient/Family Led Sessions. They provide an opportunity for pulmonary hypertension patients and caregivers to learn from one another on a peer-to-peer basis. The doctors, nurses, pharmacists, etc. certainly know a lot about pulmonary hypertension, but the Patient/Family Led Sessions provide a forum for patients and family members to hear from people who have faced the same dilemmas they are facing. 

As the Co-Chairs of the Patient/Family Led Sessions, Jeannette Morrill (pictured right) and I have placed a lot of thought into the topics that will appeal to our community and identified panelists who offer a variety of experience and knowledge. Sessions will cover a broad range of topics. Additionally, we have several new sessions which will appeal to young adults, parents of pediatric patients and Spanish-speaking attendees.

New topics this year include:

Family Affair
Your doctor’s advice that you (or your spouse) shouldn’t become pregnant doesn’t mean you can’t have a family. Make informed decisions about family options when you or your spouse has pulmonary hypertension. Others have already forged the path. Learn the ins and outs of adoption and PH. Find out how others with PH keep up with the kids they have. 

9 to 5 with PH
Find a way to continue working and keeping up your health. Our jobs and careers make up such a large part of our identity that few of us want to give them up – not to mention the need for income and access to health insurance. Hear how other PH patients manage to work. Join this discussion of workplace rights and what you should or shouldn't tell your employer and fellow employees.

Making PH Sexy
Learn to recognize the frogs before you kiss them. Find the perfect partner – who will accept and respect your limitations. Socializing and dating (or just hanging) don't have to be sacrificed just because you have pulmonary hypertension. Hear how the panelists have addressed this issue and share your own tips. Discuss what to tell, when to tell, and how to tell it.

PH Goes to College
Choose the college and career that are right for you! Hear from college students and recent graduates about how they juggled PH, school, career planning, and even a social life. Learn about campus services and resources to help you have the time of your life, without compromising your health. Having a ‘health plan’ as you take on this responsibility is imperative.

Parents - Communication for a Healthy Family
Coping with pulmonary hypertension can be stressful for everyone in the family. During this session we will cover strategies for communicating about pulmonary hypertension, and maintaining the relationships that PH impacts. These topics will include the spousal, parent-child, and sibling relationships.

Parents - School and PH
Balancing your child’s education with their health needs can mean facing challenging decisions. Join us for this discussion on schooling to learn how other parents approach these issues at different developmental stages.

Spanish speaking sessions:

Hipertensión Pulmonar Y Relaciones Entre Familiares
Equilibrar su familia con sus necesidades de salud puede significar que se tengan que tomar decisiones difíciles. Únase a nosotros para esta discusión sobre como mantener una buena calidad de vida, al mismo tiempo que cumplimos con nuestras responsabilidades familiares. Conozca como otros pacientes han manejado su vida en las diferentes situaciones, siendo casados, padres solteros, y/o solteros.

Sobreviviendo Hipertensión Pulmonar: Lecciones De Sobrevivientes De Largo Término
Escucha las historias de pacientes "viviendo" y "sobreviviendo" con hipertensión pulmonar por 15 años o más. Comparte con los miembros del panel, aprende de ellos sus trucos personales para sobrevivir y aplícalos a tu propia vida. Conoce sus secretos para vivir con esperanza y fortaleza.

How can you have the best experience at the Patient/Family Led Sessions? Decide which two Patient/Family Led Sessions you want to attend in advance. This year, the sessions are scheduled for 2:30 p.m. – 3:30 p.m. and 4:00 p.m. – 5:00 p.m., Friday, June 22.  For the complete list of sessions being offered go to our Patient/Family Led Sessions web page, or look in the Conference handbook after you check in.

Monday, April 9, 2012

Associated Disease Filming Coming to Conference

Posted by:
Chanda Causer
Patient Outreach & Services Manager

Fifty percent of pulmonary hypertension (PH) patients developed PH due to another disease. Every disease associated with pulmonary hypertension represents a disease community - some of which are millions of patients strong - with a vested interest in pulmonary hypertension research, education and awareness. In order to better serve this growing population, PHA will develop videos to educate, build awareness and engage new constituents who have PH and an associated illness.

We will be filming the first four videos for the series at Conference featuring patients living with PH in association with HIV, lupus, scleroderma and adult congenital heart disease. Each video will center on a patient story and information from a medical professional, who are experienced with both conditions. Once completed, these videos will be promoted on PHA’s website and distributed to other disease related organizations.
If you are attending Conference, we need your help! If you are a PH patient living with one of the four targeted associated illnesses and you have an interest in telling your story as part of the video series, please contact Chanda Causer, Patient Outreach and Services Manager, at or at 301-565-3004 x777.

We look forward to working with you to continue building our resources for those living with PH and associated illnesses. See you in Orlando!

Wednesday, April 4, 2012

ANNOUNCEMENT: Early-Bird Registration Extended to April 9

More than 500 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions, The Power of One: From a Kitchen Table to Around the World. We hope you will join them! If you haven’t registered yet, you can still take advantage of the early-bird discount of $25/person through Monday, April 9. Don’t miss out on this opportunity!

Register now

For questions about registration, please contact or 301-565-3004 x768.

Please note that the early-bird discount rate will not be extended past Monday, April 9.