Ariz. Support Group Meetings in Phoenix and Tucson

We have had some amazing meetings the past few months in the Phoenix and Tucson areas that we wanted to share with everyone.

Phoenix Meetings

May

Our May meeting was jam packed with speakers.  We had Ginny Adams from United Therapeutics talk to us about their Remodulin Therapy Assistance (RTA) program.  Jana Gray from United Therapeutics also talked about their new PEER Network program.  They were also kind enough to sponsor the lunch for this meeting.  One of our PH specialists in the Phoenix area, Dr. David Baratz, stopped by to tell us about a clinical trial he is involved in and to see if anyone wanted to be included in the trial.

Our final speaker was Leslie Smith from My Girlfriend’s Kitchen (MGFK).  At MGFK, you chose your entrees ahead of time and then the staff does the shopping and chopping.  You show up at the kitchen at the scheduled time, find the ingredients ready and waiting, and toss together your tasty meals (the menus change monthly).  When you leave, you have family sized dinners (most can be split into smaller portions) ready to store, and whenever you’re ready, to finish and serve at home.  They will also do the prep work for people who aren’t able to attend the sessions.  Leslie also provided us with some free meals and also a gift certificate for 6 free meals!

July

The conference room at the American Lung Association, where we hold our meetings, was busting at the seams due to a massive turnout of support group members!  Everyone wanted to hear about the newly approved drug Letairis.  It was also due to the fact the Dr. David Baratz (PH specialist) was speaking.  We always have a large turnout when he speaks.  So it was a double whammy this time!  Dr. Baratz gave us an overview of PH, treatment options and information regarding the new drug, Letairis.  After he was finished, one of our members, Mike Rosenthal, spoke about his SeQual Eclipse portable oxygen system.  We would also like to thank Gilead for sponsoring our lunch for this meeting.

Tucson Meetings

June


We had a very special meeting in June.  It was a patient seminar held at Northwest Hospital with several speakers.  Cathy Grumbles, RD, spoke to us about the basic recommendations for a healthy heart diet.  The overview was recommending the following: low fat and low sodium foods and tips (make sure to read food labels), eating within your caloric needs and eating a variety of foods.

Edna Silva spoke to us about stress managements and cardiac/pulmonary rehab.  The five steps of Freeze Frame.  ONE – recognize the stressful feeling and Freeze Frame it.  Take a time out!  TWO – make a sincere effort to shift your focus away from the racing mind or disturbed emotions to the area around your heart.  Pretend you’re breathing through your heart to help focus your energy in this area.  Keep your focus there for 10 seconds or more.  THREE – recall a positive, fun feeling or time you’ve had in life and attempt to re-experience it.  FOUR – now ask your heart, using your intuition, common sense and sincerity, what would be a more efficient response to the situation, one that will minimize future stress?  FIVE – listen to what your heart says in answer to your question.  It’s an effective way to put your reactive mind and emotions in check – and an “in-house” source of common-sense solutions!

Dr. Franz Rischard set up this wonderful seminar and also talked to us about pulmonary hypertension.  Thank you to Actelion Pharmaceuticals and United Therapeutics for providing our lunch.

August


Dr. Franz Rischard, a specialist in PH, spoke to the group about the newly approved drug, Letairis. He gave us an overview of PH, treatment options and information regarding Letairis.  We would also like to thank Gilead for sponsoring our lunch for this meeting.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.