2006 Conference Story

Sally Maddox

Friday, June 23, 2006

Today was a very busy day. Many sessions, both training and informative went on before the opening of conference. The opening speech was very good. They talked about how we can support research and increase awareness of PPH.

We had the first sessions. I attended the "Dealing with stress" session. It was very helpful and we came away with some good suggestions.

The first set of support groups began today. I helped lead the patients on oral meds support group. Pretty big group.

Next was a session on fundraisers. My support group co leader Robin Merritt and I along with other explained how we planned our events.

Dinner was nice. Over 1100 people have registered for conference. The biggest ever.

Dr. Mike McGoon did a wonderful presentation on the advancements in pha meds and research and such over the past 16 years and also how far PHA has come.

Sally Maddox

Saturday, June 24, 2006

The day started out early with breakfast. The theme was international. There was a panel from different nations that spoke about their journey with PHA. Very informative and enlightening to see what is going on all over the world !!!

I don't think I told you yesterday but I gave blood for two research studies and today I gave more blood for another. Research is very important - Utah is doing research, as are Mayo, University of Colorado and Vanderbilt. Not fun but so imperative that we help the researchers by donating blood. (My mom got involved and donated blood also, she does not have PH but they wanted it anyway)

This morning I attending a living with a chronic illness session. It was very good and they had some really good tips and suggestions. (Side note: They will be compiling the different handouts from conference and post them on the internet in the next few weeks so be looking for them). Next I attended Basic Research in PH. They spoke of the new research going on in PH and much more.

Lunch was the highlight of the day. They presented Dr. Greg Elliot with the Outstanding Physician Award and presented some friend of the family awards (Encysive and Oracle). Journeys of several patients and their doctors were presented. From children to adults, from oral meds to a guy that has been transplanted, it was very encouraging and neat to listen to.

I attended Changing to different PH meds next. This was very good and much information was given.

The Founders dinner was the last event. Many outstanding volunteers were presented awards. (Side note - the conference brochure on the website has all the award winners and the entire schedule). Carl Hicks spoke on Why he fights. Very inspiring.

Sally Maddox

Sunday, June 25, 2006

Breakfast - all the raffle prizes were handed out. Pretty fun.

I attended Exercise and PH sessoions with Dr. Oudiz and Dr. Robbins. Very good - handout was a survey of some PH docs about exercise. As always, consult your physician before you begin and exercise program and listen to your body.

My mom attended a combo therapy sessions which was very good also. they talked about the different pathways of treatment and how two meds may be better than one.

I also attended Relationships and PH - we had to kick our room host out - a guy. This was a very good session. Communication is the key.

I briefly stopped by the international session and left for home.

What an experience !! I wish you all could have been there. I met so many nice people. One girl has only been diagnosed 2 months with 3 small children. To her, I said keep fighting.

As i said yesterday, handouts will be available in the next few weeks. Be looking for them:)

Sally Maddox


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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.