Thursday, July 12, 2012

Education, Friends and Excellent Ambiance

by Delia Rivera, PH patient

I am so happy to say that I was able to attend the conference in Orlando, Florida, and I was honored to have taken a friend of mine who is also a patient and is a member of our support group that my husband Michael started in Corpus Christi, TX. She had never been to a conference, and I had been to the one in Houston so I had some experience and I was more than happy to show her the ropes.

We were blown away when we entered the hotel, the ambiance was excellent. I would rate the hotel with five stars and not to mention the staff. "Oh my god,” I have never felt so welcomed and they were so hospitable. I met Debbie Castro (she’s one busy lady). I also met so many others.

I learned so much at the conference. It was very educational, and we had a lot of vendors from different pharmaceuticals who were very informative. I was also asked to be a mentor for patients on Tyvaso since I happen to be on it and of course without hesitation I said yes. I love being able to help out hers who need help or just need someone to talk to.

I will try really hard to attend the one in Indianapolis. If you didn’t attend the conference I strongly suggest you attend the next one, you will love it. Thank you to the Pulmonary Hypertension Association for putting together the conferences. I know we all appreciate your dedication. Thank you to all the sponsors for the grants they donated to help us go to these conferences!!!!

Monday, July 2, 2012

It Brought Me Joy

by Josephine Alvarado

This was my first time conference. It was very informative and all the staff and volunteers were outstanding.

I was hesitant at first to attend but I am glad that I did. So much information and so many people from all walks of life with this same illness. I brought back to Corpus Christi, TX, a lot of information and hope that one day with god's graces a cure will be found. Come Sunday I was sad having to leave this wonderful conference -- it brought me joy.

Too Many Favorite Things

Here is how Kiara Tatum responded to Alex Flipse's Facebook Question of the Day, "What was your favorite thing about conference?"

Too many favorite things. Meeting my sisters that I have been talking to for years & spending time with them. Meeting with PHriends that I have known on Facebook, the great sessions, the fun, the laughs, those fast lizards, the fashion show, the dinner ceremony, and everything was just what I needed for me to continue to have hope & feel empowered despite having PH. I can't wait 'til 2014. I'm so there!!!

We Can Make It Happen

by Mary Jo Piatek

Wow, what a great experience this conference was for me. I learned and understand this disease so much better now. I would like to thank the PHA, I was a lucky person to receive a scholarship for the conference, without it, it may have been a problem to get there. I went with my sister, both of us were glad we went. She even said she understands this disease a little bit better as well as understands the way I feel.

It's such a big world out there and sometimes you think you are all alone, but now I know that is not the case. Talking to different people, and knowing we are all in it together.

I can't say enough about the PHA and the hard work and dedication they put into this, I'm happy I joined and to be a part of it.

I do wish the disease could be caught much earlier and one day there be a cure for it. I was diagnosed 2 1/2 years ago and never heard of it before. I guess you can say it was a new beginning. Sometimes it's still hard to accept. I know there were some people a lot worse off than me and some were so much better. All the speakers were great, the Dr's & nurses were just as great.

Once again I thank everyone who is involved -- you're doing a great job and it shows. I hope to attend the next conference in Indiana as well. Keep up the great work and thank you again. It was an experience I will never forget.