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Conference!!
Friday, August 03, 2012

So I went to Conference!! It was my second time there and boy did I have a good time!! I think I was more at peace this time than at the last Conference.  This Conference I was able to Volunteer at the regestion booth.  I was able to lead a Support Group Session.  I was even able to sit with two other amazing people and lead a Session at Conference called Doctor Doctor how to talk with your Doctor!! It was amazing!! I met new friends and I met old friends.  It was truly a memorable experience.  I can't wait for Indiana!! I am saving every penny that I have in order to go out there.  I would encourage every single person with PH to get out to Indiana.  I was in a fashion show!! It was amazing!! Thank you PHA for everything that you do for us.  Every thing that you do behind the scenes to make it the best weekend of our lives.  You are truly amazing people!! I wish that I could have helped out more!! Next time I will!! Anything that you need I am all yours!! Go to Conference it will change your life!!

The TSA came to Morristown and taught us how to FLY!!
Wednesday, May 23, 2012

The TSA came to Morristown and taught us how to fly! They were amazing Ms. Ruiz and Audrey were very professional and very personable.  They answered all of our questioned and heard all of our complaints.  They were so kind and totally cool.  They explained how the TSA is here to help us travel safely and how they are here to help us travel with dignity.  We had over 25 people at today's meeting to learn how to fly!  We had support group leaders in from NYC and newly diagnosed members from southern jersey who just looking for support.  It was a great meeting.  I am so excited to be running this group now.  I am so excited for the rest of the year and for all the upcoming meetings!!

 

The next meeting is Sept 11th!!

10 Patients and 3 caregivers in NYC!!!
Wednesday, May 16, 2012

Who would have thought that you could have gotten 10 patients from lets see 2 from NJ, 1 from Conn, 1 from Mass, 1 from Maine, 1 from Nebraska!!! 1 from Maryland and 3 from NYC together with their caregivers and then slip in another NYC'er later in the day making it 11 patients overall during our whirl wind adventure down Broadway!!! It started off with lunch at Ellen's Stardust Diner where the waiters and waiters sing!! and then we shopped our way down to Times SQ losing people to booths along the way.  It was so much fun.  I mean watching poor Kiara get prayed over by the Rabbi was to funny and then to be handed a flyer and told if she just meditated more she would be healthy and wouldn't need oxygen.  They Rabbi had just told her she just need to pray more.  So which is it pray or meditation?? At this point she turned to me and said why aren't the picking on you...I clearly had a canula up my nose but not one person had approach me they kept approaching poor Kiara... that's when I informed her that they all knew that I was too wicked to be saved ;)  Anyhow,  as I approach the end of the my O2 tank I bid farewell to my new phriends and to my old phriends with promises of seeing all of them at conference.  I can't wait until Conference.  As it approaches it makes me so glad that I will see all of me PHriends again. 

My First Meeting!!
Monday, March 26, 2012

So I did it!! My first meeting as Leader!! I pulled it off....with help of course from Accredo's Community Advocate. And of course James!!! Thank You James for that beautiful restuarant.  We had almost 30 people at the meeting!! I could not have asked for a better turn out!! Thank you to everyone who made my first meeting successful!! Thank you Thank you Thank you!! And Thank you for not passing out while climbing up the two flights of stairs while getting up to my fabulous meeting!! Thanks guys and gals!! Love you all!!

Proclamation Challange!!
Friday, October 28, 2011

So I took up the Challange! I aimed big! And i pulled it off!!! The Govenor of NJ Chris Christie signed a proclamation into affect on October 27th, 2011 stating that November 2011 will be Pulmonary Hypertension Awareness Month!!! I am so proud to say that we did it!!! Lisa, Melanie, and Me!! Our emails made a difference.  Now I am working on my County level and town level to get this disease recognized.  I just know that if each of us gets excited about this then we can get the media coverage that we need to get the word out there that we are looking for.  We need to find a cure for this disease!! Lets all get proclamtions!!! It is so exciting!!

 

I will keep you updated!!

 

 

Puckering up 4 PH
Wednesday, October 06, 2010

So I have taken on the challenge!  My goal is now 1000 lip prints!  What have I gotten myself into... I sleep at night and dream of blue lip prints... wish me luck... I will keep you updated

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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.