The picture above is me,Cindy Pickles ,Senator Kay Hagan and Janet Cecil at her DC office-we had coffee and doughnuts together.What a treat !
I know it has been awhile since I posted on here.I got kind of lost doing so many other things.I have found my way back-so here I am .
As I have already said November is Pulmonary Arterial Hypertension Awareness month.I plan on writing everyday about PH.Personal stories,new info etc.
First I would like to begin with an update.I went to Maryland and DC last month .There were three of us from North Carolina and we wanted to lobby.That is exactly what we did.We met with Senator Kay Hagan.We told her about PH,how it effects us,how many patients there are in NC and we asked her to bring our bill H.R. 1030 into the Senate.She said she would take it into consideration.We also met with Jennifer from Senator Richard Burr's office.Gave her all the facts and info and asked the same thing.She passed the info on to his Public Health Expert.We are hoping they will do something together.Following up on this is imperative.
I so enjoy advocacy.I love the whole legal process,going to Washington DC and meeting new people.Doing this has helped me in a way I wasn't expecting.It has boosted my self-esteem.I honestly feel that I can make a difference.We all can make a difference.We are a phamily that cares for each other and holds each other up when we are down.
One of the perks from our trip last month was an invitation to tour the White House.There were 4 patients and 3 caregivers touring the white house on October 16Th.it was totally awesome!
We also got a chance to meet the entire PHA board and fill them in on what we have been doing.
I went to a support group meeting there and got a chance to visit with Ellen for a few minutes and take some pics.It was a great trip.We accomplished what we set out to do.We were also able to drop off a legislative kit at Congressman Butterfield's office.That visit made it official.All 13 reps and both senators from North Carolina have now been presented with H.R 1030.The Tom Lantos Pulmonary Hypertension Research and Education Act of 2009-woohoo !!!!
As of today in N.C. we have 4 co-sponsors and 2 senators considering our bill.I hope and pray that we will get more co-sponsors and get this bill passed.