Saturday, March 13, 2010
Preparing for 2010 Conference
The June conference will be the best ever. Excitement is mounting as the time draws closer and travel plans are a work in progress. I traveled to California last week for meetings and some final conference preparations. It will be great. The weather should be warm in the upper 80s with zero humidity making it easy for us to breath. Starting June 1st I am going to slowly start adjusting my sleep pattern since CA is 3 hours behind the East Coast. I want to be awake and enjoy every minute there. See you in sunny CA.
Being Part of Path to a Cure
Piedmont PH Support Group had 12 patients, family and friends show up for our Path to a Cure Unity Walk that was held February 23, 2010 at Hanes Mall in Winston-Salem, NC. Thanks to Barbara Hockaday, manager of the local Accredo office for providing sandwiches and water. $425 was collected to support the efforts of Dr Frantz, Dr Benza and Jessica Lasar to not only increase PH awareness but raise research funds to find a cure. Thanks--we really appreciate being part of this event.
Arrangements were finalized for Wednesday February 24, 2010 for our conversation with the mountain climbers. As the time drew near a call came in explaining how sick the group was and the call would need to be rescheduled. The window of opportunity was not very big. The following day the conference room was not available and Friday I had an appointment with a new cardiologist which was already put off once. (The doctor rescheduled so he would have more time to go over all the records. LOL). By the time it could be rescheduled the guys would already be well off the mountain.
To my surprise Jessica from PHA called mid morning on Thursday, February 25th. Dr Benza and Dr Frantz checked in with them. Jess wanted to try to patch the call to me. This was so unexpected but so exciting--totally unexpected. We had a great conversation talking about many different things from our walk, the snow, the beautiful view, climbing the mountain, being SOB. Thanks so much for sharing your adventure with us.
We are not only thankful that all three of you made it home safely but for your efforts to combat this disease.
Arrangements were finalized for Wednesday February 24, 2010 for our conversation with the mountain climbers. As the time drew near a call came in explaining how sick the group was and the call would need to be rescheduled. The window of opportunity was not very big. The following day the conference room was not available and Friday I had an appointment with a new cardiologist which was already put off once. (The doctor rescheduled so he would have more time to go over all the records. LOL). By the time it could be rescheduled the guys would already be well off the mountain.
To my surprise Jessica from PHA called mid morning on Thursday, February 25th. Dr Benza and Dr Frantz checked in with them. Jess wanted to try to patch the call to me. This was so unexpected but so exciting--totally unexpected. We had a great conversation talking about many different things from our walk, the snow, the beautiful view, climbing the mountain, being SOB. Thanks so much for sharing your adventure with us.
We are not only thankful that all three of you made it home safely but for your efforts to combat this disease.
Wednesday, February 17, 2010
Hear is Talking to You
As you may know the Piedmont PH Support Group is hosting a Kilimanjaro Unity Walk on Tuesday February 23, 2010 from 6-8 pm starting at BestHealth in Hanes Mall; Winston-Salem, NC. We are excited about this event hoping we can add some to the research funds.
Arrangements have been ironed out for us to actually speak to the our heroes climbing Mt Kilimanjaro via satellite phone link up. Since this could only be arranged from 8 am - 12 noon while they are in base camp, February 24th at 11 am was selected, the day after our walk. Many PH patients are not early risers. LOL
We needed to arrange a conference room with a good speaker phone. So if you are in the area on Feb 24th come join us on the Campus of Wake Forest University Baptist Medical Center. We will be on the 4th floor Miller Street conference room. The building is located at the corner of Miller Street and Cloverdale Avenue; Winston-Salem, NC next to Wendy's. Look forward to seeing you there.
Thanks team.
Arrangements have been ironed out for us to actually speak to the our heroes climbing Mt Kilimanjaro via satellite phone link up. Since this could only be arranged from 8 am - 12 noon while they are in base camp, February 24th at 11 am was selected, the day after our walk. Many PH patients are not early risers. LOL
We needed to arrange a conference room with a good speaker phone. So if you are in the area on Feb 24th come join us on the Campus of Wake Forest University Baptist Medical Center. We will be on the 4th floor Miller Street conference room. The building is located at the corner of Miller Street and Cloverdale Avenue; Winston-Salem, NC next to Wendy's. Look forward to seeing you there.
Thanks team.
Friday, February 12, 2010
Media Madness
Diane Ramirez is working with her contacts at the local Fox News. They did a PH story for us in November 2008 for Awareness Month. Our hope is for them to do a story about the Kilimanjaro Climb and our walk to be held on February 23 at Hanes Mall in Winston-Salem, NC.
I have been in touch with the WS Journal who previously did a story regarding David, one of the PH kids in our support group. I am convinced Lisa, the reporter will be back in touch in the next couple of days with an answer.
Excitement is mounting!
I have been in touch with the WS Journal who previously did a story regarding David, one of the PH kids in our support group. I am convinced Lisa, the reporter will be back in touch in the next couple of days with an answer.
Excitement is mounting!
Sunday, February 7, 2010
Support the Kilimanjaro Climb
Good Evening. This is definitely more fun than watching the Super Bowl!!
As you may know a little more than a week from now, Dr Frantz from the Mayo Clinic, Dr Benza and Jessica Lazar from Allegheny General in Pittsburgh will be starting out on a journey that will take them close to the top of the world. They are doing this in support of us, patient with Pulmonary Hypertension. We need to support them as in doing so we are also helping ourselves. Researches believe a PH cure is just on the horizon. The time it takes to get to the horizon will be shorter due to the efforts of caring people like these three.
Have a great time you guys. Be safe. Bundle up and thanks a million.
As you may know a little more than a week from now, Dr Frantz from the Mayo Clinic, Dr Benza and Jessica Lazar from Allegheny General in Pittsburgh will be starting out on a journey that will take them close to the top of the world. They are doing this in support of us, patient with Pulmonary Hypertension. We need to support them as in doing so we are also helping ourselves. Researches believe a PH cure is just on the horizon. The time it takes to get to the horizon will be shorter due to the efforts of caring people like these three.
Have a great time you guys. Be safe. Bundle up and thanks a million.
Tuesday, January 12, 2010
Jury Duty
My husband receives a summons for jury duty at least once a year. I never get one. It has probably been 15+ years since I had one. Believe it or not a summons came for me in the mail today. Yikes! February 23rd, the same day as our Unity Walk supporting Dr Frantz, Dr Benza and Jessica as they trek up Mt Kilimanjaro for PH. Do you think the judge will let me off for this reason? Maybe I could get him to donate! LOL. I can be convincing!
The day before I call to see if my assigned number is required to report. I should still have enough time even if I need to show up jury duty. I wiIl need a back-up plan in case I'm not out in time. John says you stay until they are finished with you. What next Charlie Brown?
The day before I call to see if my assigned number is required to report. I should still have enough time even if I need to show up jury duty. I wiIl need a back-up plan in case I'm not out in time. John says you stay until they are finished with you. What next Charlie Brown?
Saturday, December 19, 2009
2009 PAH Reflections
Wow the year is almost gone again. Where does the time go? Another good year for Piedmont PH Support Group. PH activities are always in the forefront. I need to comment more frequently as I will probably forget something important. Give me a minute to think of everything that happened in 2009.
---Good shock of all shocks, I was asked to serve on the PHA Board beginning in January 2009. This is a definite honor. Attended the first meeting in Orlando February 2009--truly a learning experience. There is so much behind the scene work that makes the PHA organization work like a fine-tune, oiled machine. The dedication and commitment of the physicians, staff, volunteers , patients, families and friends to find a PH Cure is beyond remarkable.
---Our group again participated in the spring Belk's Charity Day. This is an easy fundraiser with no cash out of pocket. Anyone who has a Belk's in their area can contact the store office to getout details. They hold a spring and a fall charity day.
---May 2009 we held our second 5K PH walk/run. Even with the rain we had 40 participants and raised $10,000 for PH research. The new PHA calendar arrived today. Diane is the one holding the sign, "I walked 5K for PH.
---Traveled to California to the 2010 Conference Hotel to help with logistics planning. The conference is going to be awesome. Again there is so much work that goes into pulling off a quality event of this magnitude. You will just love it. Even John is planning to attend conference this time. I think Disneyland was more a pulling force than PH. LOL He is still a kid at heart.
---Diane Ramirez again arranged congressional visits in NC expanding outside of our group's representatives. Diane contacted other support group leaders in NC, schedule congressional visits and arrange for patients/family to attend their district visit. During the summer visits were made to Rep Heath Shuler, Rep Sue Myrick, and Rep Patrick McHenry with another Representative co-sponsoring the Tom Lantos Research and Education Act without even having a visit. To my knowledge NC has the most co-sponsors. Go Tarheels!
---Diane had her PH story published in FOCUS, a patient information magazine distributed to hundreds of physicians offices in the area.
---September 2009 we held our 4th NC Cure PH Golf Tournament. The golf pro suggested that we schedule 4-5 tournaments a year. It doesn't matter if we hold the tournament or not, just schedule it as they want guaranteed rain for the course. 72 golfers played as the rain fell all day long. Three of our four tournaments had rain. Is there a black cloud hanging overhead?
---October 09 was the second Board Meeting. Two friends traveled to DC with me. We drove up a couple days early to hit Capitol Hill. Diane tried to arrange a meeting with newly elected Senator Kay Hagan but it did not happen. We were encouraged to attend her "Wednesday Morning Coffee for Constituents." Only one other couple showed up thus we probably had more time with the Senator than if we had had an appointment.
---October 2009 John and I attended the first "Through Tears Comes Laughter" a PH event in Charlotte, NC. It was variety type show with musical groups and comedians (one from Comedy Central and the other from the Last Comic Standing). We laughed so hard we both cried. Glenn Johnson did a fantastic job of organizing this event. If I am not mistaken he is planning this event again for 2010. Without a doubt if you live anywhere near Charlotte, NC area, this event is a must.
---Sometimes you have an exceptional speaker at the support group meeting that after it is over you wished it had been taped. This was the case of our October 09 meeting. I met Dr Daniel Bensimhon, a cardiologist from Greensboro, NC (previously at Duke with Dr Tapson) maybe 2 years ago. I knew that if he ever agreed to speak to our group it would have to be taped. How fortunate we were to have him present on Right Heart Catherization with Invasive Exercise Testing. His presentation was so much more. It had a bit of history mixed with some humor and a ton of information regarding echo-cardiograms, R & L heart caths and exercise testing explained in a fashion that simplified grasping difficult concepts. Yes he takes wedge pressures during the exercise phase. It was amazing. Thanks Dr Dan!
---In November, a PH information table was again set up at Wake Forest University Baptist Medical Center. You would think the Advances in Pulmonary Hypertension had wings as they flew off the table as fast as they were replenished. This is good!!
---John and I traveled to northwestern PA to visit my mom who is in poor health. Our return trip took us via DC and we attended the 09 November PH Congressional Luncheon. This was a first for John. By the second congressional visit John was right in the thick of the conversation. This was good as he now knows that we do actually work when going to DC. LOL
John is a great guy. He calls himself the group's goPHer. Without his help and support, we could not accomplish half of what we do. He is literally our physical strength. Thanks John. Love You!
---Last, I recently contracted another fatal condition--might even be more serious than PH. I have become a "Twlight" junkie just in the past 2 months. Read all the books twice. Saw the first movie a bunch of times (actually have the DVD and the soundtrack). So far have only seen the second movie, "New Moon" once. I never liked vampire movies watching them with my dad as a kid. This series is slated to be the best love story since Titanic. Is there any hope for recovery doctor? LOL
Merry Christmas and Healthy New Year to all.
---Good shock of all shocks, I was asked to serve on the PHA Board beginning in January 2009. This is a definite honor. Attended the first meeting in Orlando February 2009--truly a learning experience. There is so much behind the scene work that makes the PHA organization work like a fine-tune, oiled machine. The dedication and commitment of the physicians, staff, volunteers , patients, families and friends to find a PH Cure is beyond remarkable.
---Our group again participated in the spring Belk's Charity Day. This is an easy fundraiser with no cash out of pocket. Anyone who has a Belk's in their area can contact the store office to getout details. They hold a spring and a fall charity day.
---May 2009 we held our second 5K PH walk/run. Even with the rain we had 40 participants and raised $10,000 for PH research. The new PHA calendar arrived today. Diane is the one holding the sign, "I walked 5K for PH.
---Traveled to California to the 2010 Conference Hotel to help with logistics planning. The conference is going to be awesome. Again there is so much work that goes into pulling off a quality event of this magnitude. You will just love it. Even John is planning to attend conference this time. I think Disneyland was more a pulling force than PH. LOL He is still a kid at heart.
---Diane Ramirez again arranged congressional visits in NC expanding outside of our group's representatives. Diane contacted other support group leaders in NC, schedule congressional visits and arrange for patients/family to attend their district visit. During the summer visits were made to Rep Heath Shuler, Rep Sue Myrick, and Rep Patrick McHenry with another Representative co-sponsoring the Tom Lantos Research and Education Act without even having a visit. To my knowledge NC has the most co-sponsors. Go Tarheels!
---Diane had her PH story published in FOCUS, a patient information magazine distributed to hundreds of physicians offices in the area.
---September 2009 we held our 4th NC Cure PH Golf Tournament. The golf pro suggested that we schedule 4-5 tournaments a year. It doesn't matter if we hold the tournament or not, just schedule it as they want guaranteed rain for the course. 72 golfers played as the rain fell all day long. Three of our four tournaments had rain. Is there a black cloud hanging overhead?
---October 09 was the second Board Meeting. Two friends traveled to DC with me. We drove up a couple days early to hit Capitol Hill. Diane tried to arrange a meeting with newly elected Senator Kay Hagan but it did not happen. We were encouraged to attend her "Wednesday Morning Coffee for Constituents." Only one other couple showed up thus we probably had more time with the Senator than if we had had an appointment.
---October 2009 John and I attended the first "Through Tears Comes Laughter" a PH event in Charlotte, NC. It was variety type show with musical groups and comedians (one from Comedy Central and the other from the Last Comic Standing). We laughed so hard we both cried. Glenn Johnson did a fantastic job of organizing this event. If I am not mistaken he is planning this event again for 2010. Without a doubt if you live anywhere near Charlotte, NC area, this event is a must.
---Sometimes you have an exceptional speaker at the support group meeting that after it is over you wished it had been taped. This was the case of our October 09 meeting. I met Dr Daniel Bensimhon, a cardiologist from Greensboro, NC (previously at Duke with Dr Tapson) maybe 2 years ago. I knew that if he ever agreed to speak to our group it would have to be taped. How fortunate we were to have him present on Right Heart Catherization with Invasive Exercise Testing. His presentation was so much more. It had a bit of history mixed with some humor and a ton of information regarding echo-cardiograms, R & L heart caths and exercise testing explained in a fashion that simplified grasping difficult concepts. Yes he takes wedge pressures during the exercise phase. It was amazing. Thanks Dr Dan!
---In November, a PH information table was again set up at Wake Forest University Baptist Medical Center. You would think the Advances in Pulmonary Hypertension had wings as they flew off the table as fast as they were replenished. This is good!!
---John and I traveled to northwestern PA to visit my mom who is in poor health. Our return trip took us via DC and we attended the 09 November PH Congressional Luncheon. This was a first for John. By the second congressional visit John was right in the thick of the conversation. This was good as he now knows that we do actually work when going to DC. LOL
John is a great guy. He calls himself the group's goPHer. Without his help and support, we could not accomplish half of what we do. He is literally our physical strength. Thanks John. Love You!
---Last, I recently contracted another fatal condition--might even be more serious than PH. I have become a "Twlight" junkie just in the past 2 months. Read all the books twice. Saw the first movie a bunch of times (actually have the DVD and the soundtrack). So far have only seen the second movie, "New Moon" once. I never liked vampire movies watching them with my dad as a kid. This series is slated to be the best love story since Titanic. Is there any hope for recovery doctor? LOL
Merry Christmas and Healthy New Year to all.
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