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In a message dated 5/8/2003 1:53:50 AM Eastern Daylight Time, Camachoent writes:
In a message dated 5/7/2003 9:28:47 AM Eastern Daylight Time, jazzydeb6@... writes:
Dear Friends, Would any of our list members who are in D.C. for BTAW take a moment and update us on how things are going?
I know things wrap up today. But I thought if someone has a lap top along and has a minute, they could send us some thoughts, observations, feelings, whatever ... any make us all feel as if we are there in some tiny way.
Thanks very much, Debra
Hello Debra and Meningimates!
Just got back this afternoon from D.C. where we had a very busy but productive BTAW.
I arrived in time to represent the meningimates in the 5K race on Sunday morning. However, I was the only one there from this list and I thought of all of you and our struggles as I walked or ran. I thought of Carla, myself and the rest of you battling this disease and much work is still left for us to do. So, I ran with a combination of anger, determination, and hope. Does that make any sense to you guys? At times I was propelled to run as fast as I could because I felt that if I gave up, I would give up on myself and my fight to beat this. Unlike last year, I did NOT come in last!! When I came in, my name was announced over the loudspeaker and I felt like I had accomplished something even though I was among the last group to cross the finish line! It was very emotional for me and just had to sit and have a good cry. It was quite an experience. Those who ran it last year, Cindi, Robin, Kathi, and Charlotte would know what I mean.
The reception at the Canadian Embassy was a great opportunity to mingle as well as to hear the encouraging words of Dr. Howard Fine and Dr. Rolando Delmaestro, who became teary eyed as he closed his speech with genuine feelings of concern for the entire brain tumor community.
Lobbying went pretty well. I was able to arrange an appt. with Congressman John Conyers Jr. from Michigan, through Joel Segal, his Legislative Assistant whom we had met the night before at the Canadian Embassy and who had shown interest in healthcare and other issues. Our meeting went very well. We were able to stress on our need for increased federal support for brain tumor research and the Benign Brain Tumor Cancer registry act. We also asked for support legislation to waive the two-year waiting period for Medicare eligibility.
I also met with Angela Ramirez, legislative assistant to Rep. Joseph Crowley who was very sympathetic, attentive, and receptive to my own story as well as the issues I was presenting. I pulled off my wig, (yes, again!) to show her the gravity of the situation and the urgent need for funds and immediate legislation. She gasped, said "oh my God", as I explained that it was not my intention to startle her. Then again, I have been "startled" practically my whole life living with brain tumors, Mri's and results.
A few of us met for dinner at a Thai restaurant and were able to toast, at last, to the passing of the Benign Brain Tumor Registry Bill. For me it was the climax of all the hard work we'd done under the direction of Lloyd Morgan a wonderful human being with a mission, and his dear wife.
There is still additional work to be done as we must still all strive towards increasing awareness.
It was great sharig a room with Cindi and with Christy, who joined us in our room the nite before we flew back. We laughed, we cried, we hugged, laughed some more and were more determined than ever to continue the fight against brain tumors. We sang all night. Practically anything that popped into our heads. From hits from the 50's and 60's to Mickey Mouse Club songs and last but certainly not least, I was put to sleep by Cindi's and Christi's lullabies!
Take it from here guys!
Love ya all,
Delia
malignant meningioma
surgeriesX6
radiation therapy
gamma knife
other treatments
WE SHALL OVERCOME
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Camachoent@...
Camachoent@...
 Send Email
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In a message dated 5/7/2003 9:28:47 AM Eastern Daylight Time, jazzydeb6@... writes:
Dear Friends, Would any of our list members who are in D.C. for BTAW take a moment and update us on how things are going?
I know things wrap up today. But I thought if someone has a lap top along and has a minute, they could send us some thoughts, observations, feelings, whatever ... any make us all feel as if we are there in some tiny way.
Thanks very much, Debra
Hello Debra and Meningimates!
Just got back this afternoon from D.C. where we had a very busy but productive BTAW.
I arrived in time to represent the meningimates in the 5K race on Sunday morning. However, I was the only one there from this list and I thought of all of you and our struggles as I walked or ran. I thought of Carla, myself and the rest of you battling this disease and much work is still left for us to do. So, I ran with a combination of anger, determination, and hope. Does that make any sense to you guys? At times I was propelled to run as fast as I could because I felt that if I gave up, I would give up on myself and my fight to beat this. Unlike last year, I did NOT come in last!! When I came in, my name was announced over the loudspeaker and I felt like I had accomplished something even though I was among the last group to cross the finish line! It was very emotional for me and just had to sit and have a good cry. It was quite an experience. Those who ran it last year, Cindi, Robin, Kathi, and Charlotte would know what I mean.
The reception at the Canadian Embassy was a great opportunity to mingle as well as to hear the encouraging words of Dr. Howard Fine and Dr. Rolando Delmaestro, who became teary eyed as he closed his speech with genuine feelings of concern for the entire brain tumor community.
Lobbying went pretty well. I was able to arrange an appt. with Congressman John Conyers Jr. from Michigan, through Joel Segal, his Legislative Assistant whom we had met the night before at the Canadian Embassy and who had shown interest in healthcare and other issues. Our meeting went very well. We were able to stress on our need for increased federal support for brain tumor research and the Benign Brain Tumor Cancer registry act. We also asked for support legislation to waive the two-year waiting period for Medicare eligibility.
I also met with Angela Ramirez, legislative assistant to Rep. Joseph Crowley who was very sympathetic, attentive, and receptive to my own story as well as the issues I was presenting. I pulled off my wig, (yes, again!) to show her the gravity of the situation and the urgent need for funds and immediate legislation. She gasped, said "oh my God", as I explained that it was not my intention to startle her. Then again, I have been "startled" practically my whole life living with brain tumors, Mri's and results.
A few of us met for dinner at a Thai restaurant and were able to toast, at last, to the passing of the Benign Brain Tumor Registry Bill. For me it was the climax of all the hard work we'd done under the direction of Lloyd Morgan a wonderful human being with a mission, and his dear wife.
There is still additional work to be done as we must still all strive towards increasing awareness.
It was great sharig a room with Cindi and with Christy, who joined us in our room the nite before we flew back. We laughed, we cried, we hugged, laughed some more and were more determined than ever to continue the fight against brain tumors. We sang all night. Practically anything that popped into our heads. From hits from the 50's and 60's to Mickey Mouse Club songs and last but certainly not least, I was put to sleep by Cindi's and Christi's lullabies!
Take it from here guys!
Love ya all,
Delia
malignant meningioma
surgeriesX6
radiation therapy
gamma knife
other treatments
WE SHALL OVERCOME!!
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Camachoent@...
Camachoent@...
Send Email
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