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Author Topic: Great Advocacy Opportunity in Support of HIV Cure and Aging Research  (Read 20244 times)

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Offline Tim Horn

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  • Posts: 799
Treatment Action Group (TAG), a New York City–based organization of activists, is urging advocates from all 50 states to join a leadership network that will work closely with members of Congress to advance aging- and cure-related HIV research. The initiative will begin with a three-day gathering October 11 to 13 in Washington, DC, for which scholarships are available.

http://www.aidsmeds.com/articles/hiv_cure_aging_1667_21007.shtml

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #1 on: September 07, 2011, 11:32:32 PM »
Hey All - Great News -

I just received confirmation that I have been selected to receive a full scholarship to partiicipate in the Treatment Action Group's What Would You Do For A Cure Initiative.

36 people were selected out of 350 applicants to participate.  I will be flown to DC in mid October for two days to meet with Congressional representatives and/or their staff to advocate for HIV/AIDS research and treatment.

I will participate in a few conference calls prior to going to DC.

I am so excited to be able to be able to go to DC and advocate on behalf of all people with HIV/AIDS.

Did anyone else find out that they had been selected to participate? 

Thanks Tim for posting the info - I filled out the application right after it was posted and thought that I hadn't got selected --- I am smiling so hard right now --- very happy and very excited!
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline buginme2

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #2 on: September 07, 2011, 11:44:02 PM »
Congratulations, what an honor.   That's so awesome!
Don't be fancy, just get dancey

Offline leatherman

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #3 on: September 07, 2011, 11:52:49 PM »
WooHoo Phildin!!  ;D What an honor and opportunity!
You gotta follow up here with pictures and stories when you get back ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Online Miss Philicia

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #4 on: September 07, 2011, 11:53:05 PM »
Congrats!
"I’ve slept with enough men to know that I’m not gay"

Offline anniebc

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #5 on: September 08, 2011, 01:06:58 AM »
Phil that's wonderful news, look forward to hearing how it all went when you get back..proud of you.

Aroha
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #6 on: September 08, 2011, 01:14:30 AM »
Thanks everyone for the comments and support -- as always.

I will definitely keep everyone informed - post pics, and share info....

They expect that participants will fully be involved upon returning to their home states --- sending out Action Emails, participating in events, advocacy, etc.  ---- which I fully plan on doing.

I feel like I have won the lottery --- LOL

I am so happy to be able to be a part of an initiative such as this. 

Just another reason or example of being HIV+ does not have to be a negative in life - and that "a silver-lining" can be found in any cloud.

 :)
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Rev. Moon

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #7 on: September 08, 2011, 01:16:20 AM »
Congrats, Phil  :)
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #8 on: September 08, 2011, 01:17:17 AM »
Thanks Rev -
and your avatar is still freaking me out   ;)
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Online Jeff G

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #9 on: September 08, 2011, 02:18:24 AM »
Congratulations !

Offline emeraldize

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #10 on: September 08, 2011, 07:53:20 AM »
Great news! Thank you for being willing to do this.

Offline wolfter

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #11 on: September 08, 2011, 07:56:20 AM »
That's awesome. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Tim Horn

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #12 on: September 08, 2011, 08:23:03 AM »
That really is awesome. You've got a great deal of work cut out for you -- we're really coming on a do-or-die situation in Congress -- and it sounds as if you're going to be working on this campaign with some top-notch folks. The TAG gang are among the best and brightest and I'm sure you're going to find the experience fulfilling.

Best of luck... and definitely keep everyone updated in the Forums.

Tim

Offline hope_for_a_cure

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #13 on: September 08, 2011, 08:35:36 AM »
I will participate in a few conference calls prior to going to DC.

I am so excited to be able to be able to go to DC and advocate on behalf of all people with HIV/AIDS.


Thanks for going that extra mile to make a difference Phil!  You are 'De Man' !!!

Offline WillyWump

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #14 on: September 08, 2011, 10:23:58 AM »
Excellent! Good luck Phil!

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #15 on: September 08, 2011, 10:25:35 AM »
Great news, Phil. I bet you'll be really good at this - you certainly have the determination. Keep us posted, ok?
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline JustinV

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  • Posts: 8
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #16 on: September 08, 2011, 11:43:53 PM »
Sounds really cool, and what I am sure will be an incredible experience.  :) Best of luck!!!

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #17 on: September 09, 2011, 10:45:25 AM »
Thanks for the positive comments and support everyone.

I got the approval today from my employer to take off the three days necessary to participate in Washington DC at the TAG initiative.

My supervisor is extremely supportive and will also be allowing me time to participate in the various conference calls and webinars associated with the project.

I am very fortunate to have an employer who knows of my condition and is supportive and makes sure that I don't have any barriers that prevent me from fully functioning on my job; maintaining my treatment; and participating in advocacy related to research and treatment.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline YaKaMein

  • Member
  • Posts: 368
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #18 on: September 10, 2011, 01:29:34 AM »
Fantastic Phil !! It's a great opportunity to broaden the fight and the scope. Work Hard and learn. Glad you've been accepted. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #19 on: October 08, 2011, 01:37:59 PM »
Packing this weekend to get ready to leave on Tuesday for TAG's What Would You Do For A Cure initiative in Washington D.C. 

We have had several conference calls and webinars in preparation for the visit - where we will meet with congressional representatives and/or their staff to advocate for continued (and hopefully increased) funding for HIV cure-related and aging research.

TAG has been great on preparing participants - via provision of scientific information on current status of research and funding, benefits  of continued funding, and talking points.

I am looking forward to carrying a personal message infused with scientific and economic basis for supporting targeted research funding that will not only benefit those of us living with HIV/AIDS, but those not yet infected, and society in general (as HIV cure-related research and aging research has also produced benefits for those who are not positive).

I will provide a full report (hopefully with pictures to accompany) upon my return.  I'm excited about having an expanded role as an advocate and activist for this cause and can only hope to have the impact that others who have walked this path before me and who continue to be vocal (such as Peter Staley, Tim Horn, Jan, Mark Harrington) have had on advancements in treatment, policy, and support.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline anniebc

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  • Posts: 5,956
  • AM member since 2003
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #20 on: October 08, 2011, 06:45:24 PM »
Travel safe Phil and look forward to hearing from you when you get back.

Aroha
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Online Jeff G

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #21 on: October 08, 2011, 07:16:59 PM »
Have a wonderful trip Phil ! .

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #22 on: October 13, 2011, 11:47:14 PM »
Just got back a few hours ago from our nation's capital - Washington D.C. - and Treatment Action Group's What Would You Do For A Cure? legislative action initiative.

It was an unbelievably incredible two days.  I got to visit so many senators and members of congress and legislative assistants.

I will have a full report with some pictures included.

Right now, I have to get to bed -- back to work tomorrow - but, I will say that I have such a high level of energy and feel so empowered right now. 

Everyone we met with was very supportive.  They listened, asked questions, and opened the door for ongoing dialogue and follow-up.

The people that we there representing other states were also amazing.  Us "poz" people are an extremely amazing and gifted bunch!

I will post more in the next few days.  I'm exhausted, but wish I had another few days in the capital - and will be going back soon.

-Phil (who loved walking the halls of the Senate building and House of Representatives)
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Online Jeff G

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #23 on: October 14, 2011, 12:14:19 AM »
Welcome back ! . Cant wait to see the pix and hear more about your trip .

Offline I_care

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Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #24 on: October 24, 2011, 11:25:47 AM »
It would be really cool to hear more about the trip to DC....

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #25 on: October 24, 2011, 11:36:51 AM »
It would be really cool to hear more about the trip to DC....

Hi I_Care:

I put the details of the trip to D.C. in the thread post below:

http://forums.poz.com/index.php?topic=40203.0

Thanks!
Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline AlexMerida

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  • Posts: 28
Re: Great Advocacy Opportunity in Support of HIV Cure and Aging Research
« Reply #26 on: October 25, 2011, 11:38:02 AM »
Hi  Tom  I  am new and I do not know how to post a new subject.



can we  do something... in order to move cure-related research  forward as quickly as possible
Can we use social networks in orde to make pressure as it has happen
in other issues in other part of the world soscial networks mada history (Spain, Egypt, Chile, ect)
we have to organize and give money to the researchers in order to catalyze the new promising therapies.. watch the work of abzyme form Professor Sudhir and the work of prof Loyter with the mix. They are the only one who have succeded in controling and erradicatins HIV but they need dollars and the big pharma...we are the only interested..we do not have much time
As as community we need to stay involved ……
The benefits we have in our  life today  with ARV are because people took risks
I am totally new in thes matter i jus habe been diagnosted and about to start ARV,
Does any one know the work of zacha Bennet for Abzyme
I contat Yissum the company who will comercializa the invetor of Dr. Loyter adn they told me that they are working on that..in fact de do not have any pharma interested.
so is is been 30 years and is time to belive.
the  govetment has done is part but what about us?
Many people are in the confort area...but would ask them iwaht can you give if you have the chance to be one day free of HIV..is is possible but we have to cataliza it

At the end Yissumm replied to me and told me that it will take many years before this  product is will appearde in market,,

Much people say to me : You will get used and told me that they do understand and felt that way when they were new.
And  with time I am going to get used  that they already have been but
That I have to move on, that there are many good drugs
I am  Mexican I do not have to worried since in Mexico medications is free, but what about the rest ?
that throughout the time there have been arisen histories like this, that in Internet there is much sweepings, that is not worth
Finally I request an excuse to them if offend to somebody with my thoughts, but I feel that we do not have to remain in the zone of comfort nobody is going to do something by us if we do not do we ourselves.
Can we done something like Zacha is doing with to support the research of Prof Loyter
I am a researcher in the area of polymers and there are two kind of work.
Scientific Work that is called Basic science.. we still need more focus in HIV
But what is more important we need technological development…which is based in Basic Science but technological development has impact in common people

It must have a change ..... in this  labyrinth we needed to move more express



 


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