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Author Topic: News from an Old Friend: Announcing Website Launch-Zephyr Foundation!  (Read 3531 times)

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Offline zephyr

  • Member
  • Posts: 457
    • Zephyr L.T.N.P. Foundation, Inc.
To the AidsMeds Community--

Around three years ago I tentatively joined AidsMeds, the very first on-line community I had ever participated in. I say tentatively because I was living HIV+ in a red-neck town and scared to death that my status would be found out and that I would lose my little landscape business. After a few nervous posts to some very lovely 'strangers' over 6 months or so, I realized I had found a special community....one I had longed to find for over 13 years, since my diagnosis in 1992.

I know that my life was changed forever because of the friendships I found, and part of the wonder of AidsMeds in 2005 was the incredible generosity of the membership to send $5 and $10 donations to me (via a Pay Pal) account for my first trip to the National Institutes of Health in April of 2006, and then again in June the same year, to enroll into the Long-Term Non-Progressor Study they were conducting.

Peter Staley, Tim Horn & Andy Velez were kind to allow those donations to happen back then, and I have never forgotten the special way they worried about me if the IRS should discover the funding 'stream'. Another member named our small campaign (which amounted to $200 the first trip, and $400 the second trip - an amount shared with OzPaul at the time) the 'Zephyr Foundation', which touched me deeply--his name was waterduck, from Thailand.

These research trips were so important to me, since Dr. Bruce Walker had deemed me an 'elite controller' of HIV back in 2004, and I had begun to understand the implications of my 'long-term control' of this dastardly virus, and the potential benefits to the infected/affected community as a whole---should they figure out exactly how my body was warding off the advances of this unwelcome parasite.

Random acts of kindness have a way of sparking good events..........little did I know that my heart would be captured by so many wonderful people, and inspire me to dedicate the rest of my natural life (Great Spirit willing) to being the outspoken (and publicly disclosed) Treatment & Research Advocate I am today. In fact, so complete was the transition, I retired this spring from my landscape design business and accepted a job in the HIV/AIDS field! It is a privilege to tell you that in two days, I will make my debut as the new Camp Director for Camp Sunburst, the precedent-setting summer camp for children & youth living with HIV/AIDS.

But that is another story, and my comfy bed is calling. What I wanted to let everyone know is this:  That after twenty-six months of keeping the faith and working hard, last night was the 'soft-launch' of the website for the Zephyr Foundation!!!! It is my sincere hope to try to locate more 'HIV Controllers', wherever they might be, to expand the clinical research studies that focus on us, to educate those who are interested in the topic, and to eventually connect some of us (in person) to compare notes about our lives face-to-face.

Please take a look -- http://www.zephyrfoundation.org  -- and hold tight to the dream right along with me.......that one day, soon, the mystery will be solved, and with the solution, the development & delivery system for a 'control ' that anyone can have against this scourge.

My best to the AidsMeds 'old' guard, and to the 'new',


"It is character that communicates most eloquently."

Offline Peter Staley

  • Member
  • Posts: 1,338
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Zephyr -- great hearing from you!  And congrats on the launch of your foundation and website.

You should be proud!


Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Congratulations, Zephyr! The site will no doubt prove to be an invaluable resource.

"But that is another story..." Please share that story with us at some point; I would love to hear about Camp Sunburst.

Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
zephyr, hopes you feel blessed ;)

I hopes you will succeed.

Also, a big congrats to those who have help you financially.
Those who did so are not only suffering, but acting and have keep a good heart.

It should be normal to support others, but despite that, it's unusual since almost ever.

Offline bobino

  • Member
  • Posts: 264


Congrats on the Zephyr Foundation.  I'm truly moved and inspired by all you've done for those of us suffering with this virus.

As you know, I'm already part of a couple of controller studies, but if I can do anything else, just ask.  Meanwhile, I'll keep my eye on your foundation's web site for updates on your work, and I'll look for ways in which I can lend a hand.

Thanks again for all you do.

Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline YaKaMein

  • Member
  • Posts: 368
How exciting for you. Great story. I love new beginnings.  -YaKaMein

PS: Am a newbie myself to all this, but may have met a couple of people who might fit that study. I'll let others know of the foundation and the study.
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


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