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an idea for research funding

 
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sun Apr 28, 2013 7:00 pm    Post subject: an idea for research funding Reply with quote

This came to me in conversation with Linda tonight. We should urge stores in areas with vf epidemics to do a round up to next whole dollar program for valley fever. It would be a start and more importantly the people in the affected areas will be invested. Maybe I am desperate and hate the idea of waiting for a cure due to lack of funding. I just keep thinking of all the times I have been asked for multiple other causes and have contributed. As I said, it may not be a good idea versus one of desperation.
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Mon Apr 29, 2013 5:31 am    Post subject: Reply with quote

I wonder who decides which disease or condition gets charity drives at the supermarkets? It may be a decision made outside of Arizona. But I DO SEE charity drives at my local Safeway for a specified local food bank at Christmas. It seems to me that if local drives like that are possible, that VF should be a possibility as well. I wonder, though, whether the public would be as inclined to contribute. Most people I know think that "Valley Fever is nothing". My son has lived in AZ for 30+ years and I'm the only person he's ever heard of with it.

I like your idea though, and I think I'll poke around at the local Safeway to find out who to contact about it. You know, they promote health by offering 10% discounts on food purchases with a flu shot. We'll see.
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Mon Apr 29, 2013 6:59 am    Post subject: Reply with quote

I think the fundraising is done based on awareness weeks. For example, breast cancer, heart disease, and others. There is a need for some real life vf commercials like the tobacco companies had to run. I think an in your face approach would get people interested. If we could convince local stores to do this for a year, we would be off to a great start. I know how bad vf can be personally and as nurse helping patients. There is so much focus on the acute symptoms of vf and too little emphasis on the chronic disaster it becomes. When people realize the truth they will be happy to donate. I would be so happy to see Arizona run a in your face commercial that cannot be ignored and sparks communication.
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Mon Apr 29, 2013 9:13 am    Post subject: Reply with quote

My sense is that the state and the businesses operating in it have a direct interest in keeping a very low profile regarding Valley Fever. Otherwise, people like me wouldn't move here to buy homes, goods and services. So we'll see how much support we'll find. In fact, I realize that my own home wouldn't sell very well if buyers understood Valley Fever. Isn't that ironic? It's actually not in property owners' interests to inform them!

To me, it's remarkable that people are compelled to advise new home buyers of construction defects, airport noise, etc. when selling their houses here, BUT NOT THAT MARICOPA COUNTY IS A HOTSPOT FOR VALLEY FEVER. That kind of information will never be a required disclosure. Too much at stake.

So this is the maddening/frustrating thing about VF. Unlike almost all other illnesses which have genetic, systemic, age/gender/race-related causes, etc., Valley Fever is glued to GEOGRAPHY. That's precisely why it's kept quiet which, in turn, reduces awareness, compassion, and funding.
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Mon Apr 29, 2013 11:28 am    Post subject: Reply with quote

Linda,
I know you are righ... exposing the truth would hurt arizona and other epidemic areas temporarily. Temporarily meaning they pushed to fund research for a cure and it was successful. With all the red tape involved in new drugs, human studies, and getting the FDA approval would take years. The longer they hide behind the idea that this is a mild disease it just will look worse as number of victums grows.
just having a difficult day. I have awful pain and swelling around my thoracotomy scar. It hurts to sit not to mention move. As with many people im sure... the worse the symptoms/complications/side effects the more desperate you are for swift action by the state to inform and support vf efforts.
I agree with you regarding construction and lack of warnings about implications. My last job was in the center of a construction area as they built the new hospital and had issues with the ventilation system. When the state was notified of the ventilation issue, the hospital had system repaired. I failed to mention the people fixing the system had filtered masks and staff/patients where exposed to the mold and debris falling from the cieling. When i worked in other states, units were closed during such work. I think the issue at the hospital was the facility/repair company not the state. However, it took the state over a month to reply and only after a staff member was hospitalized for another mold related illness.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Tue Apr 30, 2013 6:49 am    Post subject: Reply with quote

I like these suggestions. Since we are an all-volunteer organization, help in the endemic areas would be tremendously welcome.

We also are considering the way billboards might possibly be used. They could warn people about Valley Fever by sharing more useful information than typically done on pamphlets and news blurbs. Since we currently have no funding we would be looking for ways to raise money for that as well.

If someone would like to be a part of this effort, please contact us at voiceforaction@valleyfeversurvivor.com and let us discuss what we can do.

All my best,
_________________
David Filip
Co-Founder of www.valleyfeversurvivor.com
Co-Author of "Valley Fever Epidemic"
www.valleyfeverepidemic.com
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Tue Apr 30, 2013 8:07 am    Post subject: Reply with quote

David,
Thank you for the positive feedback. I have looked into various forms of free advertisement. Facebook and various other websites offer free advertising for nonprofit groups. Additionally, you can get free public service announcements on TV and radio esp during awareness weeks/months.
I still have some research connections from my experience with research nursing. Often there are contests or competitions to receive grant money. They just need proposal. I have experience writing such proposals and if I can find anything would be happy to.
I agree with Linda I understand arizona not wanting to post the truth about vf but they would look like a role model if they fought for a solution instead of hiding the issue.
Jenn
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