Alive with West Nile Advocacy Group Awarded

Alive with West Nile Approved for a $15,000 Award by the Patient-Centered Outcomes Research Institute


May 1,2015 – Alive with West Nile has been approved for a $15,000 award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project on Partnership Development of West Nile Virus Survivors, their Caregivers, and Researchers.


Alive with West Nile will use the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of individuals and groups who share a desire to advance patient-centered outcomes research focused on Partnership Development of West Nile Virus Survivors, their Caregivers, and Researchers.


Pipeline to Proposal Awards enable individuals and groups that are not typically involved in clinical research to develop the means to develop community-led funding proposals focused on patient-centered comparative effectiveness research (CER). Established by the non-profit PCORI, the program funds three tiers of awards that help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.


PCORI Tier I funding will allow us to nationally seek and develop relationships with interested researchers and other stakeholders, as well as expand and provide a formal infrastructure to our patient and caregiver community. Once these relationships are established, we will build and engage these collaborations through a patient advocacy group (PAG) and an executive committee. The PAG will work on the development of a draft survey tool that will be used to gather information on a desired patient-centered comparative effectiveness research question regarding the quality of life of WNV patients. We are extremely excited and hopeful for the results we anticipate will help WNV survivors through this Pipeline to Proposal award. Read the full summary here.



“The Pipeline to Proposal Awards program is a manifestation of PCORI’s commitment to the meaningful involvement of patients, caregivers, clinicians, and other stakeholders in all our research endeavors,” said Jean Slutsky, PA, MSPH, PCORI’s Chief Engagement and Dissemination Officer. “It provides support to those who may not otherwise have an opportunity to contribute to the field of comparative effectiveness research. We’re pleased to follow the awardees’ progress as they develop partnerships and begin to form research questions.”


PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

Alive With West Nile Virus Forum

Hello West Nile Virus Survivors!

We are alive!

There is now a Forum on this site to assist you in connecting with others outside of facebook.  We are trying a forum out and will go through some growth with time so please be patient.  We value your input so if there is something you require from the forum let us know and we will work on it.

You must register to enter the forum as this creates profiles to allow a safe environment.  When you are ready to join us go register or log in at the picture Join AWWN Survivors on the right side bar or Forum tab.

A few guidelines:

Be compassionate with each other, as we all are going through the same illness challenges.

Be supportive in a neutral environment to all needs.

We will moderate and if content is not supportive we will pull it.

If you see something that is not supportive let us know to help the community.

The rest we will make up as we go.


Tell us how you Won Today!


You Have West Nile Virus… Now what?

I was talking with a friend the other day about their son having west nile virus last summer.  He was sick for a month and then fine.  As I told her my story and that it is a chronic illness she had more questions.

If I have no signs is it gone?  We do not know.  From my experience and stories of others symptoms can come and go with stress or other illnesses.

Can I become infected again?  We do not know.  I believe I was infected a 2nd time because I had the same reaction on my arm as the first time.   I did not see any new symptoms.   There are a few others that also report being infected a 2nd time with new symptoms.

I felt great for months or year and now fell horrible, is it back?  There seems to be a wax and wan to wnv.  Stress aggravates it.  Keeping a journal will help with looking for signs of early relapses or triggers that you can avoid in the future.

Is it chronic?  The CDC said in 2009 that West Nile Virus was a chronic disease.

Will I always be sick?  In my experience having a strong body and immune system helps keep the virus at bay or rather the symptoms.  As long as I eat the foods that nourish my cells and support my immune system my symptoms stay away.

These are only a few question that came up in conversation.  If you have a question to add leave it in the comment below and we will get back to you.

Wish all well


Social Challenges with Chronic Illness and WNV

Social Challenges

With a chronic illness the body goes through changes that takes you out of society due to dizzy, light sensitive, paralyzed or blind to name a few.   How do you reintegrate once your health is back to normal?  Is it as easy as going to a party or park?

It starts with baby steps.  First going to a friends house for a brief meeting.  Second going to a group event that you feel safe in.  Third finding a group meeting that test your social stability.  Here you may course correct to be stronger at the next event.

You must learn to listen to your body and when it says leave to go rest that you listen to it.  The first group gathering I went to my body went into an anxiety attack after 15 minuets of stimulation.  The nervous system was over taxed.  The longer I stayed the higher the probability of having a relapse of WNV occurred.   This in turn made the event not so fun and not wanting to participate in an event again.

When I set a timer on my phone for 15 minuets to leave, listened to my body and left the event it was a pleasurable experience.   I was more likely to go to a group event again.

Review of social networking tips:  1.  take baby steps and start with events that are safe to you

2. Add events with more people and more activity gradually

3.  Listen to your body and when to go rest

4. Have Fun!!



 “All too frequently, anxiety crushes not only your spirit and your potential, but your ability to take care of your mind and body. “ ~Jonathan Davidson and Henry Dreher, The Anxiety Book: Developing Strength in the Face of Fear


One more great quote:

“Nerves and butterflies are fine – they’re a physical sign that you’re mentally ready and eager.  You have to get the butterflies to fly in formation, that’s the trick.” ~Steve Bull


Leave us a comment and tell us how your social event experience was.

GIS tracking of West Nile Virus

Technology to Help Track WNV

The West Nile Virus (WNV) season is starting to heat up, although states like California have already seen human cases earlier in the year.   The current surveillance systems used by counties are people going out to sites trapping mosquitoes and bringing them back to a lab to be processed for WNV sampling.  With our vast amounts of technology, why are there not better surveillance systems for mosquitoes?


There is technology out there to track possible WNV mosquitos.   Like many technologies it gets lost due to funding or lack of confidence in the people.   There is a man in Texas that has a passion to help people be protected from WNV.   There is a website he has created with current maps of mosquito activity by state and city.  Frio Nature Conservancy (FNC) uses information from DNA testing, satellite imagery and Doppler Radar, capable of tracking the mosquito activity.  Those areas can be further tested, sprayed or people made aware of mosquito activity in the area to avoid.

This system is known as GIS.  GIS, also known as Geographical Information System, allows us to analyze, interpret, and understand data so we can visualize how it will help us in the future or present.   This mapping system has been used for analyzing NY City flooding, St Kitts land use, and Ft Collins City map in real time.   Why not use it for west nile virus mosquito surveillance?

It is People like John of FNC creating surveillance systems like this that create data to help an area respond sooner to WNV mosquito activity.  The outcome would possibly be less human cases.

Go check out Frio Nature Conservancy at


      The Survivors can make a difference – we just have to keep spreading the word.”   ~ John R