Living with Food Allergies, 2013 and on

[CMdeux]

At least the rain has knocked the pollen levels down.   So that part is good.

[spacecanada]

That moment when you read your travel medical insurance and realise your last severe reaction was within the timeframe that could void or complicate the insurance. But then realize they never gave me oxygen so despite being in hospital, I should be in the clear. The restriction specifically states emergency requiring oxygen. Phew!  (My oxygen levels were consistently 100%, which I was told is unusually high for even a normal healthy person, yet alone one with asthma who just experienced anaphylaxis. Counting my lucky stars there.)

[LinksEtc]

I saw Homa tweet this today:

Anyone know how to obtain financial records for a non-profit short of a FOIA request? Doing some research re: #foodallergy non-profits.

I'm thinking somebody here probably knows the answer.

BTW, I have no idea what she is up to.  Unpredictable, that one is.

[ninjaroll]

Financial records is pretty broad request. The best starting point would be their 990 or any other open source disclosure. I'm not sure FOIA is the tool for say their internal controls if they don't publish them, or how much redaction would erode the purpose in seeking whatever it is one would seek. Ask me a year from now and I'd have more in depth answers.

Not so ha-ha funny to see a FOIA production about 80% redacted. Try IRS home page after exhausting open source options.

Tell you what. Send me a PM on which one then let me see what I dig up if you want... when I have the time.

[LinksEtc]

Ninjaroll,

If it's ok with you, I'll reply to her tweet referencing your post ... then you 2 can pm ... I know I keep saying it, but I've got to cut back on FA stuff ... I don't want to get involved except to connect her w/people who can help.

[ninjaroll]

Sure, tweet away. I've got a name for her to reach out to: Scott A. Hodes. He's got an everything FOIA blog. If she needs to name the connection it's related to American Society of Access Professionals. They should be able to chat. He's one of the presenting experts at the ASAP workshop in Denver. I'd hit him up before he takes off for the workshop to follow up with any remaining specific questions his blog doesn't address.

[LinksEtc]

Thanks NR.   


-------



This is not a FA story, but a health one ... close enough I guess.

My mom told me the other day that she "pulled a Karen"  ...

what does this mean, you might wonder?

She had to go to the ER again ... but she went this time fully armed w/her recent medical history ... the doc would ask her a ?, and she'd whip out a scan or a test result ... well prepared, she was.  Turned out to be something minor & she got to go home.

I'm not sure what to think about this being named after me.





Hmmm ...


One of our former docs (lovingly, I like to think) called me "the historian".



I'll take one of these again =>   

[YouKnowWho]

I learned today the daycare at the gym has stock epi (jr and sr) on hand.  I usually just hand the med bag over to the girl at the counter (they are aware of the kids allergies).

Turns out they are epi trained, CPR trained and basic medical emergency trained.

Why do I feel better about the gym daycare than the school?  (Nurse excluded on training but no stock meds).

[hsw24]

Financial records is pretty broad request. The best starting point would be their 990 or any other open source disclosure. I'm not sure FOIA is the tool for say their internal controls if they don't publish them, or how much redaction would erode the purpose in seeking whatever it is one would seek. Ask me a year from now and I'd have more in depth answers.

Not so ha-ha funny to see a FOIA production about 80% redacted. Try IRS home page after exhausting open source options.

Tell you what. Send me a PM on which one then let me see what I dig up if you want... when I have the time.

You guys are awesome - I am in some information gathering phases to understand what agendas may be at play for different organizations depending on their donors.  That isn't to imply that they're influenced as much as I wonder how transparent they are about their sponsors to their smaller (individual) donors.  Granted, I have people I care for and esteem at a number of FA non profits so I'm not going to stir up trouble as much as get a handle on some big issues troubling me (sesame of course but also the cost of epinephrine in the United States).  I am aware that the peanut board donates money to FA non-profits, for example, but I don't know how much.  Same goes for the pharmaceutical companies.  For the Allergy Law Project right now we're working on a post about the Gleason/United decision and that's another one that is frustrating because it is obviously an area that needs a change in the law but I want to see how best to approach any options.  In my "spare" time of course.   

Random aside, I'm hearing about families in stock epi states not sending their kids to school with epis because they're relying on the school stash.  Anyone else hearing that? 

Oh, and that FOIA blog is awesome.  Bookmarked!

[SilverLining]

I'm not sure what to think about this being named after me.

Sounds like a compliment to me.

I learned today the daycare at the gym has stock epi (jr and sr) on hand.  I usually just hand the med bag over to the girl at the counter (they are aware of the kids allergies).

Turns out they are epi trained, CPR trained and basic medical emergency trained.

Why do I feel better about the gym daycare than the school?  (Nurse excluded on training but no stock meds).

I thought gym's required first aid treatment because of the risks of injury and heart attack. When my kids first started school the only teachers with first aid treatment was the gym teacher. (We have no nurses in school.)

[Macabre]

Hsw24 we are in a stock Epi state and this year after spending $120 for the epis for the nurse office at our high school, the nurse said that she keeps several new epis there--basically said there is no need. Next year I may not by extra for the nurse's office and may just make sure the ones he keeps in his locker (for an extra set to have on weekends and nights) srew current enough and not yellow. 

[YouKnowWho]

We are in an optional stock epi state.  Our county refuses to pay to stock them or seek out how to do it.

[ninjaroll]

Same goes for the pharmaceutical companies. 

Based on what you're doing and stated goals it would not be a bad idea to consider a primer from CMdeux on the way the industry works, more so because you're also heavily pursuing the FDA as a consumer advocate rather than related business or academic insider. Many of those industry ties are nearly indistinguishable from academic ties. Knowing that ecosystem might help avoid invalid conclusions of influence while potentially enhancing the ability to detect more nuanced patterns.

[ninjaroll]

Upon further thought (and waiting for a NYC office to call back) the second part of a solid knowledge building 1-2 combo is Macabre for an overview of the world of nonprofit donations with regard to individual members and corporate or institutional giving including donation forms such as stocks or physical goods or services.

[hsw24]

"Knowing that ecosystem might help avoid invalid conclusions of influence while potentially enhancing the ability to detect more nuanced patterns."

That is exactly what I am aiming for, ninjaroll - thank you! 

I know from my line of work that bias doesn't instantly follow compensation - if it were the case I wouldn't be able to advise clients of the merits of their case in a level headed way.  Still, I do wonder about non-disclosure of funding ties and what that awareness might bring in terms of small-time donors.