KFA/AAFA - Parent advocacy / schools / changing laws

[LinksEtc]

Tweeted by @nonutsmomsgroup



"Parents ARE the Change Makers"
http://www.gratefulfoodie.com/protecting-students-with-food-allergies/

FREE Webinar:  How Parents Can Change Laws to Protect Students with Food Allergies presented by Kids With Food Allergies (KFA) – Division of the Asthma and Allergy Foundation of America (AAFA)

I am honored and excited to share that I will join Charlotte Collins, JD and Vice President of Policy and Programs for AAFA and Larrissa Kaczaniuk, Advocacy and Outreach Manager for AAFA as we explore the possibilities for 2015

https://www4.gotomeeting.com/register/737125367

[ajasfolks2]

Just adding details as to that webinar / meeting announcement:

How Parents Can Change Laws to Protect Students with Food Allergies

Tuesday, October 21, 2014 1:00 PM - 2:00 PM EDT

Want to attend if can possibly squeeze into schedule!!!

Anyone else?

PM me if you'd rather!!

[daisy madness]

I will not be able to attend live.  Will a recording be available at a later date?

[devnull]

Whoever attends I have a small request. Can you post here who the named sponsor is?

[ajasfolks2]

I believe I read that the named sponsor is Mylan.

Am going to see if I can find that again.

[ajasfolks2]

From the info on the "Go To Meeting" link in opening post:

This webinar is made possible through a sponsorship by Mylan Specialty.

[devnull]

I'm going to make a prediction, one I hope proves very wrong.

I predict that the bulk of what they term advocacy will be code for increasing stock epinephrine and how you can organize to help strengthen or increase stock epinephrine combined with some light mention of avoidance or other tiptoe around actually calling out food use as a barrier.

Increased call for stock epinephrine will be aimed at mommy bloggers, the marketing tool of the moment, who often receive institutional support such as sponsored trips. http://mashable.com/2012/05/08/mommy-blogger-infographic/

The mommy blog advocacy for increasing stock epinephrine and reviews of novel "free of" foods or other complementary lifestyle products in conjunction with the attention from institutional support from private industry will be high profile and remain highly visible as the highest form of acceptable advocacy. Any criticism of this model will be met with group disapproval because this is accomplishing something that saves kids. Every use of an EpiPen is heroic in the news where prevention through strict avoidance will never be mentioned, nor the use of food questioned.

Actual allergen management through removal of a specific allergen or removing the unnecessary use of food will be either downplayed or deemed ineffective through vague mentions of studies on contact reactions that overgeneralized beyond study parameters on an entire population. Parental anxiety and quality of life may be mentioned as a problem in a manner that suggest causality rather than result.

[CMdeux]

I suspect that you're right. 

[ajasfolks2]

Does a Webinar have a shut up mute button to be used on those participants who won't stop asking questions about PREVENTION and RISK MITIGATION rather than about allergic reaction response (AKA epi injection and 911-medical prof response)?

[devnull]

Most webinars are automatically muted but for scheduled speakers. Citrix has a hand raise function that allows you to signal you have a question that you type through your pane. A moderator usually filters the questions. All assuming they're using Citrix GoToWebinar, of course. A smart and tactful way to pose a question likely to be presented to the group and answered is to know the presenter's previous work and ask a question based on established work or statements. The other way is to wait until the end when a presenter volunteers his or her contact information to send related follow up questions. Sometimes the presentation isn't as key as being able to contact later with related questions not covered during the group time.

I should add: I would think it's absolutely fair and true to position yourself as a leader of an advocacy community yourself, whose membership spans a wide variety of professionals. Your leadership in advocacy focuses on an oft overlooked portion of anaphylaxis management based solidly on ADA where barriers to access are addressed as they present. With this disability allergen use is often the barrier in need of accommodation. You represent a community that is listed as a resource on Wrightslaw. That perspective, which is accurate, puts you as a fellow leader in advocacy in the company of other leaders who is deserved of dialogue and exchange.

[ajasfolks2]

 

[ajasfolks2]

. . . at 15 minutes in, focus seems to be stock epi in schools . . .

will report back as I can . . .

(there will be link in a few days for the webinar)

[ajasfolks2]

Unveiling AAFA's "Action Center" . . .

aafa.org/engage

There will be clickable ways to send messages (to legislator) and assist in advocacy THROUGH that web page . . .

[ajasfolks2]

Lost connectivity with Caroline Moassessi (Nevada) so we may not get to hear her.  Darn.  Really wanted to hear her presentation!

[ajasfolks2]

Caroline on via phone . . . outlined COMMUNICATION and key features of that.

COALITION formed to get things done.