Just putting this here for related reading:

http://en.wikipedia.org/wiki/United_States_non-profit_laws

Event from last fall that was supposedly held.

http://mclean.patch.com/events/food-allergy-ball

Quote
With a portion of the proceeds benefiting Dr. Robert Wood's Food Allergy Research at the Johns Hopkins Children's Center

Keynote Speaker
Dr. Robert Wood

More older events.  Seems to favor golf. 

http://ashburn.patch.com/users/jon-gonzalez-a7d93ce0

https://www.facebook.com/dccharity

Putting note here until can find more:  Angie

Boo, thanks for that. 

So, along those lines:

http://abington.patch.com/blog_posts/food-allergies-the-test-results-are-positive-da7f1703

Quote from: ajasfolks2 on March 18, 2013, 09:16:23 PM
Perhaps the other "co-founder" is the "other" Gonzalez?  I think that's what boo was wondering in earlier post?

I hope that really *was* a coincidence! If not, that crosses an ethical line that's hard to defend.

However, the co-founder of this organization is Joyce Ahrens, a mom of an FA daughter and an OT:

http://foodallergyfoundation.org/education/from_a_moms_view

Perhaps the other "co-founder" is the "other" Gonzalez?  I think that's what boo was wondering in earlier post?

The lack of open details and clarity is very unsettling. 

Wow. This story gets weirder and weirder! Okay so if he is a "co-founder", who is the other "co-founder"? I note the other new national food allergy non-profits list their staff or board of directors or organizers more openly. I always wonder when I can't figure out WHO an organization or company is...

For some reason, I have a trust problem when I don't know (I mean, be able to identify really) at least who I am dealing with, even if I'm just reading info they put online.

Interim employment info for him from linkedin:

Quote
Director of Ambassador Relations
RdV Vineyards

September 2012 – March 2013 (7 months) Delaplane, VA

RdV Vineyards is a private boutique winery located in Delaplane, VA. We are a fairly new winery – we are currently selling our second vintage – and we are going against the traditional methods of producing and selling wine in Virginia. We are not open to the public and produce roughly 2,000 cases of wine each year.

We produce two Bordeaux-blend wines: Lost Mountain and Rendezvous. Lost Mountain and Rendezvous have been praised for their elegance and finesse, as well as their power and structure. We have been fortunate to have several critics visit us, including Master of Wine Jancis Robinson.

What is an RdV Ambassador? RdV Ambassadors are artists, actors, athletes, investors, politicians, restaurateurs, lawyers, journalists, CEOs and marines. They come from all walks of life and all around the country. They are all renegades who take the lead in their own lives and who enjoy exploring and discovering life's fines pursuits. Together, they make up an exclusive community of people who believe in reconnecting with the land to produce a wine unlike any before it.

Brand new employment info for him via linkedin:

Quote

Vice President, Interactive Product Development

Gannett Healthcare Group

Public Company; 51-200 employees; GCI; Publishing industry

March 2013 – Present (1 month) Washington D.C. Metro Area

Gannett Healthcare Group (publisher of Nurse.com, Nursing Spectrum, NurseWeek, Today in PT, and Today in OT) is a nursing and healthcare communications company and the largest print and electronic publisher of news and information for registered nurses. Our mission is to enrich the professional lives of nurses and other healthcare professionals and to celebrate their unique contributions to society. Our core products include Nurse.com plus ten regional nursing magazines, an array of award-winning continuing education offerings and more than a dozen annual professional development and nursing specialty guides. Additional products and services include career fairs, web sites and consulting services. Gannett Healthcare Group is headquartered in Hoffman Estates, IL and is a division of Gannett Co., Inc. (NYSE: GCI). Gannett is a leading international news and information company that publishes daily newspapers in the United States and the UK, including USA TODAY. The company also owns nearly 1,000 non-daily publications, 23 television stations and hundreds of leading web sites including USATODAY.com, one of the most popular news sites on the Web.

PS -- boo, thanks!

There is limited info on him in page 1 of this thread.   It is all rather odd smelling to me too.

He's hitting Twitter pretty hard -- or at least seemed he was last week anyway.

Lots of begging-for-bucks & promo of the "runs"?

Well, I've been looking for just.the.right.song to post in this thread.

Not the best, but a good start:

Young Rascals - How Can I Be Sure (1967)

Mac has summarized pretty much what I thought when I dug around originally on their website.


This is just so incredibly fishy, because it looks like a nonprofit was created to benefit one family. 

Yes.  Though it also appears that this has been obscured somewhat-- as though the foundation is HIDING this somehow.

That's what feels wrong to me about this.  I don't have a problem with local fundraisers for kids who have medical problems that are crushing their family's ability to do anything about them.  I've been involved in some of those change-drives and rummage sale efforts to get organ transplants, surgeries, pay medical bills, etc.  But that is an HONEST and above-board benefit for a single child. 

This just feels... weird.
  It's like it is the one thing, pretending to be the other.  Or something.  And where is the other 50% of the funds going? 

Quote from: lakeswimr on March 09, 2013, 08:16:16 AM
And again, wouldn't they be better off working with FARE to get the laws changed in their state so that insurance would have to cover the formula or working even with current laws and their allergist to get the formula covered?  This must have cost start up money to do.  I would think that money would have been better spent to get formula coverage.  (which is a huge, important issue.)  OK, that's assuming the story is true.

The family of this child is saying Nutricia made a change to the formula to which they are not admitting. The child suddenly was unable to tolerate the formula after a label-only change (according to the company). The family is trying to buy up old formula made before the supposed change. They are apparently not insured for the formula, but this goes beyond insurance because they need it all right now.

I really don't know what to think about all of this. The mother says there are 15? other families who are also affected by this. However...we all know from experience that families can be totally convinced of something because of the internet that is also totally wrong. There's a kind of mass hysteria that can happen with all this.

It's possible this little boy had a coincidental change in his condition right at the time the labeling changed. It's possible (I suppose, although I don't see how) that the formula changed and the company either doesn't know it or doesn't want to admit to it. I think that's REALLY unlikely...but then, I tend to support authority. These situations always seems to be a touchstone for whether you support authority or believe The Man is out to get you. It's just easier for some people to believe in a big cover-up conspiracy from this company that's killing kids in order to save money.

I'm really sorry for the family and I believe their child has a real medical issue, but I guess I just don't believe in the connection between the formula change and their son's condition. I also keep hoping this mother will record in her blog what actually happened at the Mayo Clinic. They were apparently trialing the new formula there under controlled conditions, so what was the outcome? If the child is able to actually tolerate the supposedly-new formula, what does that mean with regard to all the previous donations?

I guess I'm just a heartless be-yatch because I don't buy it all. But then...I don't give money to those late night commercials for sad puppies either.

And again, wouldn't they be better off working with FARE to get the laws changed in their state so that insurance would have to cover the formula or working even with current laws and their allergist to get the formula covered?  This must have cost start up money to do.  I would think that money would have been better spent to get formula coverage.  (which is a huge, important issue.)  OK, that's assuming the story is true.

So I was this evening--before coming back to read this--I was thinking about this. 

Very often when I do a solicitation I tell the story of one person, one client.  I may use a photo (typically a stock photo). I may change a few details. I change the name.  And I'll carry that through in an e-appeal and also web page elements. 

I will say, "Your gift now will help Alex have a bright future."

So I was wondering if they were doing that--but using a real family.

And sometimes, I'll say, "Your gift of $25 will do X." Or "Your gift of $50 will do Y."

Like when you get a solicitation from Habitat for Humanity and it says $10 will buy a box of nails to build the Jones' house."

Well, you know that if you send in $10 they're not heading to Home Depot to buy one box of nails for the Jones' house. It's a tool--and hopefully an honest one, though not one to be taken literally. 

I was wondering if this org was making a (very weak) attempt at that kind of convention. It's obvious they are not good at fund raising, so maybe they just messed this up, too.

But wow--it certainly does look like one family is receiving funds directly.

Hmmmmmm.

You know, when a donor gives to a university--say gives the university a $25K gift to start an endowment fund for a College of Engineering (since it's so top of mind these days) or money to a scholarship fund. That donor cannot specify a student to receive the funds.

This is just so incredibly fishy, because it looks like a nonprofit was created to benefit one family. 

I would  have to do some research to determine exactly what rule is being violated here, but something smells like a rotten fishy.