Food Donations

[jgivens]

I sometimes do volunteer work in a food pantry giving out food to folks on limited incomes. I am appalled at the processed food (junk, is more like it) that we give out. Last week, I met a woman there who was diabetic and gluten intolerant. She had to choose from the least bad of a bunch of terrible things for her.
This morning I was chatting with the pharmacy tech who handles my mother's meds and found out that a new pharmacy has opened up and she has had a hand in ordering some of the things they are going to sell. She has ordered a bunch of gluten-free items and when I told her about my experience in the food pantry, she was appalled. She quickly got online and ordered a case of gluten-free soup to give to the pantry.
I got to thinking that there are many of us who have tried various G-F things and have found an ingredient that we can't have. If it is unopened, it might be nice to consider giving it to a food pantry in your community because there are many, many people like us who cannot afford the food we need to eat to get well. I have often wondered what it would be like to be homeless, on the street and looking for a bathroom all the time. Most of the time, homeless folks do not live long enough for us to even know that they have MC. It is an equal opportunity disease and not everyone has the money to deal with it.
I have talked in the past with the director of the food pantry and though, she understands the problem, she is overwhelmed with the need to fill empty stomachs. There is also the theory of: "These homeless people need the calories from glucose and gluten to keep going". AAARRRGGGHHH!
What we need it more education about how to feed people and what to feed them. Okay, off my soapbox. Sorry if I have bored or in any way irritated anyone.

[tex]

Jane,

Your post fits right in with an idea that has been in the back of my mind for years, and it keeps whispering in my ear that I/we need to do something to get this set up, rather than continuing to postpone it. My original idea was to set up a not-for-profit organization to increase public awareness of microscopic colitis, and to help people who have the disease, and who cannot afford the tests they need, and/or who don't know how to properly treat it. I envision an arrangement with EntroLab whereby we might be able to work out a discounted rate, and then further reduce the cost by donated funds, possibly on a case-by-case basis.

But since (IMO, at least) MC, celiac disease, and non-celiac gluten sensitivity are just variations of the same disease (gluten sensitivity), I see no reason why we couldn't expand our mission statement to include dietary help and food donations for anyone who has food sensitivities and finds themselves unable to pay for their special food needs, (once we're able to establish the necessary resources, of course).

When I bought the old microscopiccolitis.org doman, one of my reasons for buying it was the thought of setting up a not-for-profit organization to be associated with it. The main reason why I haven't actually set up a not-for-profit organization is because I can't do it alone — before anything can be done, a board of directors has to be assembled, and a certificate of incorporation has to be created and approved. And because I'm gettin' to be too old (with too many health issues) to be flying all over the country promoting the organization, requesting donations, attending board meetings, etc. I need some help, by qualified and motivated people. None of the suggestions I've made here are chiseled in stone, of course. The board of directors would decide all the details. So I'll pose this question:

Does anyone feel that we might be able to muster the energy and the expertise and the motivation necessary to actually accomplish such a goal. I'm talking about creating the equivalent of The Crohn's and Colitis Foundation, for example, except that our focus would be on MC and food sensitivities, and rather than to just collect huge sums of donated money and then spend it on administration and misguided medical research, we would target much of our assistance to deserving individuals who can't afford the tests and the care they need. My thoughts are that while MC itself might be a tough sell for raising donations (since everyone seems to think that it's simply a benign, nuisance disease), by including the issue of food sensitivities, we would be promoting an issue that virtually everyone in the general population would recognize as a worthy cause.

Any thoughts?

Tex

[jgivens]

Wow! This is a better response than I ever dreamed of. Of course, I have not had long to "dream" about it, as I am new (thank God--I haven't had to deal with it until now) to the illness and new to the problems that I see other people struggling to cope with.
I think that you are correct Tex, because gluten insensitivity seems to be a "fad" right now, including food sensitivities in the Foundation is the smart way to go. In every problem/issue that has given me no end of headache in my life, I have come (in my old age--I will be 60! at the end of the year) to understand, that if I don't pay attention and ask myself what good can come from my experience, it remains just a bad experience. However, if i were to take my present circumstance and see that indeed, there is a reason that I seem to have been hit over the head, I can make this an opportunity to help some people instead of becoming an embittered old woman who is mad at her intestinal system and the world for the rest of my life.
You are also right about it not being something that only one or two people can envision and carry out. You do have some really good concepts--especially involving Enterolab in the mix. I eagerly look forward to what others have to say about this.

[Martha]

I have no experience with foundations, or that sort of thing, but it sounds like an excellent idea. The fact that so many insurance policies don't cover EnteroLab testing is a hindrance to a lot of people being able to get a good handle on what diet changes they might need to make, so someone helping out with those expenses would be a shot in the arm (figuratively speaking!) to some of our fellow sufferers.

In the meantime, Jane's suggestion of individually donating gluten-free items to food pantries is something that we could all do.

[Rosie]

Tex, you have some wonderful ideas! Since no one else is going to help us, then we need to do more to help ourselves. The awareness of food sensitivities is reaching "critical mass" with the general public and now is the time, if we are going to do it at all!

It has occurred to me in the past that there are lots of people who don't either have the resources to deal with food sensitivities. I was thinking primarily about our local food pantry, and the "Meals on Wheels" for seniors, and of course the homeless are yet another category. The web site for "Meals on Wheels" here in Eugene specifically states that they can't accommodate special food requirements..... it's a one size fits all, primarily because of the lack of resources, both money and people, to do anything other than the easiest and cheapest.

But doing things at the local level would be further down the road, as the first thing to do is establish a foundation, a web presence, general awareness, raise money, and then decide the best ways to spend that money, as you point out.

I am very interested in getting involved with this. Fund raising is the most challenging part....... too bad we don't have a "celebrity" member to be a spokesperson! And the competition for charitable contributions is fierce! But we won't know if we don't try!

Rosie

[Deb]

This is an awesome idea, Tex. I've lately been wondering about our local women's shelter and, as I'm in a medical community, the local transplant houses and their needs for some gluten free products. They're always looking for food donations. I'm not great at fundraising but am willing to help if you can use me. Deb

[Gloria]

I've given GF food that I could no longer eat to our local food pantry. They said they would have no problem giving away the items. As I read this thread, I realized that I could buy something every week and donate it to the pantry. If we all did that, it would be a good start.

I don't know about creating a large not-for-profit organization. It's a great idea, but does sound like it would require some expertise and continuous effort to keep it going. Maybe there are enough people here who are familiar with non-profits and how to start one. Assistance for Enterolab testing is surely needed.

Gloria

[ant]

Dear Tex,

As you indicated it is a full time commitment to run a non-profit, requiring financial and legal professionals, a Board of Directors, transparent accounting and general good governance.

If a Foundation for the relief of people suffering from Microscopic Colitis and food sensitivities was set up I would be very happy to try and help on an ad hoc basis (e.g. at various times - including at the start up phase - to do things that help raise a little money). However, as I am the only member in Hong Kong I may be talking to myself in this neck of the woods, at least to start with


Best wishes, Ant

[Christine.]

Dear Tex
This sounds like a wonderful idea. I don't know how you develop a multi-state and even multi-national non-profit but if you or someone else can identify what is needed i will be happy to do whatever i can to help. I have set up not-for- profit corporations in the past but have no experience in charitable foundations....I believe there are many of us that would do what needs to be done. It is time mc comes out of the shadows.
Christine

[gluten]

Hi, I have been a leader of a gluten intolerance group for ten years and get requests from g-f individuals looking for g-f foods. Some where families and could not afford the extra cost fo the g-f foods. They told me they tried the local food pantry's and they did not have a g-f products. I called some of the local health food stores and one gives away all there g-f foods on Monday and they just gave away several shopping carts of product. I called trader Joes and asked them the same question and meant to call Whole Foods. If everybody in there area could call the local stores they could asked what they do with the g-f product that are close to the expiration date. Also, if there are any g-f baker's or food manufacturers that may have g-f products that are not perfect to sell retail. In the Boston area many food pantry's have g-f products and it is expanding. I have talked to the woman who gets the product and supplies the pantry's. I will be working with her to get product and supply the food pantry's in N.H. If anybody needs help send me an e-mail. Tex, your idea for an MC foundation is way overdue. Today, with the help of "Skype" a foundation could be set-up without traveling around the country. Meetings could be held by computer and that would allow people from around the world to help. Last fall I was planning a g-f dinner conference with several speakers and could have send the meeting to any group that could have planned a meeting at the same time. Jon

[MaggieRedwings]

Tex,

I would be happy to help on whatever level I could. Used to work with a large fund-raising consulting firm that did huge accounts that raised well over 100,000 million dollars.

(2) well known celebrities and who give of their time and are strictly GF because they need to be are - Zooey Deschanel and Chelsey Clinton - and might be a starting point for someone to sit on a Board. Big names with great reputations.

I have been giving GF to local foodbank for a number of years since ours cannot accomate special requests and they now have a few families that they give my GF donations to and tell them it is from someone who understands their conditions.

It is a lot a work to do this and since you and I are getting ahead in years - might be a bit too much.

Willing to do what is needed.

Love, Maggie

[jgivens]

I just perused the Internet---not only Chelsea Clinton, but Bill Clinton! Wouldn't that be something if we got his name on the Foundation? There are many celebrities who are gluten-free for matters of wt control. We may be known as the Potty People, but we are also apparently really cool and "cutting edge" faddish which could be good or bad.
I am encouraged by the response to Tex's ideas and hope we can organize something.

[tex]

Meetings could be held by computer and that would allow people from around the world to help.

While that's true for all but one annual meeting, my understanding of the laws regulating entities of this type, are that at least an initial and one annual board meeting must be in person, where everyone is gathered in one room. I could be misinterpreting the law, though, so this would need to be verified. And if we are going to grow this into an effective national and international organization, then the board will probably stay pretty busy for at least the first few years, so monthly meetings would probably be essential.

Having spent several decades attending monthly board meetings for both a for-profit business (a farming co-op) and a non-profit government-affiliated board (Natural Resources Conservation Service, of the USDA), I've formed some definite opinions about board meetings. While meetings are sometimes/often inconvenient to attend, due to time demands or other considerations, I have trouble warming up to video conferencing. It's probably better than nothing, but it's a poor substitute for a face-to-face meeting, IMO. And surprisingly often, items/issues come up during discussions that may not appear to meet the arbitrary standards for political-correctness of certain other organizations or individuals, but the issues have to be dealt with, and a board typically would not want to be broadcasting such discussions around the globe, by using a transparent medium such as the internet. The board's decisions are a matter of public record, but that doesn't mean that every minor detail leading up to those decisions should be recorded for all the world to view.

That said, yes, video conferencing could probably be used for many/most of the meetings, depending on the agenda.

Tex

[tex]

Hi All,

Yes, the responses are inspiring, better than I expected. Using celebrities to promote issues is certainly not a new idea, but it always seems to work, so I have to agree that's a great suggestion. It's a simple trick that usually provides virtually instant credibility (and economical, provided that the celebrities are willing to donate the association of their name with the promotion).

We apparently have a number of members who have valuable experience that could be very helpful with this sort of project.

Tex

[ant]

Dear All,

Just wanted to put in a word that, IMHO, from the "get-go" this would need to be positioned as beyond gluten sensitivity. It seems to be one of the learnings on this board is that the world is not very aware of multiple food sensitivities.

As an example many people with dx MC or unrecognized MC (aka IBS) could be given GF "bread" (with say butter or margarine) and it would still make them ill.

Best wishes, Ant