I think the Papkees need our help!

Posted on: Mon, 05/22/2000 - 11:36pm
schierman's picture
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Joined: 06/30/1999 - 09:00

I've been in contact with Chris for the past few days and he seems like he could really use our financial support. Not only is he running this website - that we all use for the discussion boards, but he is also active in many causes and helps to organize us into action on many different projects. If it was not for this website, I would not have felt empowered to do some of the things I have done locally to promote PA awareness.

We just bought a house and money is tight for us, but I'm going to send in $50 now, and more later when I can afford to. Think how much it could help the Papkees if everyone who visits this site were to just send in $20 or $50 this week!

There's no better organization to donate to than the one that helps our children's affliction!

Posted on: Tue, 05/23/2000 - 12:28am
Diane's picture
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Joined: 12/15/1999 - 09:00

i agree wholeheartedly schierman! also in regards to food allergy awareness week, this is a good time. alittle late but *better late than never*.
let's all pull together this week and see the difference we can make with some financial help;-)just like the difference this website has made in our lives.

Posted on: Tue, 05/23/2000 - 12:36am
michelle's picture
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Joined: 01/25/1999 - 09:00

What about a fund raiser for PeanutAllergy.com that might also up awarness? I would be willing to help in anyway to start something like this. We also hope to donate some money this summer.

Posted on: Tue, 05/23/2000 - 1:52am
andy's picture
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Joined: 04/26/2001 - 09:00

I recently sent $75.00 and I will send more money this week. I agree with a fund raiser. I would be happy to help work on this. I also have often wondered about the company that manufactures epi pens sponsoring this site. It seems like such a natural thing. I have got to believe if their CEO spent time exploring this site, they would jump at the chance to do it. Chris, have you explored this? Andy
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Posted on: Wed, 05/24/2000 - 7:00am
Chris PeanutAllergy Com's picture
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Joined: 04/25/2001 - 09:00

Hi Andy and everyone,
>>The problem arises that we need the money NOW to be able to work on some very important issues and projects which we are now heavily involved in and which cannot wait. I want you to understand this is an urgent need and that your help is needed THIS WEEK!!! Please send an e mail with the amount of support we can rely on to [email]Chris@PeanutAllergy.Com[/email]
>>>
Don't let something as important as what we have going for us now in regards to labeling go by. We receive hundreds of e mails and calls from those with peanut allergy who want better labeling in the U.S.. Do not let us miss out on this great opportunity, one which we have not had before and will probably not see again for years. All of you who asked what you could do to change the labeling to address our allergy, here is your chance to make a difference. I don't want to hear from you a year from now and have you say you should have sent some money in order to allow us to work on this better. Now is the time! For those who have been active, want to become active or are following the labeling issue such as the press, more will be posted on the PeanutAllergy.Com "Labeling" Discussion board as this issue unfolds over the next few months.
________
Yes, We have been in contact with representatives of Epi-Pen ever since we first started years ago. We often contact them to see if they can help on certain issues or to see if they have information we are looking for etc.. We also ask them questions that come up about their product.
They use our discussion boards also. You will find posts from Alan S. Pernick (you will see his relationship to Epi-Pen on his post) on our original message board, (we no longer actively use this board, but it is archived so we all can access the information on it, you can get to the archived boards from the link at the top of our current boards).
Here is a link to one of Alan's posts on the original PeanutAllergy.Com board. [url="http://www.freebucks.com/bbs/messages/763.html"]http://www.freebucks.com/bbs/messages/763.html[/url]
They appear to be interested in helping with financial support but there is a lot of legal work that needs to be done on both ends before they would. This will take thousands of dollars to do on our end (I have met with lawyers and had meeting on this etc.), money which we currently do not have available. This is one of the hundreds of reasons why we recently started asking for people to pledge with a yearly amount which we can rely on so we will know how much we will have available for us to work with.
I started calling people in our community on the phone about two weeks ago to see what the response would be to pledging financial support to PeanutAllergy.Com and what needs to be done, and I have to say I am more than satisfied with the results. I have always thought that if I could explain all we do, why we need to be here to do it, what needs to be done etc. that everyone would understand and help us to create this communications center and organization. We as a community do need an action based organization fighting for us. There are many educational non-profit organizations but they are not set up to do what we need done. Many with peanut allergy do not understand allergy do not realize what we are up against as people with peanut allergy, and when I informed the ones I recently called who were not aware, they were ready and willing to give their financial support for the effort we are undertaking (we taped some of the conversations, with the permission of those we called, to help put the information together, we will be taking what was learned in the conversations and putting it in text so we can add it to the site and send it out to everyone on the e mail list. Again this will take time and will not be done in time for the current financial crisis) I have known since the beginning we needed to create a way for people world wide with peanut allergy to find each other and work together as a group, to be a tool so we as a group can create a large powerful organization (such as our opposition has which is constantly working to be sure their crop sales increase and not decrease for any reason) that will work for us and which will be paid for by us so to avoid the conflicts of interest which come up when an organization receives its major sponsorship from those it actually is at odds with when it works to create safer environments for those with peanut allergy.
So far 80% of the families I have called about pledging have pledged 100 dollars per year or more. Another 10% are seriously considering it and just wanted a few days to decide.
All it would take at this point to continue to do the work we do and to continue to grow is to be able to call about 1000 people on our list, if we could find another thousand people to actually pledge and send their financial support of $100 dollars (not just pledge but actually put it in the mail, because there is obviously a big difference between saying you are going to send it (which is great but actually doesn't do anything, and actually sitting down and writing the check and mailing it) Obviously if someone really cannot send a check at this time I understand that, and I say "really" because with all the personal sacrifices we, my family, have had to make to continue this effort, I don't like to hear when someone says they would like to send money or that they would like to send more but can't...
If someone has a computer and a paid web access account, goes to the movies, has at least one car (many of us have more than one), if you are able to go to restaurants etc. you probably could send $100 a year without truly upsetting your financial life) If you cannot afford to give $100 then that is one thing. We have many single moms who "really" are just getting by (no support from ex-husbands etc.). I have had many phone conversations with many of them who are in bad situations as the schools their children are attending are not doing what is needed, and they cannot afford to move to another area which would be safer for their child and they cannot take time off from work to deal with the school etc. Some have told me they have even lost jobs due to having to take time off to go to the hospital during their child's many reactions and/or because they had to take time off to deal with the situations which led to the reaction to try to avoid it happening again. This is often a school or daycare etc. which is not handling peanut allergy well.
I "really" understand that some are not able to give their financial support, but there is no excuse for most of us not to support this effort and to create a communications center and action based organization for our peanut allergy. We need a large, well funded organization to fight for us, to be able to move forward against those who work against us, so we can create a better life for those of us living with peanut allergy.
I am glad you are with us and hope that I can rely on your help and financial support. This is a large task we have in front of us and we will only be able to do it if we pull together and do it together.
Fundraisers are great and we hope many of you will work on putting one together in your area, but these things take time, time which we do not have the luxury to wait for at this time. They are also a lot of work to put together. We are working on putting together information to be able to show you how to put on a fundraiser, we do need and want to see these done. They are great to raise awareness in your area as well as raise money.
The problem arises that we need the money NOW to be able to work on some very important issues and projects which we are now heavily involved in and which cannot wait. I want you to understand this is an urgent need and that your help is needed this week!!! Send me an e mail with the amount of support we can rely on. Here is my e mail address [email]Chris@PeanutAllergy.Com[/email]. We will add you to the list of supporters. Please send your check without delay to the address at the bottom of this post.
Here is what we need to be able to work on THIS WEEK: If you want to see better labeling help us to address all the work which needs to be done to make this happen.
The address to mail your check to I will add to this bottom post. Please let your friends and family know to give their support also.
U.S. Labeling law changes which we have been working on and now must have the resources to be able to combat those many manufacturing organization which are going to oppose those changes which cost them money. (The petition to the FDA is written, it has taken months and hundreds of hours to put together, and now we must be ready to support it!!!) We need to be able to concentrate without worry about finances, while we put out the press releases and give interviews, make hundreds of phone calls and organizing the information about what is going on, who we are up against and what needs to be done, and working with those who are working with us to get it through. This takes a lot of time and work and I hope you can understand this and hope that you want to make a difference!
Send a check for as much as you can afford. I wish I had more time to explain this situation, how much we need to do, how much we have done on this and how important it is to those with food allergies that this FDA petition gets the attention it needs and deserves.
I hope you will contact anyone you know who will help, let them know we need their support, get them to tell us they are out there (there is a lot of power in numbers). Send your check, make some sacrifices if you have to, this is a big opportunity for our community. Many do not understand how bad the labeling is in the U.S. How under funded the enforcement is, and that there needs to be more specific and definite labeling to keep us safe. I hope you have an understanding of this, and that you will help explain to those who do not even realize there needs to be better labeling. I hear often from people who tell me" I just look for "peanut" on the label. They do not know that this is not all they need to look for. They did not know about other words to watch for which may alert them there is a possible hidden ingredient. They did not realize that all manufacturers are not aware of peanut allergy and many are not labeling for us. They may not realize there is no standard for the "may contain" label and each manufacturer can label it for different reasons such as one might label it for "same line" and another might put the same label on for "same manufacturing facility". Another might not feel they need to label even though there is a high probability of cross contamination. While there is not set rule to follow, we will still be forced to call all manufacturers to find out what they do at their company, at without a standard for all there will never be a way to know if one product just because it does not say "may contain" actually is safe or not.
MAILING ADDRESS:
(To send check to)
Make payable to PeanutAllergy or PeanutAllergy.Com
and send to
PeanutAllergy.Com
123 Grant Ave.
Medford, MA 02155
USA
as soon as possible.
PHONE NUMBER 1-781-395-9530
FAX NUMBER 1-603-388-5483
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Stay Safe,
[email]"Chris@PeanutAllergy.Com"[/email]

Posted on: Wed, 05/24/2000 - 10:00am
DMB's picture
DMB
Offline
Joined: 02/22/2001 - 09:00

I've written the check for $100 and I just got the address to send it to off of the message that Chris just wrote. It's going in the mail tomorrow. After reading this last post by Chris and spending 2 days on that OTHER website (about the "peanut ban") how can I not donate? Thanks for all you do Chris! Deanna

Posted on: Thu, 05/25/2000 - 3:15am
Diane's picture
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Joined: 12/15/1999 - 09:00

Hi Chris; you wrote "If someone has a computer and a paid web access account..."
For everyone's information, there are a lot of free internet service providers(isp). I use Lycos. Just go to a search engine and type in free internet service and you will be amazed of how many there are. Why pay when you could go on for free? Many of them have an advertising banner that you could move around to get out of your way. But not all of them have banners. Just thought I'd pass on the idea. I was using a paid service until I found this out.

Posted on: Sat, 05/27/2000 - 3:40am
Chris PeanutAllergy Com's picture
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Joined: 04/25/2001 - 09:00

Hi Diane,
I was making the point that most of us who use PeanutAllergy.Com can afford 100 dollars a year to support our cause. We receive e mails and phone calls from people who use the old excuse, I can't afford it, then in our conversations etc. you find out they have a new car, go to Disney on vacation, etc. which is great and I am glad they are able to do so. The problem I have is don't tell me you can't afford to send something to help us pay the bills to run this website (which takes about 15 to 20 hours a day, 7 days a week and we are getting busier quickly, which is great because this means we are finding more people and families with peanut allergy to work together) I know there is free web access (I actually have free Juno web access account which I use sometimes).
I am trying to motivate people to really make a difference and help us in this effort to create an action based group set up to work in our best interests.
More soon.
(thanks for letting others know they can get free web access, this will help them be able to send more to make a difference.)
------------------
Stay Safe,
[email]"Chris@PeanutAllergy.Com"[/email]

Posted on: Sat, 05/27/2000 - 5:10am
Shawn's picture
Offline
Joined: 09/07/1999 - 09:00

Hey, this is an interesting point about paid internet use v. free internet. Some of us couldn't switch because the freebies don't have a toll free or local access number, but for those that do here's a thought: If you could find a free internet server that meets your web useage needs, you'd save about $20.00 per month, which could be donated to Peanutallergy.com. THAT'S $240 A YEAR!
We're moving overseas this fall, so if anyone knows of a free european ISP, please let me know!
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