Welcome !
G-PACT – Gastroparesis Patient Association for Cures and Treatments – We now have a online presence to share our newsletter. We welcome suggestions on newsletter content, site improvements and value your input to make this a bold positive statement online.
G-PACT.org.
thepactblog 
I would like to subscribe to the newsletter, but I would also like to know where the donation money is going to. I am looking into a donation site for gastroparesis, what do you do with donations? How are you helping our community?
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We use donations to operate G-PACT and it’s programs. While we are all volunteers, and we work from our homes, we do have operating expenses. We provide, free of charge, Restaurant Cards, Venue Cards, Restroom Access Cards and pamphlets for gastroparesis and chronic intestinal pseudo-obstruction. We are members of the DDNC and a few of us lobby each year on Capitol Hill for funding for research. Our Patient Assistance Liaison Program provides a toll-free number where patients can call and speak with a volunteer about their disease. We offer the Send – A -Smile program which cheers up those facing difficult challenges, and a Grief Program to send condolences to the family of those who have died. We also pay charges to maintain our website and domain names. We have postage expenses for the items we mail. In addition, we produced the first PSA for gastroparesis and do periodic webinars. For anyone wanting to donate directly to research, we can provide the information on three programs that are currently researching gastroparesis.
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I have a few concerns about these operating expenses. Yes you did provide the cards free of charge, however we all had to send you a SASE to get them sent out. We paid for the shipping on those. As far as the charges for the site and domain name, there are sights that provide this of no charge. Perhaps moving to one of them might cut back costs. The only way that we are going to find a cure or new treatments is through research. Have you been referring people to that the whole time? I was under the impression that who ever did donate to you, a part of the funds went directly to this. Sorry if it is just me, but I do not feel comfortable donating money to your group. To many things seem, well, just off.
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We’re sorry you feel that way about donating to us. We have provided information on donating directly to research for a few years. And even though you paid for the postage on the cards, we do pay for printing them. In addition, the free website sites do not have the level of security that we need to do the PFDD initiative that we are working on with the FDA. So moving to a free site is not an option.
When you look at how much we do for such a small budget, we accomplish a lot. Most non-profits have staffs and overhead and you are lucky if 50 cents of every dollar donated actually goes to programs that benefit patients. Our contributions are not a lot, but we make every dollar count as we are all volunteers and we all provide our own computer, printer, etc. In addition, we are Gold rated on Guidestar, which means we are committed to transparency and have provided them with our financial information.
If you are more comfortable donating directly to research programs, we would be happy to share that information with you. Just email us at contact@g-pact.org.
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I think a lot about the use of funds in non-profits. I have given my time and energy to a few of them now, and money to others. One thing I have learned is that non-profits that give the overwhelming majority of their donations to research have a net smaller impact on the population they aim to help.
Take March of Dimes, or Susan G Komen. The reason we all know these non-profits is because they invest money in their infrastructure which allows them to grow and in growing have more influence and in so doing attract greater donations and celebrity assistance.
The org that gets $5000 in donations annually and gives $4500 to research has done a good thing and made a difference.
The org that gets $5000 in donations annually that puts that into advertising, awareness, overhead and growth, can turn $5000 into $50,000. If half of that gets donated to research they have done an even better thing and made a bigger difference.
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