WHAT ARE MY DONATIONS USED FOR AND DOES MY DONATION HELP SUPPORT YOUR WORK?
Yes! Absolutely! Every penny we receive is earmarked towards one of our current or upcoming projects. We have no paid staff at this time, so we can use our donations to support the following programs:
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We do nearly all our social media, website upkeep, awareness campaigns, etc. with volunteer talent and elbow grease. We occasionally contract some projects, like the actual website creation, to small business contractors who we have come to count on like Nighthawk Studios.
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Cost of hosting our website, including associated services such as email, updating, and domain services.
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We are in the process of designing our fundraising merchandising store which will launch very soon.
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We always seek out talent from the Arachnoiditis Volunteer Registry before deciding to pay to contract the work we ourselves cannot do due to our own Arachnoiditis and related healthcare issues.
We work in collaboration with many other Rare Disease organizations who provide us exceptional support and educational opportunities. Nearly all are free, but now and then we pay to access priority resources.
Research and Registry Development. This is one of our three primary objectives of our current work. Our first survey through Stuffthatworks is free and is already providing excellent starting information on which to inform our Registry Development efforts. We will be offering presentations of these results throughout July and August, so watch for dates!
Now that we are ready to begin the Registry Development process, we need to look towards to the long-term funding of this most important objective.
We thank you for your new and continued support.
We are still accepting Donations to our Dr Terri Lewis PhD Memorial Fund. As most of you know, Dr Lewis was one of our Founding members and our VP Research before she passed unexpectedly. We have earmarked all funds that come through her Memorial Fund towards a yearly award. We are considering such awards as Young Investigator grants or a yearly Scholarship. This decision will be made and announced by year end. We hope you will consider a small donation.