Rheumatoid Patient Foundation Needs Your Help
I was glad when it started raining today – it’s proper to rain when you cry.
The Digital Patients’ Bill of Rights
Things are happening fast. The E-Patient Connections conference was fantastic. The day before, I participated in the Digital Patients’ Bill of Rights meeting. I haven’t written about it yet, but you can read about it on Tiffany’s Lupus blog, Making Progress: The Digital Patient Bill of Rights. That was the first step in a critical process of developing a vital document for patients.
Today, Think Brownstone posted a blog about the E-Patient Connections conference which discussed my part in it. It’s good the reach is spreading beyond the ballroom! I’ve been waiting for the video to be produced, but you can still watch my talk on the original E-patient Connections Ustream (begin at minute 26).
Do not miss!
Also new today, my interview with Pharmaphorum, a part of their patient perspective project, makes a great reason to check out their site, if you haven’t done so yet.
A huge step for the RPF
E-Patient Connections was the first of three important trips this fall. Katie Beth and I are headed to the Mayo Clinic in Minnesota for a Social Media Summit in October. It has so much more potential than it sounds like. It’s much more than how to Tweet! In an upcoming post, I’ll share a portion of my contribution to the materials.
After that, is the ACR Scientific Meeting in Chicago in early November. I’ll be reporting on whatever earth shattering scientific breakthroughs there are, as press. But the Rheumatoid Patient Foundation will also be exhibiting for the first time.
Why cry?
Several reasons… but I guess the bottom line is that we need help. People keep asking when they can eventually help, but they don’t realize that we need it now. I’m obviously not good at marketing. It’s so important to me that no one “use” our community, that I haven’t even done much myself to mobilize it.
So, I sit here knowing we have the resources we need in our midst, but not knowing what to say. If everyone gave a few dollars, there would be more than enough.
When funding fell through for a project, I hoped we’d have enough to do it anyway. Then, the estimate came back much higher than expected. I’m not giving up but I spent the last 24 hours trying to figure out how to make this work. I’ve looked at our options. And I’ve decided to let you know about the need and see what happens.
We will need two things.
- Soon, we’ll need folks to carefully follow instructions to submit some short video clips. If you want to participate, please watch for instructions coming soon.
- Second, we need money to professionally produce the final product, a video to be presented at our exhibit at ACR. Anyone can donate to the cause using the RPF donate page.
Yes, you can donate even if you don’t have RA. Yes, the RPF is a 501(c)3 non-profit.
Humble donate button
There was a donate link on the RPF site but, my daughter who designed it is as subtle as I am, so it’s practically invisible. I don’t think anyone noticed it. Tonight I’m asking her to replace it with something tackier and more obvious.
Gaining strength and courage
Recently, someone wrote to me: “Hang in there. I take courage in your strength.” I won’t share the rest, but think about how we gain strength from each other.
It was like the time I took my webcam and turned it at the laptop. I laughed at lots of tiny webcam-laptop images on the screen. Our force is also reflected back on itself.
I’d rather privately raise the money, do the work, and then just present the video publicly. It’s hard for me to make the step toward learning to mobilize and publicize and organize. But it’s time. Just like taking that first dose of methotrexate.
Postblog: You may notice a recent post is missing. I took it down by the order of a certain magazine. I was not previously informed of any embargo, but in a spirit of cooperation, I complied.
More! Here’s a great video by Health Central showing the Patient Bill of Rights meeting. I’m in the corner so I don’t think you can see me, but it’s my voice at the end saying “We’re all patients…”
Several patients are featured in the video Finding Support in an E-patient World by Mark King.
Recommended reading
- ACR REF Rheum Research & Courage That Won’t Back Down
- Video: Thoughts from American College of Rheumatology (ACR) 2010
- American College of Rheumatology Annual Meeting 2010
Kelly— I will help in any way I can— I can send money- not much, but I can do that— I don’t have video? I am a teacher, I can educate? Think of things I can do– I can even do clerical if that is what is needed, you are not far from me, I have family near you—
Kim Byrne
Maybe we can do a local video clip party so we can all use the same camera?
Every dime counts as they say, so thank you.
Hi Kelly, I made a donation. I would like to contribute in some way. I know this is just trying to get off the ground, but what about fund raisers (5K’s, fun runs, walks, etc). The arthritis foundation does stuff like that all the time.
The Board of Directors has been working hard to get the website and the structure set up so that we can assist and sponsor such local events for awareness and fundraising for RA. If you would like to head up an event in your area, that would be fantastic. We’d love to hear your ideas.
Kelly, maybe you could get one of those widgets that have the bar graph thingy that has a goal of an amount of money, like some of the funding drives have. Don’t be afraid to say how much the RPF needs. Since it is a 503c now, the operating costs should be available to the public, but that would take some research for each of us to find. I know that we want to raise as much as possible, but if there is any chance that the operating costs or project monies are not being met, the supporters of the site will dig deeper to make it go.
Also, recently the march of dimes did a ‘jail and bail’ type thing that most of us could do. No walking or marathons involved. I’d totally be willing to do something like that, I just have no idea how to set it up. Here’s the link to the jail and bail thing so you can just get an idea. Maybe some of the techies on your team could figure out how to do something like this: http://jailandbail.marchofdimes.com/
The RPF site has only just soft launched although we got our nonprofit status back at the beginning of the year. There has just been 24/7 work that has made it hard to get everything done at one time, as I tried to convey in the post. So, the website is still in progress, but it’s off to a good start. Anyway, the financials all have to be in order and available according to the laws that govern the status. Of course, last years’ financial statement cannot be published since there is not one yet. I’m working a page to make that all more clear on the website. So far, there are no operating costs since we have all worked for free. Obviously, we can’t get very far that way and it will not be that way in the future … especially with the big goals that we have.
Oh, I know it just got started. Am waiting with bated breath for the forums lol! I was just trying to think of how to get some money comin in for the future. I mainly wanted to say don’t be shy about asking for donations. 🙂 Even though you guys have been working for free, there are still costs involved, like domain hosting and such.
Thank you. It’s very hard to talk about money because I fear that while you and those who read all the time do understand and trust that we would do the right thing, there can be bystanders who misunderstand. So, I want to make it as clear as possible. Like most charities, we are very careful to do things the right way.
Yeah, I know what you mean, and I have seen some “charities” who are ONLY after money. However, with the number of fans that you have who’ve been watching you do the work that you do, and future supporters who come along -because- of the work that you do, there should be no question that the donations the foundation gets will be spent wisely.
Anyway, I think that there are probably a lot of us who are not shy about asking for donations, so please just keep that in mind, maybe think about tools that your supporters can use to help raise money, outside of the donation button. 🙂 I know you’re busy with a million things right now, just thinking aloud about future stuff here. 🙂
Please do feel free to ask others on our behalf. There will be some more formal campaigns coming to be sure, but there is a specific need now, too.
Hi Kelly!
I have been keeping up with your blog for awhile now and even started one of my own: http://thedailychronic.wordpress.com! I am 26 and was diagnosed with RA 2 years ago after several years of pain and misdirections.
I am interested in learning how I can help with the Rheumatoid Patient Foundation. Is that something you started? I am a graphic designer and work in advertising, so I can maybe help with promoting the foundation.
Let me know what kind of things you are looking for and I’d love to keep in touch!
All the best,
Lauren
Hi Lauren,
There is a tag on the Tags List that will bring up all the posts that talk about the new foundation. I got the link for you https://www.rawarrior.com/tag/rheumatoid-patient-foundation/.
We want everyone to be able to help – there is a specific time schedule with the events that are upcoming – so we are focusing on this first video project. If you have some ideas how you can promote the foundation feel free to email me. I’d love to hear them. One idea I’m working on is a badge for personal blogs like yours and mine to display.
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http://livingrheum.wordpress.com/2011/09/30/together-we-can-make-a-difference/
Hope this helps and you approve of it Kelly. Anyone can share the need on their blog or whatever too so please share as well.
Kelly,
We are so pleased that all the work you have done is reaching fruition–congrats! But we recognize the need for even more support for you now, and we will all start passing the word so that you get the help to keep moving on this! I’m sure we will help as much as possible–I liked the idea of each area perhaps doing a fundraising “walk” or some other fund raising project. If anyone has any good ideas of new ways to produce funds, please post them to give us a variety to choose from–sometimes one idea will work for one area and not another! Thanks!
Done! I love Paypal ..makes it so easy! I am not shy, so I say to all of you who come here and get a brilliant piece of information or some tender hugs that was much needed at that time, send some real cash to help! Actions speak louder than words.
Soon, we can put together a more formal fund-raising campaign and a more full “launch” of the new RPF website. This was personal post to my own readers to let you know about what is happening and the need. Frequently, our readers say that they want to know how to help.
Thank you to those who responded on the first day asked!! I hope others will continue to respond both with donations and by spreading the word.
AWESOME VIDEO! The artist was fascinating! The points made were excellent—
Kim
Kelly— thinking again— ARE YOU DELEGATING?? I hope so– I have trouble doing it myself. I do not live far from you, and I have accomodations anytime near you– so– again, if we need clerical, busy work… I would just have to time it so Tom could stay and watch dogs at home…But- I am not proud and will do anything needed— Kim (you have my cell)
If I can think of any busy work, I’d love to have you. Probably will.
Hope you can also get some donations at the ACR meeting in November. Will try to send you a bit here before then though. Any docs willing to be on the advisory board? Maybe a brave rheum doc or other doc that has RA?
Which post did you have to take down and are there some discussions or related links somewhere?
I’m all in!!! Since I recently lost my job in the Corporate world 🙁 I have plenty of time to help! I have some marketing & fundraising experience but my forte in training. I’ll help where ever I can!! I’m so excited about this becauase we finally have a way to present a unified voice. Yay!!!
Just donated! Kelly, you always have my support, be it financial or otherwise. I am so grateful for the work you do for us and the fact that you give us all a voice. Also, in regards to an earlier post by Debby, I would love to plan a 5K or fun run or something, so add me to that list for the future! 😉
Sending hugs your way – and thank you again!! 😀
Dear Hayley, thank you! You know our pic is the screensaver on my phone! If you or anyone would like, we’d love to help you plan an event to raise awareness for RA or funds for RPF or both! We have lots of great ideas but we want local girls like you and Deb in charge. So watch the RPF site for more on that very soon!
Oh Kelly!
I am so very proud of you; not only as a fellow rheum sister but as an empowered patient advocate as well. You help remind me to keep on keeping on. That when the going gets tough we will still make it through. If I can help in any way please let me know. Us advocates have to stick together and support one another….after all we’re all sitting at the health care round table with the same goal in mind. Positive progression and equal rights!
Keep that head up love; I’m rooting for you!
THANK YOU!! Those words are so needed tonight. You are a blessing too.
Kelly,
As always, you are a complete inspiration to me! I will spread the word to everyone that I know about the need for donations. Also, there is a website at http://www.chipin.com that will track donations and help you send and or post information about your cause to potential donors. It is completely free. I use it to monitor the donations for my daughter’s trip to Europe next summer. My family, like so many others, is continuing to struggle financially right now but I will try to help as much as I can. My thoughts and prayers are free so I will keep those up in support of your huge undertaking on behalf of us all!
Gentle hugs!
Rachael
thanks – we have looked at using a couple of those but they all took a % off the top. I’ll go look.
Just made a small donation. It feels so good to help in any way that I can. Kelly, you are the most incredible person I have ever known. You are an inspiration to me and to so many others. Please try to make sure you take a little time for you during all of this. I know in mt heart that the RPF will find its way and will soar!!
I would love to help any way I can- I live in west GA, anyone in Atlanta area we can come up with fundraiser etc.. I will check RPF website. I, like so many others, am struggling financially but will donate whatever I can to help!
I have experience in management, customer service, any clerical (typing slower these days lol) however we can all contribute to make RA a disease that is as publicly known as say cancer- Kelly, prayers to you (& your beautiful family) & God bless again & again! You continually inspire me to take control of my RA & keep fighting!
((hugs)) ::stars::
There is a new group forming there Danice. Maybe you’ll want to join up with them. Let me know & I can try to put you in touch.