*NOTE: The blog post today will be a bit different. Our advocacy group, Gastroparesis: Fighting for Change, has begun discussing our various projects and efforts for 2016 -- and WE NEED YOUR HELP!!!!
We wish to accomplish much during the course of this upcoming year, but we cannot do it without your participation. Please consider joining our group. We need PEOPLE TO HELP US FIGHT! Here is the link: https://www.facebook.com/groups/Gastroparesis.FightingForChange/
I have compiled a list of projects that we are pursuing or wish to pursue this year and have posted them below. (I have also included this list as a document in our group files section. The list below is a direct copy of what is posted in our group.) Please read and consider joining our group and participating in all or one of the below projects. We welcome suggestions and creative ideas for additional projects as well!*
There are a number of projects we hope to pursue this year. I will try to list the major ones here and hope to get ideas regarding additional projects you all might like to pursue as a group. First, and foremost, is getting our bill (HR 2311) passed. There is no project of greater importance than that, as I see it – but we can pursue other projects simultaneously, I think. So, here is a list of the basics:
1. HR 2311: We ask that EVERYONE contact their representatives in Congress to get this vital bill passed. Right now it is in subcommittee, and if we don’t get more support, it will die there. It needs to make it out of subcommittee and to the full House; then it must make its way through the Senate. For your convenience, we have set up a link where you can send a letter asking for support for this bill to the entire Congress at https://buildquorum.com/actions/1996. To date, this letter has only been sent by 416 people. Quite frankly, in an online community of 10,000+ strong and in a general population of possibly 5 million plus, this is absurd! We really need your help in getting this letter sent. Please sign, send, share on your walls, etc.! I cannot possibly overstate the importance of this bill. It is pretty much everything we could hope for and would make a great difference if passed.
An even better way to support this bill is to contact your House representatives directly, one-on-one, either via telephone, in person, through e-mail, or by posting on social media sites. I have included a sample letter in the files section of the group that you may alter and use to send to your congressman. The file also includes a list of those representatives who would likely be sympathetic to our cause (in table form). I have included their names, websites, and Twitter handles. You can find additional contact information for these representatives by visiting their websites. It is VITAL that they hear from you. At the very least, you should contact your own representative for your own state district (which you can find by visiting https://www.opencongress.org/people/zipcodelookup or by going to any number of other sites and entering your zip code). If POSSIBLE, you should contact EVERY member of the lists that are included in this document.
You may find information and a text of the bill at https://www.govtrack.us/congress/bills/114/hr2311. Currently, we have only 7 cosponsors for this bill. GovTrack is giving it only a 2% chance of being enacted. But YOU can change that! YOUR REPRESENTATIVES NEED TO HEAR FROM YOU!!!! I cannot overemphasize the importance of this. It takes only SECONDS to send these letters. We should be getting 100% participation in this – and yet we have only 416 signatures at the Quorum site. WE NEED YOUR HELP!!!!
2. State Proclamations: I will be making a separate post about these, but basically, we need your help in establishing August as Awareness Month in every single state. We got proclamations approved in 13 out of 50 states last year, and we would love to see them in ALL states this year. It is very simple to request a proclamation from the governor establishing this in most states, but you MUST BE A RESIDENT OF THE STATE IN ORDER TO REQUEST A PROCLAMATION. I would love to be able to submit the requests in all 50 states, but I cannot do that because I am only a resident of ONE state. THIS WILL NOT HAPPEN WITHOUT YOUR HELP!!!! I will put detailed instructions as to how to go about this (as well as a document with the wording of the proclamation in a separate post. We have some who have already volunteered to submit requests in their states, and I will post a running list of these and their status.
3. Website & Community Page: We have a website at www.curegp.com that we will be updating as time allows. I continually make changes there and encourage you to visit. We also have a community page at https://www.facebook.com/Gastroparesis.FightingForChange.Page/. If you would be so kind as to “like” our page, we would greatly appreciate it. This page keeps us in the public eye and reaches people outside of the groups. It is another way to make the public aware of gastroparesis and our efforts. The more “likes” and visits we get, the more visible we become. It is a very simple way to help our cause, and we would greatly appreciate your support!
4. GP Reports: Ms. DST (name omitted) has been making short video clips that seek to show the “humorous” or “light” side of our community members. She will provide additional details and information in a separate post, but I wanted to mention it here so that you can be looking for her post. Currently, Ms. Deb is the only one who has recorded these clips, but we will be seeking to expand this and include clips by other group members on our YouTube channel. We have even considered doing “interviews” of sorts in the future if we can manage the logistics. Please let Ms. Deb know if you would be willing to help with this.
5. ER/Doctor Project: I am asking for your help on a project I would like to undertake. I would like to collect stories from you all regarding good and bad experiences you have had with your GIs and/or with the ER. I know these stories are out there because I see them in the support groups every day! My intention is to use excerpts from some of these (either anonymously or with names -- with your written permission) in a piece I intend to write and send to our buffoons in Congress who do not think we need a bill, or disability, or even an awareness month; to insurance companies and medical associations/facilities; to the FDA; and to any other groups I can find who need to address this situation.
My plans as to how I will go about composing and delivering this piece are a bit sketchy at this point, but I am going to do it in some fashion if I can get people to contribute. What I am requesting from you is that you write your short story/vignette of a single experience (good or bad) that you have had with your GI or ER, in as much detail as possible, along with your feelings about this, and either post it here in the comments or send it to me via PM. I WILL ALSO NEED YOUR WRITTEN STATEMENT THAT I HAVE PERMISSION TO USE YOUR STORY EITHER ANONYMOUSLY OR WITH YOUR NAME (EITHER OPTION OR BOTH IS FINE).
I requested these earlier but have gotten very little response. I would greatly appreciate your help! I would love to move forward with this project but cannot without more stories.
6. GP Store: We have a Fighting for Change store set up at https://www.createphotocalendars.com/Shop/gastroparesisfightingforchange. Currently, we have only our calendar for sale, but I would like to consider expanding this to include other sales items. ALL PROCEEDS go directly to the IFFGD and will be used to fund GP research. The money never touches our hands. Products are paid for on the site and are shipped directly to the customer from this site as well. It is a simple way for us to raise much-needed research funds. Unfortunately, I am not much of a designer, so help with designing t-shirts, totes, etc. would be greatly appreciated! Please let me know if this is an area where you would like to help.
7. Petitions: We are still seeking signatures on a couple of petitions that will benefit our gastroparesis community. The first is a petition to establish a NATIONAL Gastroparesis Awareness Month. Although we claim August as our awareness month, this has never been made official, and we have never been included on the National Health Observance (NHO) Calendar (http://healthfinder.gov/NHO/nhoyear.aspx?year=2016). The IFFGD/DHA led a push to get this introduced into Congress last year and were successful in convincing Rep. Gwen Moore to introduce a statement of support for this measure in Congress; however, we have not yet been granted official recognition. We need to put more pressure on the members of Congress to make this happen. Don’t we DESERVE an awareness month? You can sign an online petition to try to get this established at http://www.petition2congress.com/17439/proclamation-to-establish-august-as-gastroparesis-awareness-month/. PLEASE SIGN!!!! It takes only seconds!
Thanks to the efforts of RH (name omitted), we also have a petition to try to get the SSA to include GP in their blue book of disabilities as a disabling condition in and of itself. While this petition does not force legislators/policymakers or the SSA to act, it does put pressure on them to do so. You can sign this petition at http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/ng.
8. Mailing Items: We are also considering beginning a mailing campaign that would include sending some small token, along with a letter asking for help in spreading awareness of GP, to those who might be helpful in our efforts. Ideally, we would like to mail a spoon, green ribbon, or some other small symbol to legislators, medical professionals, insurance companies, the media, and other potentially influential parties as part of our efforts to spread awareness and achieve better conditions for our community. This would not be a completely coordinated effort – just a suggestion. We could develop a letter (or a few sample letters) that interested members could mail out, along with a token they have made or purchased, to these parties. The target of your mailing and the choice of items would be left up to you, as would any expense involved. We are not a nonprofit, so we do not have funds to provide for this effort. It is simply a suggestion/recommendation for those who wish to do something creative and beyond the scope of this group. We would, however, be more than willing to help create a letter that can be sent and/or help create a contact list which includes target locations/addresses. We could even choose a different target each week or month and then have all members direct their mailings at this particular target at once in order to maximize our effectiveness.
9. Food for Thought: Ms. RR (name omitted) had a wonderful idea for a variation on a current campaign that is being undertaken by another group/program: The details of this campaign can be found here: http://foodmatters.tv/articles-1/what-the-world-eats-shocking-photos. We could tailor it to suit our needs by taking pictures of what we consume during a typical week (or day) and then spread it throughout social media. Target date for this would be in August. We could hold a public launching event for this here on Facebook as well. Please let an administrator know if you are interested in being involved and/or helping coordinate this.
10. Social Media Efforts: We would love to see more group members participate in additional social media efforts such as Twitter, Pinterest, Instagram, and Blab. I tried to host a Twitter training event last year to help those who wished to be involved learn the ropes of Twitter, but I would say it was a COMPLETE failure since, despite my best attempts, only a couple of administrators showed up. Nevertheless, I would likely be willing to try this again if anyone is interested. I created a document of the basic steps and information needed to get you started on Twitter, and I can share that with anyone who is interested. I would dearly LOVE to host a Tweetchat and a Blab session for the Gastroparesis community this year – but it would have to be well-attended or it would be pointless. Twitter has been an INCREDIBLY EFFECTIVE source for getting information out and spreading awareness. Please consider joining!
11. State Groups: Lastly, though this is not exactly a project, we would like to address the issue of our state “Fighting for Change” groups. To date, we have had very few group members join their specific state groups. We would love for you to join your appropriate state group in addition to this main group. The state groups were created so that you could get to know others in your area a little bit better and have a closer support system. They were also established so that we can better coordinate any projects we might be working on at a local level. Currently, most are pretty small, but we are hoping that with your help and participation, they will grow over time and become very useful and helpful hubs for you. In addition, please feel free to invite family/friends from your state to join the state groups. They do not have to have GP to be members. We welcome any who are willing to learn about our illness and assist in our efforts to spread awareness. We still have some state groups without coordinators (or which need an additional coordinator), so if you are interested in serving as an admin in one of the "empty" groups, please just let me know. We welcome your help! Links to state groups can be found in the "Files" section under "Current List of State Groups & Coordinators.docx."
WE CANNOT ACCOMPLISH WHAT WE WISH TO ACHIEVE WITHOUT YOUR HELP!!!
PLEASE CONSIDER JOINING ALL OR ANY OF THE ABOVE PROJECTS!!! We are always available to assist you if you need additional help participating in projects. In addition, we WELCOME YOU TO SUGGEST ADDITIONAL PROJECTS here in the comments section. We are ALWAYS seeking input and creative suggestions that can help our cause!
THANK YOU SO MUCH FOR YOUR HELP!!!