Sunday, April 24, 2011

Vote WPI & email Obama: Two Small Actions for Huge Results

Friends, these actions are important enough that I'm blogging when I shouldn't.

I pushed too hard last week (and of course we never know how much is going to prove to be too much), so now I'm paying in pain for having dared to run a couple of errands, go to a couple of appointments and write short posts a couple of times. It hurts enough to make it clear to me that it's not worth it to push. I need to conserve more of my limited activity-time to take care of myself and my two children.

Nevertheless I also need to blog right now, to let as many people as possible know immediately about a couple of quick actions that could have tremendous results. That's for me and my two children,too, just as much as it's for millions of other sufferers. I hope healthy people will take a moment to pitch in and help.

Please join me in spending a little energy on these quick actions. I believe actions both can be done from any country. If it turns out I'm wrong about that, please let me know in the Comments and I'll edit this. So, here are the two actions, with details further below.

~Actions~

Action 1: Please email President Obama and ask him to follow up on the promise he made to Courtney Miller in response to her question about her husband Robert Miller's illness. 


Action 2: Please vote for Whittemore Peterson Institute for Neuroimmune Disease in the contest for $20,000 from Chase Community Giving.


~Details~



Details for Action 1: Please email President Obama and ask him to follow up on the promise he made to Courtney Miller in response to her question about her husband Robert Miller's illness.

On 21 April 2011, President Obama held a Town Hall Meeting in Reno, Nevada. Courtney Miller, activist wife of neuroimmune disease sufferer and activist Robert Miller, was called on. For a full transcript and video of the entire Town Hall you can go to Shallow Nation.  Here's a transcript excerpt of just that question and answer:

It’s a young lady’s turn. Right here, in the red. Right in front. You got a microphone coming.

Q Mr. President, my name is Courtney Miller (ph). And I want to thank you for returning science to the national priority. And I need to ask for some help for my family. My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis. And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness. And I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games, if there’s a way to make improvements on that.

THE PRESIDENT: Well, let me, first of all, say that you are absolutely right that we’ve tried to put science back where it belongs. (Applause.) I am a Christian and a person of faith, and I believe that God gave us brains to figure things out — (applause) — and that we’ve got to use science to make life better for our families and our communities and this planet.
That’s one of the reasons why part of the Recovery Act was reinvesting in National Institute of Health — NIH — which does a huge amount of the basic medical research that ends up then creating so many of the scientific advances that are making our lives longer and making our lives better.
Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment. Okay? (Applause.)

Bob Miller and family have sent out an appeal for follow-up emails to be sent to President Obama. You can read that appeal in this note on Facebook from R.M.C.F.A (Rocky Mountain CFS / ME & FM Association.)

The web link for contacting the President is: http://www.whitehouse.gov/contact and the Millers ask that we select "Health Care" in the subject line and keep our messages brief and to the point.

That was pretty easy. Now, the second one is even easier and can mean tens to hundreds of thousands of dollars for crucial research and urgently-needed clinical care for millions of patients suffering worldwide.



Details for Action 2: Please vote for Whittemore Peterson Institute for Neuroimmune Disease in the contest for $20,000 from Chase Community Giving.

Chase Community Giving is a program via Facebook which Chase Manhattan Bank uses to distrubute millions of dollars to worthy causes, choosing the recipients by popular vote. Every Facebook user who "likes" the Chase Community Giving page gets up to ten votes. Please cast one of those votes for WPI, the Whittemore Peterson Institute for Neuro-Immune Disease.

WPI is committed to solving neuroimmune diseases and sharing their solutions worldwide. So your vote helps the ME patient in Scotland and the patient diagnosed with "CFS" in New York, the child in Belgium with Autism Spectrum Disorder, the mom in Spain with Fibromyalgia and the veteran in Montreal with Gulf War Illness.

WPI is integrating its research wing with its patient clinics and sharing information with researchers and clinicians worldwide, to get as many answers as possible out to as many patients as possible, as quickly as they can. The opening of the clinic has been stalled by lack of funding but a generous foundation grant from NV Energy is going to help, as does every donation of a dollar, a pound or a Euro in the Count Me In campaign.

One foundation grant and thousands of individual private donations won't be enough. It's rare that we have an opportunity to influence the awarding of a gigantic foundation grant, but that's what we get to do through Chase Community Giving. WPI is competing for $20,000 in round 1 of voting, and will compete for up to $500,000 if it advances to Round 2.

So the quick action is this---and if you don't have a Facebook account please consider taking a moment to create one, even under a pseudonym, to help along this excellent cause---start by going to Chase's https://www.facebook.com/ChaseCommunityGiving page on Facebook.

Now, press "Like." (You can always "Unlike" later if you want to.)

Next, go to where the voting happens:  http://apps.facebook.com/chasecommunitygiving/ 

In the search box labeled "Find Charities...." on the upper-mid-right of your screen, type in the words: Whittemore Peterson Institute.

That gives you a link to a page with a bit of information on WPI, and a nice big button labeled, "Vote." Press the Vote button and you're done!



Of course it would be great if you would also share both of these actions with all of your contacts, asking that they, too, send an email to the President and cast their Chase vote for WPI. These actions take so little time and could hold so much promise for millions who, like me, spend a lot of time in bed with their pain, unable to write a blog post. That is, people in the situation I'll be in, a couple of hours from now, as I pay for writing again.

Thanks so much, and please increase global happiness: Enjoy every moment of pain-free living you can get.

EDIT: Goes to show how fooled I can be.

President Obama is far from walking his progressive talk. Meanwhile, WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

6 comments:

  1. Thank you, Kassy for putting this all together in one clear and concise post. I have completed both actions and have shared repeatedly. I'm starting to get worried that my "friends" are going to get tired of me very soon, but at least maybe some of them will join in. Thanks again.
    Pat

    ReplyDelete
  2. Thanks, Pat. I know that worry and I bet lots of us have it, but I keep on sharing. They can always block, screen or delete if they're annoyed. I hope they don't.

    Certainly I have lots of friends whose repeated posts on one theme might not be of tip-top interest to me, be it their pet or their hobby or some really good cause that just doesn't happen to be MY good cause., but I try to pay attention and respond as able and appropriate, out of caring for those friends. Here's hoping we'll get the same consideration.

    ReplyDelete
  3. Thank You Kassy for writing this blog post.

    there are also other ways that we can use to reach the President that are listed in this blog post.. Please use every method possible.

    Plz send Mail 2 Pres.Obama re: #MECFS+#XMRV http://bit.ly/fzlpQZ
    "FLOOD The White House" Campaign

    *Hugs*

    ReplyDelete
  4. Done. This is my note.

    Mr. President,

    I heard about your promise in Reno to have the NIH help inform you about myalgic encephalomyelitis/chronic fatigue syndrome.

    I developed it in 2004, when I was 28. Since 2007, it has left me bedridden. My husband is my caretaker.

    If you know nothing about ME/CFS, this video is a good place to start.
    http://www.youtube.com/watch?v=zFUwg01brEk

    The Whittemore Peterson Institute is our best hope for treatment and a cure. They linked ME/CFS to the recently-discovered third human retrovirus, XMRV - but they are receiving no federal funding.
    http://www.youtube.com/watch?v=KcQ2aXIIcao
    http://www.wpinstitute.org/xmrv/xmrv_qa.html


    Research has also shown that XMRV is found in 4% to 7% of controls. That means it's in the blood supply. This affects everyone.

    Please help us get more federal funding for the research that could help the million of us suffering from ME/CFS in the U.S. get our lives back - and so more won't be destroyed.

    Thank you.

    Sincerely,
    Jocelyn W.

    ReplyDelete
  5. Anonymous21 May, 2011

    From the Whittemore Peterson Institute Facebook page:

    A message from Annette Whittemore .

    "As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we're asking for people to use any unused votes to help support the CAA. Many have already voted for both and we thank you. Let's make medical research and patients a priority on this top 10 list for Chase."

    ---

    Links for the two organisations are:

    (i) the CFIDS Association of America: http://t.co/VZEd5Pk

    (ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

    ReplyDelete
  6. There's currently a vote ending in less than 2 days time (11:59am EST Nov 22).

    Some details below from latest leaderboard (2 days 6 hours before end)
    ----------

    As nobody was doing this (that I know of), for recent leaderboards I have been following the votes being got by the leading 9 ME/CFS groups along with how much 100th position has gone up by (101st would be slightly more interesting but one can't see that).

    For the last 7 12-hour periods, 100th position has gone up by
    (chronologically): +39, +44, +53, +40, +61, +75, +50. At the last leaderboard 100th was at 882 votes. That's with 2 days, 6 hours to go.

    Looking at the last two jumps (i.e. +75 and +50) (it would be extra work for me to calculate too many periods) apart from the IACFS/ME, the groups have been losing ground.

    It is going to be touch-and-go for lots of groups whether they get the $25,000 or not.

    #30 INTERNATIONAL ASSOCIATION FOR CHRONIC FATIGUE SYNDROME/ME Chicago, IL http://bit.ly/s48mcK (+74) 1,228 (+53) 1,281

    #34 CFSKNOWLEDGECENTER INC Wellington, FL http://bit.ly/lkvWpU (+50)
    1,194 (+37) 1,231

    #56 MASSACHUSETTS CFIDS/ME & FM ASSOCIATION Quincy, MA
    http://bit.ly/sJXeQ9 (+52) 1,016 (+50) 1,066

    #72 ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION Denver, CO http://bit.ly/s5fAJh (+38) 931 (+36) 967

    #76 WI MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, ASSN, INC.
    Sun Prairie, WI http://bit.ly/mlmr0c (+42) 906 (+39) 945

    #90 ENTEROVIRUS FOUNDATION INC San Francisco, CA http://bit.ly/lzhRfi
    (+47) 862 (+36) 896

    #93 NJCFSA Florham Park, NJ http://bit.ly/tXpa46 (+54) 850 (+43) 893

    #158 CFOG, INC Kennesaw, GA http://bit.ly/kdavB3 (+47) 481 (+31) 512

    #180 CONNECTICUT-CHRONIC FATIGUE AND IMMUNE DYSFNCTN SYNDROME ASSOC INC Milford, CT http://bit.ly/uqIqF7 (+20) 368 (+23) 391

    In previous CCG contests, there has been a charge towards the end of the contest from other groups. As is clear, the ME/CFS are generally just hanging in there - not keeping up with how much 100th is jumping up by but perhaps able to hold on if things go right. 4 groups are within 85 votes of 100th position.

    A few votes could make all the difference ...

    ReplyDelete