Article: Dollars For Research: the BIG Chase Contest Begins

Article: A Chase Life-line for ME/CFS Research: the BIG Contest Begins

You can view the page at http://forums.phoenixrising.me/content.php?424-The-Chase-Community-Contest-ME-CFS-Research-Lifeline-WPI-CAA

 

Thank you Cort, for you clear and concise explanation of why and how. Namaste,
Kim

 

Don't forget, folks, both these groups only get one shot at this. They'll never be able to enter any Chase Community Giving contests again. So if you want them to win, especially win big, try to make a big effort - which means not just voting yourself but trying to get others to vote also.

 

If you have any problems voting, go to the charities' Facebook pages (or ask here) and hopefully there will be a way around it. We worked around problems in the past for the odd person.

 

WPI link needs fixing!

Hi Cort - great article - but when I click on the WPI link I get a message saying the location doesn't exist or is unavailable. I got the following link from the WPI's own site, which works:

http://apps.facebook.com/chasecommu...nstitute-for-neuro-immune-disease?src=twitter

 

Just wondering if autism, GWI and Lyme Disease organisations have been made aware of this voting especially in regard to WPI?

 

CFIDS Association of America's "BIG IDEA" for Chase Community Giving

http://on.fb.me/itklJE
i.e.
http://www.facebook.com/notes/the-c...at-midnight-edt-please-vote/10150260426630539
(150 word limit)

In spite of its silly-sounding name, chronic fatigue syndrome (CFS) is as
disabling as cancer, multiple sclerosis and late HIV disease. As many as 17
million children and adults around the world have CFS, and we still don't
understand its causes. To end the suffering CFS inflicts, the CFIDS
Association of America is building a critical mass of rigorous research that
validates the biological basis for CFS and leads to better ways to diagnose
and treat it. We're putting research first to achieve the vision of a future
in which the life-altering disability, stigma and isolation of CFS no longer
exist. Your vote will help us award grants to support new research studies
exploring diagnostics and treatments; expand our SolveCFS BioBank with more
samples and clinical information on patients and healthy volunteers; and
build a data-sharing platform to help researchers aggregate and analyze
information using powerful bioinformatics tools. Based in Charlotte, NC, our
work has worldwide impact.

 

Do we vote for one only or can we vote for both?
How many times can we vote?

 

You can vote for up to five charites, but can only vote for each one once. I think it would be good to only vote for CFIDS Assocition and WPI becuase we are going to be in big competition with the others. Or you could save your three votes and try to swap votes with another charity close to the end, but it should be someone that is further down the list than WPI or CAA in my opinion.

 

I dropped flyers off at Dr. Lapp's office this morning to hand out to patients this week, and I will take some to the Charlotte CFS support group meeting tonight

 

CFIDS Association of America's "BIG IDEA" for Chase Community Giving

http://on.fb.me/itklJE
i.e.
http://www.facebook.com/notes/the-c...at-midnight-edt-please-vote/10150260426630539
(150 word limit)

Thanks Dolphin - I know there's alot of frustration towards the advocacy arm of the CAA but I think this shows that your votes will go to aid research and they are quite good at funding good research that gets major funding from the NIH (which is the name of the game)

Your vote will help us award grants to support new research studies exploring diagnostics and treatments; expand our SolveCFS BioBank with more samples and clinical information on patients and healthy volunteers; and build a data-sharing platform to help researchers aggregate and analyze information using powerful bioinformatics tools.

So if you're unhappy with the CAA if you can just grit your teeth and vote your vote will go to providing more research for ME/CFS - which is, of course, our key goal. Even if you gave the CAA a 'C' grade for research it would still be worth voting for them because it is Chase, after all, that is putting the money - and we need more research - even if its not of the ground-breaking quality of XMRV.

The same is true with the WPI; XMRV is in some trouble but even if XMRV doesn't work out the WPI was still doing really innovative work with pathogens and the immune system before XMRV and it's opening that huge new clinic that promises to tie research findings to treatment.

We win by supporting both organizations

 

Hi Cort - great article - but when I click on the WPI link I get a message saying the location doesn't exist or is unavailable. I got the following link from the WPI's own site, which works:

http://apps.facebook.com/chasecommu...nstitute-for-neuro-immune-disease?src=twitter

For some reason it can be hard to get the links right for Facebook. If you enter the site from one direction - the link will send you to Chase Community not the WPI's address. I think both links are pointing to the right address now.

 

Just wondering if autism, GWI and Lyme Disease organisations have been made aware of this voting especially in regard to WPI?

Hi Francelle,

I posted this message on one of the other threads earlier:

The Autism Community has stepped up. What a wonderful message of support for us!

A message from Kent Heckenlively; the autism community joins in getting votes for WPI on Chase Community Giving.

by XMRV Global Action on Thursday, May 19, 2011 at 2:00am

Dear ME/CFS Patients:

The autism community stands with you in the effort to get money for the Whittemore-Peterson Institute.

Starting on Thursday morning the following autism organizations will be sending out multiple requests throughout the week urging the members of our community to vote for the WPI in the Chase Community Giving Program:

1. Generation Rescue - Will be sending out approximately 13,000 blasts through Facebook and Twitter.

2. Talk About Curing Autism - Will be sending out approximately 15,000 blasts through Facebook and Twitter and will do it every single day of the competition.

3. National Autism Association - Will be sending out approximately 11,000 blasts through Facebook and Twitter.

4. Age of Autism - Will be sending out approximately 1,500 blasts through Twitter, and will post on Facebook, in addition to a possible article.

All of this comes about as the result of Hillary Johnson's efforts to create "cross-pollination" between the ME/CFS and autism communities. I was honored that she sought me out at Autism One last year because she believed I would understand the possibility this research offered to our community.

I was also fortunate to spend a good deal of time with Dr. Judy Mikovits and understand that she is an amazing woman and a remarkable scientist. I know there are some who question her outreach to our community, but we also know how it feels to be abandoned by the medical profession. We have shared in this feeling as we have sought to understand what happened to our children. For those who have questioned the outreach to our community, I hope you now view it in a different light. To my sisters and brothers in the ME/CFS community I say we are stronger together than we are apart.

Although the message is going out to the autism community, it is not a time to be complacent. I have tried to educate our community about the relevant issues, but who knows how many will answer the call.

For that reason I have made a personal committment to get an additional 100 votes from my family, friends, and professional contacts. I urge each one of you to set such a goal. It can be as few as ten, but when this week is over I want all of us to know we have done our best to support the WPI.

All the best,

Kent Heckenlively

http://www.facebook.com/notes/xmrv-g...50195916471797

http://www.facebook.com/notes/xmrv-g...50195916471797

 

For some reason it can be hard to get the links right for Facebook. If you enter the site from one direction - the link will send you to Chase Community not the WPI's address. I think both links are pointing to the right address now.

Thanks, Cort - the WPI link works for me too now. Weird.

 

Hi Francelle,

I posted this message on one of the other threads earlier:

The Autism Community has stepped up. What a wonderful message of support for us!

That's great, shannah - so many people in their contacts list! That should make a huge difference.

 

That's great, shannah - so many people in their contacts list! That should make a huge difference.

Great move by the WPI! That's what its going to take to win the big money. Congratulations!

 

Wow - a huge endorsement from the autism community - this rocks :victory:

 

Right now - according the Community sites the WPI has 1450 and the CAA has about 750 votes....

The WPI is in 7th place (good!) and the CAA is 25th (wah...) behind "Save a Pet" and the "Shakespeare Center of LA"

 

I posted this elsewhree but think it's worth posting her:

Everyone- please flood the WPI and CAA pages with comments about the desperate and URGENT need for this money!!! Remember- even if we don't make the top 5, Chase still picks one extra charity it deems worthy for a 200,000 dollar prize!! We need to make our organizations STAND OUT and tug at the heart strings so that the Chase advisory board sees how critical and worthy this is. They won't award that money to a group whose members' comments don't appear enthusiastic on their own voting pages. By doing this, we at least have a shot at that extra money!!!

 

I am not Facebook-savvy but I hope someone that is can post on Gulf War Illness groups on Facebook to urge them to vote for the CAA and WPI. In particular the WPI has Gulf War Illness in its portfolio of illnesses to focus on and the CAA has sponsored research by Drs. Gordon Broderick, Nancy Klimas and James Baraniuk that also affects GWI.

You can refer GWI folks to this site and tell them to read page 8 to see how GWI and CFS are related:
http://cdmrp.army.mil/pubs/pips/gwirppip.pdf