THE new Pepsi Thread

[thereishope]

.

Edited June 2, 2010 by Vickie

[airial95]

I've changed the link that I'm posting to facebook/email reminders to take folks straight to the search page that lists our 10 causes. It's an ugly link, but for example

 

 

 

http://www.refresheverything.com/search/?q...p;ic=0&im=0

 

This takes them directly to our list from this morning...and makes voting super quick!

[KaraM]

Now that was awesome! Thanks!!!!

 

I've changed the link that I'm posting to facebook/email reminders to take folks straight to the search page that lists our 10 causes. It's an ugly link, but for example

 

 

 

http://www.refresheverything.com/search/?q...p;ic=0&im=0

 

This takes them directly to our list from this morning...and makes voting super quick!

[thereishope]

I am copying that link idea and will post one in a daily post. Please note...I am rotating some causes every day. That way we reach more causes and get more support. Some will stay consistent, some will vary. This is the only way we will be reciprocated fairly. For family, I understand letting them keep a main link, for us, please visit the June thread beforevoting so you have the right link to votes. Thank you

 

June thread (hopefully the June one will replace this one sooner or later) The JUNE thread has voting info

http://www.latitudes.org/forums/index.php?showtopic=8449

Edited June 2, 2010 by Vickie

[P_Mom]

Dr. Cunningham's (our nominee) response to how the Pepsi Refresh grant money could be used:

 

"We would use the funds to continue to test

patients and try to make sense of the data so

that there will be less confusion about the disease that affects

children with OCD and unwanted movements.

 

Getting a test FDA approved is a possibility but this takes

some time and is relatively involved.

 

We also are trying to understand the mechanisms of signaling in the brain

and correlate the antibodies with the different types of symptoms; so there are lots of experiments

we could do with extra money, BUT,

 

If you as parents wanted us to use all or some of the money for

children who cannot afford the tests, this also seems a good use of the grant.

 

Experts in Lyme disease also want us to test children with Lyme

disease for these anti-neuronal antibodies and signaling in the brain."

[thereishope]

.

Edited June 3, 2010 by Vickie

[P_Mom]

If you are having trouble signing in to the Pepsi Refresh site, switch to the Mozilla Firefox browser. We've been told by numerous people that they now have great response times. Now, GO VOTE!

Firefox Browser | Upgrade to the latest version of Firefox | Free Download

www.mozilla.com

The Firefox Web Browser is the faster, more secure, ...and fully customizable way to surf the web.

[JAG10]

Isn't FDA approval what would result in the most significant advance foward in terms of definitive dx and insurance coverage? Would that be the most meaningful use? It may take awhile, but it'll never happen if they don't get started.

 

This isn't going to come off right, but... using the money to pay for the tests of those who would struggle to come up with the money on their own... won't help to get the treatments the child could need, covered by insurance, if their subsidized test comes back PANDAS.

 

Also, while the connection with Lyme could be fruitful for both diseases, this grant was intended to further PANDAS research. Lyme has way more public recognition, so perhaps the Lyme experts could come up with their own funding for Dr. Cunningham.

 

I tried to go back and make this post sound less crabby, but not much luck

[P_Mom]

I was also a bit concerned with the reply, but, in all fairness had to post it.

 

I will e-mail Dr. Cunningham with our concerns/requests.

 

Yes, FDA approval is what I was/am hoping for out of all this.

[JAG10]

Well, Kelly, considering all of the effort and love you've poured into this project... and that you submitted the application.... I would think she would weigh your opinion considerably!

 

 

I was also a bit concerned with the reply, but, in all fairness had to post it.

 

I will e-mail Dr. Cunningham with our concerns/requests.

 

Yes, FDA approval is what I was/am hoping for out of all this.

[Megs_Mom]

I was also a bit concerned with the reply, but, in all fairness had to post it.

 

I will e-mail Dr. Cunningham with our concerns/requests.

 

Yes, FDA approval is what I was/am hoping for out of all this.

 

My fav is using the test to run experiments to find the relationships between the antibodies and the CamK levels (are some tics & others OCD, for example).

 

I think $50k is a great start - but IMO it's not enough for the entire study to get to the FDA approval. I actually like the idea of adding the Lyme portion too, because until we can figure out how to differentiate between the variety of illnesses that cause the CamK to rise, and what the appropriate treatment will then be, this test will have difficulty in widespread acceptance. I lean towards respecting how Dr. C wants to spend the funds. I'd also be in support of helping more families get the test.

 

The money will go to great use with Dr. C, whatever the specifics.

[JAG10]

In the rules that Pepsi outlines in the application, a specific goal has to be identified with progress that can be measured and that information has to be shared with Pepsi so they can publish it.

 

So, it could be something like... 125 children were tested @ $400/test, but I don't think it can be a buffet of choices at Dr. Cunningham's discretion.

 

Kelly-Did you have to identify a specific research "goal" when you submitted or can that be amended once the grant is won? The 2-3 wk waiting period after voting stops is for Pepsi to make sure the purpose of the application meets their guidelines. I would hope if there are issues, Kelly would be given the chance to make adjustments.

[MichaelTampa]

Yes, they are all good things Dr.C. could do with the money. I do think that an FDA approved test would be incredibly meaningful, giving the family a much better shot at credibility with the doctors, before test and after test. It's a matter of when it's time to start that approval process, when you know enough to make a worthwhile test.

 

I think both the PANDAS and lyme communities would have a great deal to benefit from testing more lyme patients, and particularly those children and adults that recently contracted lyme. Does a high test result indicate "PANDAS or lyme or something like that", or does it really indicate PANDAS--how useful will the test be without that knowledge? The question is not trivial, since so many lyme patients have PANDAS, a good number of the PANDAS patients who pursue lyme testing get some kind of result that at least hints at lyme. Lyme testing nowadays is so difficult, both communities could really benefit from that. Perhaps the lyme community would help fund that aspect, perhaps not. My sense is the lyme community is not too aware of the PANDAS and Dr.C.'s research (can't remember seeing a PANDAS post on lymenet.org), so it would likely need to be really explained well to them. To be clear, not suggesting here that there isn't a true PANDAS without lyme, I believe there is, just that, telling the difference is hard and would be really useful to many.

 

I would also tend to trust Dr.C.'s sense of where to go next. The one thing where she probably needs the most input, though, is how much to fund research and how much to help fund those getting tested. That's kind of a broader question.

 

Michael

[thereishope]

IMPORTANT

 

 

Please follow this list for the rest of the day. We are ONLY supporting JETT and Sophia's Cure in the $250K catgory. Do not vote for any others in the 250K at the time. Thank you!

 

www.refresheverything.com

Paste into search box...

PANDAS / JETT / "Sophia Cure" / "james lacerenza" / "gavin thomas" / "Bethany Berg" / "Ashlea Denton" / "Tunes for Troops" / "Caritas group" / "Ataxia"

 

 

Kelly, I will email you tonight with more info.

Edited June 4, 2010 by Vickie

[parents4eyes]

x

Edited July 17, 2010 by parents4eyes