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browneyesmom

Raising funds for research for Dr. Cunningham

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Yippeeeee... got this back from Madeline Cunningham this morning in response to email I sent her over the weekend... see below for the exchange we had... :~))) One step closer!!! :~))

 

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Dear Dr. Cunningham,

 

My name is Denise Grubbs. My 11 year old daughter was diagnosed with PANDAS about two years ago. The last several months have been very difficult for her as we also discovered an immune deficiency of IgG; she’s been unable to eradicate strep throat infection for several months. She is currently receiving HD IVIG infusions.

 

The reason I am writing is because with her input, I designed an Awareness Ribbon for PANDAS / PITAND… you should be able to see an image of it below. There has been a great deal of interest in the PANDAS community about getting it printed (on t-shirts, buttons, magnets, bumper stickers, silly bands, etc.) and I am interested in doing so; however, I want the profits to go to support more research for this condition. I realize NIMH has better funding through the government than you do. Thus, I would like to discuss with you how I might go about sending the funds to support your research. Please advise.

 

You can view a copy of the ribbon here: http://s258.photobucket.com/albums/hh275/dgrubbs1/Causes/

And these are the thoughts behind the design:

Support Awareness of & research for P.A.N.D.A.S. Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus:

GREEN ribbon represents the healthy future life we want for the victims of PANDAS, The HANDS represent us walking alongside our children, holding their hands, (taken from a photo my husband took of my PANDAS daughter and I holding hands – she chose the one she liked best) WHITE is for their innocence, SAWTOOTH edges for the episodic nature of this condition & its impact on the lives of children and their families.

Please share to spread awareness & support research.

 

Thanks so much for all you are doing to help our children ~ we deeply appreciate your work!!

 

Denise Grubbs, RN

 

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Dear Denise

Thank you so much for your kindness. The ribbons are awesome!!

 

If you want to contribute, funds are sent to us and made out to the OU Foundation PANDAS REsearch Fund and you can put my name at the bottom of the check or credit card/ I am grateful for whatever help we can get as we are overrun with work and testing.

 

I hope that your daughter improves. I know these are trying times for families dealing with PANDAS. We are doing what we can. Please let me know if there is anything that we can do to help you.

madeleine

 

Madeleine W. Cunningham, Ph.D.

 

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Yippppeeeeeee!!!!

I have also been thinking that if local fund-raising walks could be done, we could use the ribbons there as well and proceeds could go to her research!! Yayyyy!!! So excited about this!! Now, to get the things ordered! Ahhh... really busy week this week, but I will really try to make this happen for us!! :~))

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Great job Denise! What I always wanted to do was to have everyone send 50 bucks to a trustworthy person. Once all has been collected in a certain time frame...we send it down. There are 1500 fan of Pepsi Refresh...if they sent 50 bucks in..plus people here and on other sites....we could easily raise well over 50K.

 

Anyone interested? I'll put out an extra 50 bucks for her...she is our only hope for answers right now.

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P. Mom - my husband has made that exact suggestion on the facebook page some time ago! I think it's a great idea - and eventhough I don't hold the pursestrings - I'm certain that we'd be in!!

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I just ordered 1000 green PANDAS Awareness Ribbon Silly bands... it was Christine's idea... they will be used to raise awareness and fund research for this disease. ♥

 

It will take 3-5 weeks for them to make them and then they will ship them to me for orders. I will probably also create an informational card to be tucked inside each packet that kids (and adults) can hand out with them. I'm very excited about this project and raising funds for research to help our children!!

 

I need to ask you guys a question. I do not intend to make any profit off these ribbons... all funds go to support research for this syndrome/disorder... whatever we are calling it these days. I realize many of us are strapped financially... what price would you folks pay for a pack of 10 (with 10 info cards included in the packs)?

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Also... was thinking I would do something similar to Dr. B's card, where he has "know the signs" on the back... I need to check with him for permission about that.

 

I also want input from you other PANDAS parents... what do we want to see on this card? Please remember that THIS card will likely be given out to other kids, so I want to be sensitive to our PANDAS children's feelings, yet information to others. I plan to list them something like... "Symptoms may include... " to sort of allow an "out" for some of the more embarrassing ones, yet also have them posted for those who may know children with the condition - so they can get the help they need.

 

Please give me your input on what you would like included... Thanks - you're the best!!!! :wub:

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Sorry for all the posts... last one today, I think ...

 

Still working on the other items (t-shirts, magnets, buttons, bumper stickers, etc.) that will have the actual image on them - probably through Cafe Press and people can order what they want of those. The ribbons always have to be ordered in bulk for best pricing, which I want, for research fund-raising reasons.

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Denise,

 

Been on the Lyme board a lot lately but just saw this.... Great work! I bet the docs offices would put some order forms in their offices and possibly announcements through their email patient listings. It's a lot of work that you've already accomplished. WhewwwHooooo is right. Must feel good to be making some progress :)

 

darlene

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You GO Darlene... thanks for the input!! I just emailed our Ped office about that! ;)

 

Denise,

 

You guys didn't have any Lyme issues, did you? Working on some articles.

 

If you have any order forms, I'm sure someone (or myself) would be willing to make copies and put

in Pandas doc offices (we'll see Dr. B 3/6)

 

Keep rockin :D

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Actually, I don't yet know about Lyme... waiting for the test results of her IGeneX. Her blood work and spinal tap were all negative for Lyme, but we'll see what the IGeneX shows.

 

hehehe... we see Dr. B next week - Feb 23-24... and I was thinking about how I would go about getting him/them on board with this and really wishing I would have some with me in time to leave there!! I'll see what I can do about that... the only problem is that we have to order a minimum of 1000 of them, so it's not cheap. :( I'll see what I can do to make up an order form for people to order them from me! I'm a little distracted with all her doc appts, labs, homebound education, etc these days. Glad you suggested that - thanks!!!

 

Joan... we're in Virginia.

 

OU Foundation is Oklahoma University Foundation. It is where Dr. Madeline Cunningham works. Here is the link for online donations for her research: https://www.oufoundation.org/onlinegiving/OUDevGiving.aspx?pgid=devmain IMPORTANT: She is not listed on the menu; so, it is very important, in the comment section, to put PANDAS Research #50835. Thank you!

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