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Autism One PANDAS think tank, looking for sponsors


LNN

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Autism One has invited several of the leading PANDAS doctors to speak at their conference this May. Doctors Swedo, Cunningham, Trifiletti, Latimer and Kovacevic will be presenting, along with some case histories told by parents. They are also trying to host a "think tank" for the doctors - a closed meeting, not a public presentation - where they can share ideas.

 

If any of you know of a company or donor that would be willing to contribute $500 or $1000 toward this effort, please let me know and I will connect them with the appropriate people at Autism One. Roughly $6,000 is needed to cover expenses for the think tank. This is not a plea to parents who are already tapped out from medical expenses! I just know sometimes getting the word out can lead to unexpected things to help a cause near and dear to our hearts. If anyone has contacts with a company or donor who might be willing to help, it would be greatly appreciated.

 

Someone recently asked me why Autism One is so supportive of PANDAS. I can't speak for the organization, but my impression is that a large number of parents whose kids are on the autism spectrum believe that their kids have several co-morbid issues that can and should be medically treated. They feel that an ASD label is too vague and causes doctors to dismiss the other medical issues as just something they have to live with as part of ASD. PANDAS makes a lot of sense to some of these parents. The Columbia mouse study found that the PANDAS mice developed asperger's-like symptoms. So PANDAS might be one of the missing puzzle pieces for some ASD kids.

 

I think Autism One wants to spread awareness about PANDAS so that like us, their members might be able to educate themselves and fight for treatments for their kids. (This is my take on it, anyway). The director of AO has interviewed Beth Maloney and Dr Kovacevic on VoiceAmerica Radio, and Drs Latimer and Trifiletti are scheduled for February interviews. She's helped me publish an article in the Autism File. And AO has reserved 5 conference presentation slots for PANDAS. For an organization that isn't about PANDAS, it's an incredible amount of support and advocacy.

 

As far as I know, the "summit" among the doctors is still being planned. The Autism One think tank is separate effort. But whether a summit happens before or after the AO May conference, more than one meeting is still a really great thing. So anything any of you can do to reach out to donors or sponsors would be greatly appreciated.

 

Laura Matheos

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Dut- good question...

 

so, would this be tax decuctible? would there be a receipt?

 

exactly what type of expenses does the money cover? doctor fees? airfare? meeting room? food?

 

where would the donation be directed? directly to autism one? how would it be directed for the pandas think tank?

 

possibly a one page write up, including some of what you said in the post, along with some more details (answers to above) could be done. We are tapped out right now, but I am thinking grandparents, and dh's company :D

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Hi- would this be counted as a donation to a charity so that anything that would be forthcoming from parents could be donor matched by employees and tax deductible?

 

Thanks...

It is my understanding that donations are tax deductible. I will double check and confirm.

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Teri from AutismOne told me it would be tax deductible. You can email her directly and tell her you want it ti go towards the pandas portion of the conference.

 

Her contact info...

Teri Arranga

tarranga@autismone.org

 

Hope this helps!

 

Lynn

 

 

Hi- would this be counted as a donation to a charity so that anything that would be forthcoming from parents could be donor matched by employees and tax deductible?

 

Thanks...

It is my understanding that donations are tax deductible. I will double check and confirm.

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Dut- good question...

 

so, would this be tax decuctible? would there be a receipt?

 

exactly what type of expenses does the money cover? doctor fees? airfare? meeting room? food?

 

where would the donation be directed? directly to autism one? how would it be directed for the pandas think tank?

 

possibly a one page write up, including some of what you said in the post, along with some more details (answers to above) could be done. We are tapped out right now, but I am thinking grandparents, and dh's company :D

 

I have forwarded all of these questions and will post answers asap. I am sure there will be a receipt. I committed to specifically spread the word about the think tank. But as how the check gets made payable to etc, these are things I've asked for clarification and ultimately I will put any donor in touch directly with a contact at AO, as some donors wish to be anonymous and some may want recognition as a sponsor.

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Someone recently asked me why Autism One is so supportive of PANDAS. I can't speak for the organization, but my impression is that a large number of parents whose kids are on the autism spectrum believe that their kids have several co-morbid issues that can and should be medically treated. They feel that an ASD label is too vague and causes doctors to dismiss the other medical issues as just something they have to live with as part of ASD. PANDAS makes a lot of sense to some of these parents. The Columbia mouse study found that the PANDAS mice developed asperger's-like symptoms. So PANDAS might be one of the missing puzzle pieces for some ASD kids.

 

I think Autism One wants to spread awareness about PANDAS so that like us, their members might be able to educate themselves and fight for treatments for their kids. (This is my take on it, anyway). The director of AO has interviewed Beth Maloney and Dr Kovacevic on VoiceAmerica Radio, and Drs Latimer and Trifiletti are scheduled for February interviews. She's helped me publish an article in the Autism File. And AO has reserved 5 conference presentation slots for PANDAS. For an organization that isn't about PANDAS, it's an incredible amount of support and advocacy.

 

That, but also, a ton of recent autism research that correlates autism with immune dysfunction. For those of you who may not know or remember, my 15 year old daughter is pretty severely affected w/ symptoms of autism. I was amazed when I came to this forum to hear lists of symptoms for PANDAS that so resemble autism characteristics...and I do think age of onset is the deciding factor in whether PANDAS kids are autistic or not. If onset is early enough, it interferes with development, causing developmental delay. (although, one could certainly argue in our case that it caused developmental stagnation).

 

I do so wish I had a big, fat check to contribute. My fantasies these days involve the lottery and a PANDAS treatment slush fund to help families get treatment for their children.

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This is from Autism One:

 

"Autism One is a 501©3 charity, so donations would be tax deductible. Yes, we can provide a receipt. Yes, some employers match it. We can provide an EIN.

 

This is for expenses related to PANDAS coverage such as participants' travel expenses and facility or other expenses incurred directly related to PANDAS coverage.

 

The check is written to Autism One, but please designate PANDAS in the memo line.

 

I am very excited about this think tank and impressed by the parental involvement in your community driving progress. Any help bringing accurate information to light is much appreciated as we move forward together to heal kids and help families."

 

 

I realize many families aren't in a position to contribute financially, including my own (unless we pick the same lotto numbers as peglem). But if you can spread the word, maybe we can make a greater impact than we think. I believe the only "restriction" that AO has is that it does not want to accept donations from companies that may have a perceived conflict of interest with the AO mission, such as a vaccine maker. If you can help in any way, please PM me and I'll put you in touch with the person coordinating at AO. I do not need to know the identity of any donor. Thanks for any help you can give!

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Autism One has invited several of the leading PANDAS doctors to speak at their conference this May. Doctors Swedo, Cunningham, Trifiletti, Latimer and Kovacevic will be presenting, along with some case histories told by parents. They are also trying to host a "think tank" for the doctors - a closed meeting, not a public presentation - where they can share ideas.

 

If any of you know of a company or donor that would be willing to contribute $500 or $1000 toward this effort, please let me know and I will connect them with the appropriate people at Autism One. Roughly $6,000 is needed to cover expenses for the think tank. This is not a plea to parents who are already tapped out from medical expenses! I just know sometimes getting the word out can lead to unexpected things to help a cause near and dear to our hearts. If anyone has contacts with a company or donor who might be willing to help, it would be greatly appreciated.

 

Someone recently asked me why Autism One is so supportive of PANDAS. I can't speak for the organization, but my impression is that a large number of parents whose kids are on the autism spectrum believe that their kids have several co-morbid issues that can and should be medically treated. They feel that an ASD label is too vague and causes doctors to dismiss the other medical issues as just something they have to live with as part of ASD. PANDAS makes a lot of sense to some of these parents. The Columbia mouse study found that the PANDAS mice developed asperger's-like symptoms. So PANDAS might be one of the missing puzzle pieces for some ASD kids.

 

I think Autism One wants to spread awareness about PANDAS so that like us, their members might be able to educate themselves and fight for treatments for their kids. (This is my take on it, anyway). The director of AO has interviewed Beth Maloney and Dr Kovacevic on VoiceAmerica Radio, and Drs Latimer and Trifiletti are scheduled for February interviews. She's helped me publish an article in the Autism File. And AO has reserved 5 conference presentation slots for PANDAS. For an organization that isn't about PANDAS, it's an incredible amount of support and advocacy.

 

As far as I know, the "summit" among the doctors is still being planned. The Autism One think tank is separate effort. But whether a summit happens before or after the AO May conference, more than one meeting is still a really great thing. So anything any of you can do to reach out to donors or sponsors would be greatly appreciated.

 

Laura Matheos

WOW. To me this is exciting stuff. Don't forget the power of numbers. If everyone who reads this PANDAS forum gave $10 or possibly $20, imagine what that could add up to...I'm just saying...but we can all look for larger donors too. I am fascinated by all of this information. My ds9 who is PANDAS has had issues since age 3 or 4. I cannot tell you how many times I thought he had Asperger's. At the most recent appointment with our developmental pediatrician, he told me he just doesn't see it. He is too social. But I'm telling you he has a lot if overlap here. We kept taking him to this developmental guy, we actually had him tested for autism before the BIG PANDAS flare. After the big flare this doctor says to me "Autism does not appear overnight". I have kept that comment with me ever since. But as we all know, PANDAS does happen overnight.

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I cannot tell you how many times I thought he had Asperger's. At the most recent appointment with our developmental pediatrician, he told me he just doesn't see it. He is too social. But I'm telling you he has a lot if overlap here. We kept taking him to this developmental guy, we actually had him tested for autism before the BIG PANDAS flare. After the big flare this doctor says to me "Autism does not appear overnight". I have kept that comment with me ever since. But as we all know, PANDAS does happen overnight.

 

Before I learned about PANDAS, I too googled Asperger's more than once, but it never fit. Eye contact, close relationships, snuggling, sarcasm - my son could do these things. But there was "something" about his social skills. When I read the mouse study, it was an AHA moment. Now my son's teacher complains that he's TOO social. He's making up for so much time and enjoying friendships like never before. Being able to get him prompt and correct medical treatment has made a world of difference, even if he remains "allergic" to strep.

 

You raise a good point. I'm sure AO would happily accept any donation, large or small.

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Hi Laura -

 

I´d like to make a donation to the "think tank", a unique opportunity in the effort to help our children, and I am sure many other parents would like to contribute too. Larger and smaller amounts -

 

Would it be possible to make a Facebook-Cause-page, during which the donations could be given ?

 

As far as I know these Facebook-Cause-pages gives the opportunity to pay via Paypal - so quick and easy, that it allmost doesn´t "hurt" (untill the end of the month :-) ).

 

If not possible, please contact/PM me -

 

Thank you for all your effort !

 

PANDAS_Denmark

 

Autism One has invited several of the leading PANDAS doctors to speak at their conference this May. Doctors Swedo, Cunningham, Trifiletti, Latimer and Kovacevic will be presenting, along with some case histories told by parents. They are also trying to host a "think tank" for the doctors - a closed meeting, not a public presentation - where they can share ideas.

 

If any of you know of a company or donor that would be willing to contribute $500 or $1000 toward this effort, please let me know and I will connect them with the appropriate people at Autism One. Roughly $6,000 is needed to cover expenses for the think tank. This is not a plea to parents who are already tapped out from medical expenses! I just know sometimes getting the word out can lead to unexpected things to help a cause near and dear to our hearts. If anyone has contacts with a company or donor who might be willing to help, it would be greatly appreciated.

 

Someone recently asked me why Autism One is so supportive of PANDAS. I can't speak for the organization, but my impression is that a large number of parents whose kids are on the autism spectrum believe that their kids have several co-morbid issues that can and should be medically treated. They feel that an ASD label is too vague and causes doctors to dismiss the other medical issues as just something they have to live with as part of ASD. PANDAS makes a lot of sense to some of these parents. The Columbia mouse study found that the PANDAS mice developed asperger's-like symptoms. So PANDAS might be one of the missing puzzle pieces for some ASD kids.

 

I think Autism One wants to spread awareness about PANDAS so that like us, their members might be able to educate themselves and fight for treatments for their kids. (This is my take on it, anyway). The director of AO has interviewed Beth Maloney and Dr Kovacevic on VoiceAmerica Radio, and Drs Latimer and Trifiletti are scheduled for February interviews. She's helped me publish an article in the Autism File. And AO has reserved 5 conference presentation slots for PANDAS. For an organization that isn't about PANDAS, it's an incredible amount of support and advocacy.

 

As far as I know, the "summit" among the doctors is still being planned. The Autism One think tank is separate effort. But whether a summit happens before or after the AO May conference, more than one meeting is still a really great thing. So anything any of you can do to reach out to donors or sponsors would be greatly appreciated.

 

Laura Matheos

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It would be amazing to get everyone in one room for a conference. Hopefully, a PANDAS parent rep would be present too. This would be a good way to try to get PANDAS into local media as well. I personally do not have funds or know of a company at the moment, but I will think on this a bit more. I guess if it comes to it, it wouldn't hurt to possibly to blind mailing/calling looking for sponsorship. It's also a tool just to get get PANDAS info to the general public.

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