LNN Posted March 14, 2010 Report Share Posted March 14, 2010 I started thinking about how different things are from a year ago when I joined this forum and I started writing down all the positives that have happened. When you put it all in one place, I think we as a community have accomplished quite a bit: * The website www.pandasnetwork.org is launched and gives parents a great collection of information as well as a way to connect with doctors and document their child’s story * The Cunningham study becomes publicized (within our community and among the expert doctors) and the study is able to capture a wider range of subjects and help a wider range of confused parents * An IVIG study is proposed with Telecris, and while it doesn’t receive funding, a dialogue between doctors is started * The Columbia mouse study is published * Saving Sammy is published and given wide media attention – people hear PANDAS on national TV * The non-profit PANDAS Foundation is founded and the Got Strep? Campaign launched * NBC and others cover a “mystery” presentation of a girl’s tic symptoms and hear about PANDAS again. Across three Today show episodes, the disease goes from being treated as “controversial” to “rare” to something that’s portrayed simply as an autoimmune disease . (Watch all three clips back to back and watch Nancy Snyderman’s tone change). * The Autism File publishes an article on PANDAS and the Autism One director dedicates three radio interviews to the disorder * Scientific American Mind publishes an article about PANDAS and quotes Dr Swedo as estimating that a quarter million kids diagnosed with OCD might actually have PANDAS * Members start the Pepsi Refresh campaign for PANDAS * A local NPR affiliate does a two day story on PANDAS and a family in Chicago * The non-profit Pandas Resource Network is founded * Through member networking, links from other web sites and word of mouth on other forums, membership on Latitudes likely grows (perhaps Chemar could say by how much?) * In May,the Autism One conference will provide 5 presentations on PANDAS and sponsor a think tank * In July, the IOCDF conference will provide 3 presentations on PANDAS * This summer, a separate think tank is in the works. And the network of doctors willing/able to treat our kids has grown - it's not large, but it's bigger than it was awhile ago... I'm sure I'm missing things, so by all means please let me know and I'll add to it. I know this disease has been around for a long time and that other great things have been accomplished. I was just trying to look at the past year and see what's different. What's missing is funded research (and treatment answers), but as a community we're doing some positive things to raise awareness and move things forward. It's easy to get depressed while in the middle of your own crisis. But I think collectively we're making a difference and I want to give newcomers hope that people are pushing for answers. And what's really the most important thing is that no one person is - or could possibly be - responsible for all of this. This is about everyone doing their part - large and small - to make things happen. Link to comment Share on other sites More sharing options...
Worried_Dad Posted March 14, 2010 Report Share Posted March 14, 2010 Awesome, uplifting post, Laura. Thanks, I needed that. Makes me feel optimistic that 2010 will be a turning-point year for PANDAS / PITAND!!! Link to comment Share on other sites More sharing options...
zazuk2010 Posted March 14, 2010 Report Share Posted March 14, 2010 Awesome, uplifting post, Laura. Thanks, I needed that. Makes me feel optimistic that 2010 will be a turning-point year for PANDAS / PITAND!!! DITTO! thanks for putting that all down. That really is amazing. When I talk about this forum people often think I am going online just to chit chat (or as my husband often says chick chat) with others who share our misery. I try to explain how different it is here and that while it is certainly a place to get emotional support (thank goodness) it is also without doubt a place to learn about what is working to help our children, what might work in the future and a place for people to create momentum to move PANDAS into a new era of discovery and cure! Your "list" is proof that the will of a strong community can really make things happen! It's inspiring Kari Link to comment Share on other sites More sharing options...
matis_mom Posted March 15, 2010 Report Share Posted March 15, 2010 The greatest accomplishment is the support provided for all the families in the forum I don't know where we would be without all the help we've found here! Isabel Link to comment Share on other sites More sharing options...
Fixit Posted March 15, 2010 Report Share Posted March 15, 2010 and i'll be the kiss up..Dr T joining us with his actual medical knowledge, theories, willingness to share, open mindedness knowing he knows so much but is able to realize we are all still learning and in that alone, makes us feel like(in our personal experiences) we are not crazy(that means something too) Link to comment Share on other sites More sharing options...
Pandas_chicago Posted March 15, 2010 Report Share Posted March 15, 2010 I started thinking about how different things are from a year ago when I joined this forum and I started writing down all the positives that have happened. When you put it all in one place, I think we as a community have accomplished quite a bit: * The website www.pandasnetwork.org is launched and gives parents a great collection of information as well as a way to connect with doctors and document their child’s story * The Cunningham study becomes publicized (within our community and among the expert doctors) and the study is able to capture a wider range of subjects and help a wider range of confused parents * An IVIG study is proposed with Telecris, and while it doesn’t receive funding, a dialogue between doctors is started * The Columbia mouse study is published * Saving Sammy is published and given wide media attention – people hear PANDAS on national TV * The non-profit PANDAS Foundation is founded and the Got Strep? Campaign launched * NBC and others cover a “mystery” presentation of a girl’s tic symptoms and hear about PANDAS again. Across three Today show episodes, the disease goes from being treated as “controversial” to “rare” to something that’s portrayed simply as an autoimmune disease . (Watch all three clips back to back and watch Nancy Snyderman’s tone change). * The Autism File publishes an article on PANDAS and the Autism One director dedicates three radio interviews to the disorder * Scientific American Mind publishes an article about PANDAS and quotes Dr Swedo as estimating that a quarter million kids diagnosed with OCD might actually have PANDAS * Members start the Pepsi Refresh campaign for PANDAS * A local NPR affiliate does a two day story on PANDAS and a family in Chicago * The non-profit Pandas Resource Network is founded * Through member networking, links from other web sites and word of mouth on other forums, membership on Latitudes likely grows (perhaps Chemar could say by how much?) * In May,the Autism One conference will provide 5 presentations on PANDAS and sponsor a think tank * In July, the IOCDF conference will provide 3 presentations on PANDAS * This summer, a separate think tank is in the works. And the network of doctors willing/able to treat our kids has grown - it's not large, but it's bigger than it was awhile ago... I'm sure I'm missing things, so by all means please let me know and I'll add to it. I know this disease has been around for a long time and that other great things have been accomplished. I was just trying to look at the past year and see what's different. What's missing is funded research (and treatment answers), but as a community we're doing some positive things to raise awareness and move things forward. It's easy to get depressed while in the middle of your own crisis. But I think collectively we're making a difference and I want to give newcomers hope that people are pushing for answers. And what's really the most important thing is that no one person is - or could possibly be - responsible for all of this. This is about everyone doing their part - large and small - to make things happen. Wow - what a great post! Link to comment Share on other sites More sharing options...
T_Mom Posted March 15, 2010 Report Share Posted March 15, 2010 Thank you! Link to comment Share on other sites More sharing options...
wornoutmom Posted March 15, 2010 Report Share Posted March 15, 2010 and i'll be the kiss up..Dr T joining us with his actual medical knowledge, theories, willingness to share, open mindednessknowing he knows so much but is able to realize we are all still learning and in that alone, makes us feel like(in our personal experiences) we are not crazy(that means something too) I will second this! His involvement adds legitimacy beyond words.... Link to comment Share on other sites More sharing options...
thereishope Posted March 15, 2010 Report Share Posted March 15, 2010 This isn't only PANDAS related, but the Senate did officially designate March as “National Autoimmune Diseases Awareness Month” this year. We must remember that we are part of the autoimmune community and in the future they may be able to help with achieving funding, educating people, etc. Senate Resolution 372 Designates March “National Autoimmune Diseases Awareness Month” http://www.newswise.com/articles/senate-re...awareness-month Link to comment Share on other sites More sharing options...
dee45 Posted March 15, 2010 Report Share Posted March 15, 2010 Thanks !!! Have a wonderful day to all the wonderful people who visit this site. Deanna Link to comment Share on other sites More sharing options...
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