Update on PANDAS Resource Network

[laurenjohnsonsmom]

The PANDAS Resource Network was a collaborative vision of Dr. Bouboulis and I that started with a simple conversation just a few short months ago and has recently turned into a reality.

 

Dr. Bouboulis’ desire is to create a nationally recognized community of physicians coming together through the medical advisory board with the mission to educate other physicians of all specialties about PANDAS. He believes in raising awareness in both the mental health and medical field is the important first step of awareness so that one day families will have the help they need to diagnose and treat PANDAS right in their own backyard. My involvement and interest was a “community approach” of bringing doctors and families together within one organization.

We knew that Lauren’s pending media exposure due to her success with IVIG would reach millions around the world and we wanted a place for new PANDAS families to go to find professional, easy to navigate, accurate information.

 

The website you see today is a website we created in less than 6 business days! It’s far from a “finished product” and much credit and appreciation goes out to a small group of PANDAS parents who really “stepped up” and helped provide material and support in this mission to launch this website, most of them belonging to this forum. A special “thank you” goes out to Buster, Ellen, LLM, Meg’s Mom, T.Mom, mom md, IowaDawn, KeithandElizabeth, SFmom, charlottemom and wornoutmom. (I know there is some I’m forgetting, I am sorry).

 

We could not have done this without you. I am personally so grateful to everyone on this forum as I truly believe that the parents here providing knowledge and support was/is as important in our journey than every physician we have seen to date. I know new parents will continue to come here find the same guidance, support and acceptance, just as I did.

 

We have added some exciting changes and have more coming soon, including...

 

• We now have a member sign up form that includes an option to be included in a registry for researches to pull from for upcoming research studies. Together as this registry grows we will be a strong united voice.

 

• We have many new physicians joining the medical advisory board fields from numerous specialties including, psychology, neurology, Lyme disease specialists, etc, including Dr. James Leckman from Yale University and Dr. Pamela Varady, psychologist who will be adding exciting information to the coping area of the website.

 

• We have dozens of parents who have volunteered to start local support groups, all over the country. This is now available on the website. We are already connecting new parents who inquire through the website to these wonderful parents willing to help.

 

• We have a wonderful, well know team of psychologists, and authors from California who will be adding valuable information to the “coping” section of the website. (One of which is a PANDAS parent).

 

• We have updated the Events/News section with links to good information including Dr. Leckman's newest papers, Gary Haber's Pandas kids website and upcoming seminars where PANDAS will be represented. PANDAS newspaper and media coverage, etc..

 

Rome wasn’t built in a day and this website is far from our vision of what it’s going to be in the future. We have many other exciting plans. Please understand that most of the website, mainframe construction was donated by Tandem Blue Multimedia Partners as a generous gift (they have a family member with PANDAS) but the start-up business expenses and the continuous growth of this foundation is being financed solely by me.

We will not be updating the website often, as it is not cost effective. But as soon as I can, we will be adding networking links, including Latitudes/ACN, so others can find the support that so many of us value through this forum..

 

We welcome comments, suggestions or willingness to help this cause from all of you. I believe everything grows organically and this will grow and flourish into something wonderful, with time. Please feel free to contact me at info@pandasresourcenetwork.org

 

With my warmest heartfelt appreciation,

 

Lynn

 

www.pandasresourcenetwork.org

 

Educate, Communicate, Cure

[CandKRich]

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Edited August 12, 2013 by CandKRich

[chodnett]

Thanks Lynn

 

Love the Web site. I send everyone there

 

Will do whatever it takes.

 

So glad Lauren is back at school!

 

Cathleen

[memom]

Hi Lynn,

 

Love the website. I especially appreciate that other physicians can access it to get good information and help in treating Pandas. I immediately called the psychiatrist that first uttered the word Pandas to us about 1.5 years ago and left a message on her machine about the website. She does not know how to treat Pandas and since my daughters case, has been interested in learning more (I am the only parent in her caseload that had pursued aggressive Pandas treatment, I have been sharing our journey with her so she can help others). I can totally see the additions others on this website have contributed. I can hear their voices in the words I see on the screen. Well done.

 

Ellie

memom

[monarchcat]

The site looks great! So much has happened to push knowledge and understanding of PANDAS forward in just the past few months. I am amazed and so grateful to those who are working so hard. Thank you.

[WornOutDad]

Thank you for your dedication and hard work.