The need for more

[LNN]

I've chosen not to respond to the recent thread about what Pandas is or isn't, can or can't provoke in terms of behaviors. But one thing became very clear from that thread - the intense frustration and pain that every family feels as a result of this illness and the controversy/stigma/lack of progress over the past 2 decades.

 

No matter how much time goes by since joining this community, there has always been unanimous agreement on the need for More...

More awareness

More research

More compassion/courage/acceptance/support from local practitioners

More consensus on treatment protocols

More insurance coverage

More ERP therapists

More answers

 

In the past few years, some very brave families have shared their stories with various media outlets, some have worked behind the scenes with researchers or existing non-profits, some have created/joined non-profits specifically for Pandas. It seems we each have things we're good at, things we're able to contribute. Whether it's sending a PM of support to someone who's really struggling, sharing a personal story with the media or organizing a national march on Washington, we all have a responsibility to help our kids and those who come after ours to make the path easier. We can - and should - all play a part, regardless of our financial situations. We all have gifts to share.

 

I just came across this organization that seems to have the right idea about cutting to the chase:

http://fastercures.org/

 

If your frustrations have been stirred up, please consider supporting one of the Pandas non-profits, the IOCDF or ACN (which is also a non-profit) with either a financial donation or some volunteer time or some constructive ideas on how you'd like to see things evolve, or just your continued support for this forum. Pay it forward. We all need to act.

[MomWithOCDSon]

Thanks, LLM. And a big "Amen" to that!

[filinha1]

Great suggestion. Paying it forward in time, money or both for more research is often the only control we have when it comes to this illness.

[Missmom]

Although it has been a long time since I worked and I am a little rusty, my background is in media marketing. I am particularly good at creating slogans, jingles, logos, etc... If anyone knows of a non-profit that would be in need of these types of services feel free to pm me. Like I said I am very rusty but am willing to offer ideas or suggestions.

[LNN]

Although it has been a long time since I worked and I am a little rusty, my background is in media marketing. I am particularly good at creating slogans, jingles, logos, etc... If anyone knows of a non-profit that would be in need of these types of services feel free to pm me. Like I said I am very rusty but am willing to offer ideas or suggestions.

You can contact

PandasResourceNetwork http://www.pandasresourcenetwork.org/

or

PandasNetwork http://pandasnetwork.org/

 

to see if they can use your help. I know most smaller non-profits can really use help with social media campaigns and organizing campaigns for Crowdwise or Kickstarter.

[Hayley]

Great post LLM. I have professional experience in fundraising and organizing and have felt, since my daughter was diagnosed, so anxious to see the energy from this forum channeled into the organized action we all need and want so much. I hope this isn't against forum rules, but I am compelled to take this opportunity to give one particular organization a little plug (given all they've done for me and especially since Miss Mom asked for recommendations of groups that could use help!). I have actually been doing some volunteer work with PANDAS Network (www.pandasnetwork.org) and have truly been so impressed by their work in every way.

 

This endorsement of PANDAS Network is in no way meant to slight any other organization/individual out there... I know there are others doing great work and I deeply appreciate all efforts on behalf of our kids. I'm just sharing what I know of this one very worthy organization.

 

From what I can gather, PANDAS Network is the most long-established PANDAS/PANS nonprofit organization we have as a community with strong visibility and a great track record and well positioned to be a launchpad for a bigger movement. As most people on this forum, I found www.pandasnetwork.org early on in my research and benefitted consistently from a ton of information they provide. The fact that the group's name comes up so consistently on this boards shows how well utilized it is as a resource.

 

For those who don't know, PANDAS Network is a 501c3 nonprofit that was started by a parent, Diana Pohlman, who, like all of us, just wanted to help find answers for her kids. While it continues to be run exclusively by volunteers it is backed by a very impressive scientific board, has big players (Swedo and Latimer) on it's Board of Directors and is a part of the NIMH partnership program. Among other projects, they are in the process of completing a national survey to document PANDAS cases; they were involved in a private PANDAS meeting at Stanford just last month (and plan to release more info on that when they can); and have a newsletter coming out shortly. PANDASnetwork.org is a go-to organization not only for parents, but also for members of the media and others who want information. When they respond it is always with input from members of the scientific advisory board so there is no doubt that the information is fact-based and credible. They are doing a ton of work, but are limited by the fact that they currently do not have the resources to operate as a staffed organization. All of their achievements , all the resources on their website, all the time and energy they devote to helping families...everything has been done by volunteers who squeeze in this work around other jobs and family commitments including managing their own PANDAS kids. It's amazing what they have gotten done under these circumstances and incredible to think about what they could do with adequate resources.

 

PANDAS Network recently did some strategic planning and developed a business plan laying out programmatic goals (research, education, family supports, etc.). The plan also lays out strategy for building infrastructure (e.g., staffing up and, to that end, fundraising) acknowledging that this is absolutely critical to realizing the programmatic goals.

 

 

I think that as an organization run by parents, and recognizing how much all of our families have been through, PANDAS Network.org has operated with a sensitivity, trying to always give to this community and not ask aggressively for anything in return. However, they ARE a nonprofit and if they are to achieve their potential as an organization, they really do need financial (and other) support. If you have used their resources and/or value their role, I encourage you to think about ways you might contribute whether it is a small (or large ) financial contribution (and remember many employers will match your personal gift to a nonprofit), organizing a little fundraiser in your community (restaurants, gyms, schools often have things set up where you can easily arrange a charity night where some percentage of proceeds go to a nonprofit), asking friends or family to make donations in lieu of birthday or holiday gifs..... There are lots of ways to contribute even if the demands of this disorder make it difficult for you to write a check yourself. And if anyone is in the DC area and wants to join forces to do some fundraising/awareness building for PANDAS Network, please feel free to PM me. A friend and I have been tossing around some ideas and we hope do put something together soon....

 

And to so many of you who are already giving time, energy, money, ideas, etc. to help our kids as a group...THANK YOU!

[PowPow]

Hayley,

I want to help fundraise in the DC area!

Diana is one of my Guardian Angels

Pandas network.org is absolutely top-notch and run by completely self-less group of parents. Lets help get them on track!

[Hayley]

Thanks, Pow Pow! I sent you a PM.

[Hrosenkrantz]

POwpow, I think your inbox is full....

[PowPow]

Just cleared it out!

[thereishope]

.

Edited September 29, 2019 by Vickie

[norcalmom]

Maybe a KickStarter video - for establishing a wider reach for funding?

[Hayley]

That's a great idea, norcalmom. I don't know much about how it's run though. Don't you set up a platform and then kickstarter is a vehicle for getting funding for some kind of media production? I may be misunderstanding the format, but if that's how it works, I don't know if it's viable though at this point since just getting the core projects funded is the priority. I feel strongly that if our community could come together and build the resources of PANDAS Network-- through small gifts, grassroots efforts, etc. -- the actions of the organization would, by design, raise visibility and ultimately position them for more fundraising. A PSA type thing could come down the line, but first there needs to be some donor base supporting general operations. I may be misunderstanding how kickstarter works, however. Or maybe you are talking more generally about using this for awareness of PANDAS overall which definitely has potential.

Edited June 9, 2013 by Hayley

[EmilyK]

A few of us are looking at setting up a RI chapter of PANDAS Resource Network. And I'm grateful that my work and boss continue to ask me for help raising awareness for the schools.