The New Normal: Phase II

A few weeks ago…I made a post called “Feedback Forum” to ask for feedback from you so that we could get a grasp of what you’ve enjoyed and gotten out of the blog and if there was anything that you would like to see more of. The point of the post was to hopefully get enough feedback that would help to mold a vision for “The New Normal” in the future, especially as we start the process of transforming this blog into an online resource for brain cancer patients and their caregivers that we’ll be calling “Out of the Grey”  (it was a need that I saw very early on in my own process with dealing with the disease). I’m pleased to announce that we have begun laying the groundwork of setting up a non-profit with a specific vision for the site/organization. I have two very ambitious goals for “Out of the Grey”, first that it would become the “Livestrong” for Brain Cancer (because the disease is really so unique and different than other forms of Cancer). Second, that it would be the very first link that pops up on “Google” and “Yahoo!” for when people look up brain tumors/Cancer so that they immediately can feel a sense of hope.

Amy was the one that came up with the title “The New Normal” and I was proud of her for choosing to view our situation that way right off the bat. I can’t think of anything better than having you’re numero uno choosing and committing to view a terrifying situation like ours through that lens. God bless you, Sweetheart, for seeing that so early on. With brain disease, especially, the word “normal” definitely changes meaning, immediately after diagnosis. The idea though is that the blog will itself will stay being called “The New Normal” and that the attitude and spirit of the blog will be the lens in which “Out of the Grey” will commit to. I remember when I first got home from the hospital, I kept wanting to wake up and have it all be a dream. Now when I wake up, it just feels normal, we’ve all adjusted to it and we’re living a much more joyful life as a result (that’s not to say…it isn’t hard…but it’s not like life wasn’t already hard before all this). The slogan “The New Normal” can be applied to any life changing event but it is our passion especially that newly diagnosed brain cancer patients and families know that it can be true for them as well because it’s still such a rare, complicated, and difficult disease to navigate through.

just threw this together in two seconds

The model of the site/organization would be similar to something like “Livestrong” or “stupidcancer.org” but again solely focusing on Brain Cancer. The tenants of the website would be “INFORMATION”; “COMMUNITY”; “MEDIA”, “EXPRESSION”; and”HOPE”. The basic philosophy in terms of creating content for the website is to take the approach of what’s called “crowd-sourcing”. In terms of “INFORMATION”, it should be an effective way to filter through all the misinformation out there and create a straight forward approach to sharing the latest accurate information about research, treatments, clinical trials, statistics etc. Under “INFORMATION” we would also have lifestyle tips (diet, exercise, supplements, and integrated medicine etc) as well as help for filing for things like disability, etc. Under “COMMUNITY” we would crowd-source all the information regarding medical specialists, support groups, cancer service centers around the country. You would just plug in your zip code and all those things would pop up immediately. There would also be a social media platform in which to engage with others in the community. Under “MEDIA”, we would have weekly to potentially daily podcasts as well as web video chats with various experts, survivors, etc. We would also try to feature a weekly survivor story presented through the power of video. The point of “EXPRESSION” would be to come up with ways to advocate for brain cancer research and for brain cancer patients and caregivers to express themselves through art: like writing (blogs), music, video etc. The other thing is that hopefully the community involved would work together to create awareness campaigns and branding etc so that we can make sure that the world knows all about Brain Cancer and that as a result the perception of the disease is changed forever. Finally, “HOPE”, which is what the whole purpose of the site/organization would be. “HOPE” would help setup funds for families in need (and a tax-write off for people helping them), a fund for brain cancer research, job help for patients/survivors etc if that’s needed plus and a merch store to help with awareness. The idea is not completely innovative but what I do hope is that it would be infused with the same spirit that Amy and I were able to communicate through the blog…I also want to build a platform for the site that would allow it to keep up and evolve with the ever changing Internet landscape.

At this point we’re still getting together the team and still developing the vision and what we would love and need at this point as well are intercessors and cheerleaders. We will eventually need volunteers but in the interim, as the vision for “The New Normal Phase II” ( again now called Out of the Grey) has now put out into void of the world wide web, we will make sure to update you, via the current “New Normal”, on it’s progress.

Much Love (and excited to share this with you),

A + A

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