The Global Foundation for Peroxisomal Disorders.

Just about the minute we got home from the hospital with Joel after his diagnosis, I was online, looking up information and support.  And so, very shortly, I was connected to an online support group, based on Yahoo.

Now, over two years later, I have some very good friends I met through the group site.  Mostly through the group site, I quickly learned more about Joel's disorder then most of our doctors knew.  And continued to learn.  In short, the group was an invaluable source of encouragement, support, and information.

Just recently this amazing group of people, spearheaded by those of us who excel in organization and "getting things done," has started a foundation and put up a beautiful website.   It's got official status as a charity, in order to receive donations.  We are hoping through the website that we will become better known and easier to access through search engines and word of mouth.

The mandate is to help and support parents, both emotionally, medically and financially.  And also to be a resource for doctors and professionals.  Like I said, I quickly learned more through the group knowledge of this disorder then most (if not all ;)  ) of our doctors knew.  We hope to share some of this group knowledge with medical professionals, some of whom have never heard of a PBD before.

I know the people on the board of directors.  They are amazing.  And I'd really like to support this group which has supported me so much through the past two years.  I too feel a great desire to help other parents dealing with a PBD. 

Of course, I  feel a bit limited right now in what I can do to help.  But one thing I can do, is ask you, my blog readers, to help.  Please take the time to check out our website.  You don't even have to donate, though of course, money is always good.  ;)

Seriously, though, since our website is just starting up, it hasn't gotten many "hits" and as my friend Shannon says, we are still in the "sandbox" of the search engine world.  Which means that you can type "Global Foundation for Peroxisomal Disorders" into your search engine, and I don't know how many pages down you'd have to go in order to actually see it.  This isn't very helpful to parents looking for online support.

So I'm going to put the link up here on my blog, once again.  And I'm going to ask you, if you think of it during the day when you are surfing around, reading the "news" stories, or playing on Facebook, if you could take the time to link there, and maybe even the time to try finding it in your search engine.  This costs you nothing but time, and if you are like me, you are likely wasting a few minutes on frivolous Internet stuff anyway (or maybe more than a "few" minutes), and it might really help a parent in the situation I was in two years ago, desperately searching for help and information for this terrible diagnosis you have suddenly been handed for your child.

So, I'm not too proud to beg.  Please, please, please?  Do it for me?  ;)

www.thegfpd.org

And see if you can find that picture of Joel I mentioned.  It's not on the home page, you have to look through the site to find it.  :)