Hi.
How is everyone?
I am doing GREAT!
Having health issues, but that is always going to be so.
ALWAYS.
I've started a Tay-Sachs support group, that helps with children and families of children who have Tay-Sachs or even SANDHOFF disease.
the support is on YouTube.
WE ARE RAISING AWARENESS OF Tay-Sachs and Sandhoff disease because we want to help find THE CURE for the disorder.
Its ALWAYS FATAL.
Both forms Tay-Sachs are ALWAYS FATAL.
Sandhoff disease is a severe case of Tay-Sachs which is ALWAYS fatal in itself.
So, if Tay-Sachs disease is ALWAYS fatal, than think of how bad Sandhoff disease is.
WOW!!!!!!!!!!!!!!!!!
I couldn't imagine having a child with Tay-Sachs.
Well, just to let u know, that if u have a YouTube account u can join my group.
If u DO NOT have a YouTube account and u know of a family of a child, are in a family with a child, or EVEN HAVE A CHILD with the disorder, than PLEASE GET A YouTube account.
We will give u all the support we can give u.
THANK YOU!!!!!!!!!!
Much love and respect Peter Johann
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My life, and what happens to me in a daily basis. VERY unorganized, but I'll work on that in the future.
Posts
Welcome!!!!!!!!
AHH.
Its nice to have people to check out my blog.
This will contain what I do, ALMOST EVERYDAY.
I will be posting how I feel, my things that I did, what I thought while I was doing, and other stuff.
It will be tuns of fun.
Well, I hope you enjoy the blog, and If you do, PLEASE E-Mail.
pjfoster1@windstream.net
I don't mind.
But please DO NOT add any MEAN COMMENTS.
If something isn't working, or you think I could use improvment, well, Fine.
I ACTUALLY WANT YOU TO TELL me.
BUT IF YOU ARE JUST HERE TO SAY, something stupid, and uncalled for, than please keep it to yourself.
Thank you!
I don't wanna be mean, but I just don't want mean comments on my blog.
Well, once again, I hope you enjoy my blog, and if so, feel free to E-Mail me at the E-Mail adress above.
Thank you.
God bless you, and may he give you the strength you need to carrey on throughout the day.
Its nice to have people to check out my blog.
This will contain what I do, ALMOST EVERYDAY.
I will be posting how I feel, my things that I did, what I thought while I was doing, and other stuff.
It will be tuns of fun.
Well, I hope you enjoy the blog, and If you do, PLEASE E-Mail.
pjfoster1@windstream.net
I don't mind.
But please DO NOT add any MEAN COMMENTS.
If something isn't working, or you think I could use improvment, well, Fine.
I ACTUALLY WANT YOU TO TELL me.
BUT IF YOU ARE JUST HERE TO SAY, something stupid, and uncalled for, than please keep it to yourself.
Thank you!
I don't wanna be mean, but I just don't want mean comments on my blog.
Well, once again, I hope you enjoy my blog, and if so, feel free to E-Mail me at the E-Mail adress above.
Thank you.
God bless you, and may he give you the strength you need to carrey on throughout the day.
2 comments:
Hi Peter, This is Kim from Nat'l Tay-Sachs & Allied Diseases Association, Inc. (NTSAD). We exchanged a few emails a while back when you first learned about Tay-Sachs and Sandhoff. Thank you for helping raise awareness of these heartbreaking diseases.
I hope you are well!
Kim
Just trying to leave you a comment on here but it's teribly clunky to try to communicat through this blog. Stuff to fill in anyway.
Have you seen Napoleon Dynamite then? It's one of my favourite 'fun' films!
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