Comments on: Dwarfism Awareness Week -

By: Zully

Zully — Tue, 22 Jun 2010 23:26:59 +0000

Everything agree. Just a coment
There is 3 formal investigations to find a pharmaceutical treatment for the people with Achondroplasia (not a cure) started when the afected gene was discovered.
Japan, Univeristy of Kyoto
Spain, Complutense Univesity
Israel, Prochon Lab
As far I know, tests are now in mices, and as I understand, they grewth (legs and arms), I am not a doctor, I understand what is the principle of the pharmaceutical proposal, and look very understanble for me. I read all the medical reports availables on line and I know, research takes time, but still a hope, I have a baby girl afected with Achondroplasia, and Hope this will help. Regards!

By: Grafton

Grafton — Wed, 06 Jan 2010 07:27:04 +0000

‘Autism Speaks’ isn’t really looking for a cure — the research they fund (when they were actually giving grants instead of simply collecting people’s money to pay their own board. Which, I note, has no autistic people on it) is about developing a prenatal test for autism so that people like me can be aborted.

(I didn’t, until recently, know this could be done to ‘prevent’ dwarfism, and I am horrified.)

By: The Exciting News! | Knoah's (ARC) Achondroplasia Resource Center

The Exciting News! | Knoah's (ARC) Achondroplasia Resource Center — Fri, 06 Nov 2009 15:03:33 +0000

[...] the last two years, I have done Dwarfism Awareness on Knoah’s ARC and respectively, What is [...]

By: Signe

Signe — Tue, 25 Nov 2008 03:18:57 +0000

such good information, Tonya. Mostly, I like your perspective, maturity and wisdom in approaching dwarfism. It’s just a different slice of life and one not readily understood. Thank you for bringing more understanding to it and children affected by it.

By: Tonya Sweat

Tonya Sweat — Sun, 23 Nov 2008 13:53:51 +0000

Jennifer- I emailed you your logo, but it came back to me. Do you have another email address? Email at jannob980006@yahoo.com.

By: Wool's mom

Wool's mom — Sun, 23 Nov 2008 08:34:38 +0000

Ya~~
Your opinions is all good.
People with dwarfism baby has thinkings often like yours.
but These is difficult to explain its.

Sometimes little people have to turn the other cheek living in social.

So , How do we help to our child?
help? encourage to the back ? shut out the problems ?

By: Wool's mom

Wool's mom — Sun, 23 Nov 2008 08:34:38 +0000

Ya~~
Your opinions is all good.
People with dwarfism baby has thinkings often like yours.
but These is difficult to explain its.

Sometimes little people have to turn the other cheek living in social.

So , How do we help to our child?
help? encourage to the back ? shut out the problems ?

By: Greene Family

Greene Family — Sun, 23 Nov 2008 02:15:21 +0000

Great post!! Thank you for all that you do in raising awareness of dwarfism and for bringing so many parents of little ones with different types of dwarfism together!

By: Tiffany

Tiffany — Sun, 23 Nov 2008 02:08:50 +0000

IT amazes me that doctors know so little as well. The only reason they knew what Sawyer had was because I had Achondroplasia. I can’t imagine being one of the mothers that has to wait for all the tests to be processed before they are diagnosed!

By: Mandy and Bill

Mandy and Bill — Sun, 23 Nov 2008 01:31:49 +0000

I agree with everyone. What a GREAT POST! You are so right. Educating yourself does make a difference. Most of the time you will know more than your child’s pediatrician.
There are many parents that are so happy that you started a blog. Where else would they get such great information. Keep on keeping on.
Hugs!!!