great comment

I wanted to share a comment from facebook in response to BioMarin's drug. I hope future generations do not have to endure what most little people have to experience today in terms of medical treatments

Amer

This is really interesting and complicated for me to process. I'm a mom to a young child with Achondroplasia as well as a woman with Achondroplasia who just went through two very complicated surgeries on my cervical spine. While goi

ng through the process I couldn't help but hope that my son will NEVER have to go through some of the procedures I did. But the unknown...is even scarier. Such a hard decision but could be a really good thing in the end. I wish there was a way to test it out without using our children in the trial runs...but I guess that's impossible? Thanks for sharing!

Time is flying. It has been over a month since I update the blog. I will write more about the LPA national convention. We had a great time and learned a lot. For now let me share an update from BioMarin. Nothing spectacular but good progress in the right direction.

http://seekingalpha.com/article/772391-biomarin-pharmaceutical-s-ceo-discusses-q2-2012-results-earnings-call-transcript?page=6

http://seekingalpha.com/article/772391-biomarin-pharmaceutical-s-ceo-discusses-q2-2012-results-earnings-call-transcript?page=7

Regards
Amer

Got approvals from doctors to use quotes. Exciting stuff.


uploaded new ambassador program
http://www.growingstronger.org/become-an-ambassador.html

getting ready for LPA nationals.  I hope we signup a lot of ambassadors

Below is an update I recently shared with a donor.

1. We found Sugen SU10270 within Pfizer and got the structure. Dr Wilcox and Dr Horton are testing the compound

2. We have published the description of the target molecule we are looking for.  Please share the link below with your contacts. 

https://docs.google.com/document/d/1b2zzFbo7bhC_bPkV8Uj0YFfMITgq3S-5H6wunYS0dxg/edit

3. We had a gala with presentations from Dr. Horton, Dr. Wilcox and friends who have dwarfism

See videos at: http://www.growingstronger.org/videos-and-presentations.html

4. We are a sponsor at the LPA National this year in Dallas. We will have a booth and meet and greet right after the "Research Panel" led by the LPA MAB (medical advisory board)

5. We are building a Parent advocate board so parents can sign-up to help fund raise and support each other

6. We are going to try and start 2 new online medical support programs

 - Online radio talk show with a MAB expert

 - Recruit MAB members to sign-up on http://www.healthtap.com 

7. We have raised $180K/year. We are just $20K/year short of our goal of $200K/year for 3 years to support Dr. Horton and Dr. Wilcox

We had an exciting past couple weeks. 

We had our big gala. Videos are on the website. 

We got a relevant molecule based on the description in my previous blog post

We update the mission statement with inspiration from Vita Gagne. Thanks !

We submitted our pledge form to sponsor at LPA

We are getting ready for the LPA meeting in Dallas

UK group website is up http://www.growingstronger.org.uk

The document linked below describes the type of molecule achondroplasia (dwarfism) researchers are looking for. If you know anyone in the Pharma industry ask them send the link below to their scientists. Maybe some drug company has a similar molecule that our supported researchers can quickly test.

https://docs.google.com/document/d/1b2zzFbo7bhC_bPkV8Uj0YFfMITgq3S-5H6wunYS0dxg/edit

Recently learned about book Mendels Dwarf. Very interesting read.

http://us.penguingroup.com/static/rguides/us/mendels_dwarf.html