GSSD and new company

2014 has brought a lot change so far. I am eager to see how the year unfolds. We are executing on a planned strategy and have high hopes. Wish us luck!

Below are updates I would like to share.

Dr. Horton has received funding and does not need GrowingStronger's support right now.  Dr. Wilcox has moved from LA and we are no longer supporting his lab. As a result we have some $$ left over from the initial fund. This is a nice problem to have. Dr. Mackenzie and Dr. Horton supported GrowingStronger in creating a grant that will invite other researchers to submit proposals. With the help of many we created the GSSD (Grant for the Study of Skeletal Dysplasia). See the website for details. With help from Dr. Morrys and others we got a number of submissions. Right now (May 29) we have invited a selected list to submit full proposals. We hope to announce grantees at the LPA board meeting. 

I hope that this initial GSSD process shows promise to the LP community and others jump-in to drive and support the fund. 

I have made a major shift in my career. After 13 years in semiconductors I have jumped into healthcare to focus on patient safety. 200,000 to 400,000 people die each year due to preventable medical errors. 1M preventable errors are reported each year. Up to $30B is wasted due to preventable errors. The nation has made patient safety and do no harm a major initiative. My brother who is surgeon at Johns Hopkins, he colleague and industry luminary Dr. Peter Pronovost and I have cofounded Doctella.com to help patients become a second pair of eyes and ears to help prevent harm.  Please visit www.doctella.com and like us on facebook.

*edited from original post

NIH grant for Dr. Horton

We are very excited to mention that Dr. Horton has got an NIH grant that will help further science related to helping children with dwarfism and others.

See the grant at: 

https://www.collectiveip.com/grants/NIH:8621082

We helped fund this project to get off the ground with an initial grant. See link below. 

http://www.growingstronger.org/greg-lunstrums-blog.html

tool for office hours

I found a very nice tool that allows setting up office hours. I will push for getting online office hours with leading doctors

http://ohours.org/rockhealth

Amer

Updated Resources page

Updated resources page with docs from Alpe in English.

resources direct link: https://drive.google.com/folderview?id=0B6gFgDDx1oM2QVd3RXJOQ0NHME0&usp=sharing. 

Growing Stronger at MAB

We are confirmed to attend the LPA MAB meeting in Washington DC on Sunday June 30 at 4pm EDT.

We will be presenting a donation from Growing Stronger to LPA's MAB and asking MAB to create a grant process for us. I will let update the blog to let you know the results after our meeting.

New fund raising page

New fund raising page.

We are excited to report we are moving to a new online fundraising tool that allows members to create their own fundraising page without us having to get involved. This is very exciting.

We are retiring our old page (still works but not preferred)
http://www.firstgiving.com/fundraiser/growingstronger/onlinedonations

and we are moving to:
https://mycharityofchoice.com/charity/profile/129#.UcmRafmG130

We hope to see more people raise funds for improving the quality of medical care for little people

2013 Grants Update

2013 Grants Update

We are pleased to announce that we completed the first full year of support of Dr. Horton's lab and Dr. Jyoti's work. Dr. Jyoti has received a grant based on her research and continues her important research without support from Growing Stronger. We are pleased to mention that we are now providing partial support to a Dr. Greg Lunstrum, research in Dr. Horton's lab. You can see progress from Dr. Horton's lab on their blog on the website (Learn -> Blog -> Dr. Jyoti's blog)

We have some changes to report with Dr. Wilcox's lab. Dr. Pavel has left Cedars in the beginning of April 2013. He is no longer supported by Growing Stronger. We are communicating with Dr. Pavel to evaluate how we can continue to support his important FGFR3 research.  We are working with Dr. Wilcox to finalize our first year support and in the process of evaluating our continued support.

updates April 25

We completed the 3rd episode of LP Doc Talk and uploaded to the website.

Dr. Horton's new lab  has published 2 blogs back in April - Great !!

Dr. Ain has confirmed he is available on April 23, 2pm PDT to host LP Doc talk. We have 14 questions for him to answer. 

Registry will be gone if we dont help

The International Skeletal Dysplasia Registry (ISDR*) may disappear because the funding from NIH will most likely be discontinued by the government.  

We will lose a valuable resource if we cannot help fund the registry at $250K/year till the government can support the registry. 

*http://isdr.csmc.edu/

Thanks form Shriners Hospital

Thanks to Shriners Hospital and Dr Horton who created the Achon Growth charts with his research. You can see his latest work at www.growingstronger.org blogs

Regards,

Amer Haider

cell: 408-234-0520

Sent from mobile device. Please pardon typos and brevity.

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Please visit the site www.growingstronger.org

Happy New Year

Created online petition to preserve NIH funding

http://www.petition2congress.com/8427/preserve-nih-funding-orphan-conditions/

Ad in LPA.

Nice letter from Cedars about our support

LP Doc Talk is off to a good start.

We have multiple registrants from across the world including NZ, UK, Canada, Pakistan. 

We look forward to a very productive call with Dr. Wilcox on Oct 30. 

Regards

Amer

LPA NYC press Conf

latest news

RBC Capital believes that Phase II PEG-PAL data and Phase I Achondroplasia safety data could be announced next week, 

http://wallstcheatsheet.com/stocks/biomarin-retains-outperform-rating-and-4-stock-analyses-sparking-chatter.html/

Q&A session

I am excited to start the online Q&A sessions. We have Dr. Wilcox signed up for Oct 30 at 4pm. I will send out details. We have Dr. Ain schedule for early 2012. I am trying to get more doctors to sign-up.

Just completed brochure and PR for LPA Dwarfism Awareness month event. I am flying to NYC this weekend for the event. 

Now that summer is over we will start ramping up activities and motivate more parents to raise $

Getting ready for the Grand Fando on Sept 16

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