Wednesday, January 30, 2013

The Acondroplasia - Achondroplasia blog: first year online

One year

On January 2012, I launched this blog as part of a collaboration with Growing Stronger, a non profit US organization managed by Amer and Munira Haider, parents devoted to improve the health care of children with achondroplasia by funding research. When we started to talk we agreed about the kind of articles I would be publishing. The idea was to give a different picture of the scientific progress in the therapeutic field.

You see, there is a number of outstanding sources of information in the internet, where the reader can find answers for the very common questions regarding the clinical aspects and the clinical care for achondroplasia. An interested reader will also easily find where to ask for help when there is need for advice for a matter of social inclusion, protection, opportunities, etc. For instance, just pay a visit to the Little People of America (English) and Fundación Alpe (Spanish) websites. It is likely there you will find answers for almost any topic you might have to ask regarding achondroplasia.

However, when it comes to picture the research for specific therapies for achondroplasia, the answers are not so easy to find. Going to Pubmed or Scholar Google, excellent tools to retrieve scientific articles about achondroplasia, will certainly give you lots of studies. But how to connect them in a way to make sense? For the average reader, parents looking for news, the science language may turn to be hard to translate in something meaningful. What is the perspective for a treatment, after all?

So, the goal of the blog has been to try to provide another approach for achondroplasia, a bit different from those excellent sources of clinical and social information available online. Instead, the purpose was to translate the hardcore jargon of the scientific papers in a more real life language for the non-initiated reader. And to give some insight to aspects that could have been overlooked by the mainstream of the research, going to the information without prejudice, but with due care about their sources. Information provided in the articles is referenced and where there is a personal thought the text is clear on it.

Since its launch, on January 17th, the blog received 13000 visits (reached today!) from readers of 92 countries. With the main purpose of sharing information about the pharmacological research for achondroplasia, during 2012 we have made a long promenade across the several potential therapy strategies published or disclosed. Some of them are currently being explored by researchers, others are still only theory. And, since the challenge is not only about performing a drug experiment in the lab, but also to make it reach the drugstore, we have also been reviewing many challenges to beat in order to make a treatment for achondroplasia available.

We can't forget those friends that have been gracefully and generously collaborating with this initiative and I am very grateful for all help Maria Cristina Terceros has been offering by translating most of the articles to Spanish. This truly helped the blog to be more accessible to many Spanish speakers around the world. 

I hope this initiative, the blog, has been showing to be useful to the reader by giving a distinct perspective for the treatment of achondroplasia. It is its only purpose.


  1. as a father of a 1 yo achondroplasic baby I am totally grateful for your wonderful blog, a real mind opening perspective on the achievements of recent resarches. I'm always waiting for new posts! Thank you so much!

  2. I have a 4 month old son with Achondroplasia. I always eagerly look for your posts on the research. Thanks a lot for your efforts in explaining the research in a way that is understandable to us who are not familiar with most of the scientific terminology related to the research.