NYTT från Maj-09!!!

Senaste forskningsrapporten #18 hittar du på

http://www.ifopa.org/index.php?option=com_content&view=article&id=84&Itemid=42&lang=en

“Better treatments for FOP are not just a dream –
they are now likely,
and a cure is a distinct possibility.” 
(page 64)

------------------------------------------------------------------

23 april 2006 underbara nyheter FOP-genen hittad

FOP = ACVR1(c.617G>A; R206H)

Här nedan kan du läsa ett utdrag ur forsknings rapporten ang upptäckten av FOP genen (det handlar om Hugo)

§ What will happen next in FOP research?

Ironically, we recently received this exact question from Hugo Fahlberg, a seven-year old child with FOP from Eskilstuna, Sweden. Hugo’s mother, Marie wrote the following email:

"Dear Fred:

Hugo is eating dinner and planning for his future – his hockey and soccer future – and he knows that you must find the appropriate gene first before he can play real hockey - and until then, he must play at home carefully with his friends on the grass. But, today, he has a question that I was unable to answer, so I will let him write it to you by himself, and here it is: When you find the gene, what are you going to do with it?

Signed, Hugo."

Well, Hugo, that is a wonderful question, and it could not have come at a better time! We actually just found the FOP gene! The first thing we should all do is have a big party and celebrate!! Now, we finally know the cause of FOP, and that is a reason to celebrate because it gives us the first real clue about how to fix it.

Even before the party, we did some homework and we wrote a description of the FOP gene discovery for other scientists and doctors. We think that many doctors and scientists around the world will be interested to know what the FOP gene is, and perhaps do research on it as well. Some scientists may even want to use that information to help some people make more bone, like those who have broken bones from playing soccer and other sports, or some children who are born without enough bone in certain parts of their body, for example.

We are now trying to make a mouse that has real FOP, and we have already started working on that. Mouse genes are a lot like people genes, so discovering the FOP gene gives us a big clue about how to make an FOP mouse. If we can make a mouse with real FOP, we’ll be able to test new medicines in the mouse before we test them in you. Now that we know the FOP gene, we have a better idea about the types of medicines that might stop FOP so that kids with FOP can play hockey and soccer and not form extra bone if they get bumped. We don’t have those medicines yet, but we already started working on them.

The discovery of the FOP gene is a very important discovery that will help us solve the puzzle of FOP. Thanks for asking such a great question!

Love to you and to your whole family,

Dr. Kaplan.