MRI machine to arrive in my hometown by December 2012!!!

Jenna and I have been happily supporting the fundraising of a new state of the art MRI machine that is slated to arrive in our hometown by the end of 2012.  We have been privileged to share our story of Acromegaly in a variety of outlets such as:  radiothon; Community Wide Meetings; Publication; and now a video and we are asked to continue being involved.   We are doing what we can to contribute to this very important iniative to get this new state of the art MRI machine in our local hospital and to make it even better, we are creating lots of awareness for ACROMEGALY.

Below is the link to the video...Enjoy:
http://www.youtube.com/watch?v=ebq2OVoptsM&feature=plcp


Julie

"Rare diseases are rare, but rare disease patients are numerous" Orphanet

I was so pleased to stumbled across this press release today.  I only shared the first paragraph.  After clicking a few times, I was pleased to see "Acromegaly" as a documented Rare Disease in their international link.  I went ahead and gave my name to ensure that our "Canadian launch of Orphanet" has Acromegaly on their radar.  I will keep a close watch for an email response and will keep you posted.

P.s.  I'm still benefiting from my 60mg of Sando every 4 weeks.  I go for my IGF-1 bloodwork next week and will discuss the results during my December follow-up appointment with my Endo.

All the best,
Julie




Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

http://www.orpha.net/consor/cgi-bin/index.php?lng=EN

 OTTAWA - The Honourable Leona Aglukkaq, Minister of Health, today announced two initiatives aimed at bringing new hope to Canadians with rare diseases: the Harper Government will create a new approach for the authorization of "orphan drugs" and announced the Canadian launch of Orphanet - a comprehensive database of information and services for rare diseases.
http://www.hc-sc.gc.ca/ahc-asc/media/nr-cp/_2012/2012-147-eng.php