Author Topic: Newsletter 6  (Read 3069 times)

patpinchin

  • *****
  • Posts: 600
  • AL - extensive in skin. mouth + palatal nerves '04
Newsletter 6
« on: August 28, 2015, 06:50:45 pm »
A big thank-you to Miriam, Beth and all contributors for today's excellent newsletter.  Congratulations on the combination of the range of features and photos.

It is thanks to the newsletter that every patient can learn about the additional work of the NAC such the 7th Annual UK Amyloidosis Network meeting. Great evidence of the NAC's success in raising greater awareness of the disease amongst the medical profession. We must hope that the advances reported at local level will eventually spread nationwide to accelerate diagnosis and improve patient survival. For the first time, every patient and other recipients can be informed of the promising outcome of phase 1 of the clinical trial for Professor Sir Mark Pepys' new drug. Forum users already appreciate the value of this forum. By publicising its helpfulness, a growth in members will hopefully ensue.

 It is always encouraging for patients to read of successful outcomes of long and gruelling treatment regimes, such as Ross' SCT.  Mark (a seasoned writer for the newsletter), your dialogue approach in parts of your diagnosis journey gave a stark impact of the realities of your experience with which others wil identify.  Cycling seems to be overtaking running in popularity for fundraising. What an inspirational idea by the Arrowsmiths to devise a 100 mile route route passing through Dutch villages starting with each letter in the word Amyloidosis to photograph their signs!  How wonderful that fundraising efforts for the UCL Amyloidosis Research Fund continue. These are so vital to directly support our Doctors, Scientists and patients. As Mark so aptly put it, the NAC is most definitely "a bridge over troubled water".
Pat