The Dutch DCAA patient assocation, especially our patient advocate Sanne, has been working closely with the research team in Perth and Dini, Dorinda and Carol to set up a support system for DCAA families in Australia. We realise there is heaps to be done. Our first step is to channel our communication with you through a newsletter, as we do in the Netherlands for the Dutch families. This newsletter will contain info about what is going on research wise, potential treatments, info about the team and events.
In this first volume you'll find: all there is to know about TRACK DCAA, an introduction of neurologist Daniel Clarke (at your service), info about the livestream of Alnylam's meeting with Dutch DCAA family members this weekend to introduce ALN-APP and discuss a trial and information about the webinar on August 10th about ALN-APP especially for the Aussie families.
On behalf of the entire team: we are thankful you are taking the time to read it. Being DCAA family members ourselves, we realise that a confrontation with the disease can be a burden and sometimes it is easier to ignore it. Given the fact that Alnylam is developing an RNA therapy that might influence DCAA, we are more hopeful than ever for our futures and hope you will be as well. If there ever was a time to stand up and do what we can do as family members to make a drug happen, it is now.
If you have any questions, please do not hesitate to contact Sanne (firstname.lastname@example.org) or Dini (email@example.com).