Hear the latest from the NA Advocacy in the US

Greetings from Susan Wagner of NA-USA. With autumn 2020 in full swing, and with all the challenges the year has posed, I hope you have had some unexpected positive experiences which has made this a memorable year other than just COVID-19 related.

 

NA USA on FacebookRethinking and readjusting, the how, where and when to vacation/holidays, has hopefully tapped into your creative side. Enjoyment of the simpler things in life; puzzles, reading, cooking, the outdoors, has been calming and productive at my end. NA-USA members continue to work on the logistics and organization of NA-USA.

 

With the guidance of Ginger Irvine from the NA Advocacy, along with Joy Willard-Williford’s wealth of non-profit and technical expertise, both our NA-USA Facebook page and our temporary NA-USA web page tab on the NA Advocacy site have been launched.

 

Candi Michaux DiMarzio from VirginiaWe are pleased to introduce the newest member to our NA-USA board, Candi Michaux DiMarzio from Virginia.

 

Bob Metzger is in the process of notifying NORD (the National Organization of Rare Disease) to include NA-USA. To learn more about NORD; I attended the virtual NORD Workshop “Living Rare, Living Stronger” in July. This workshop was my first experience with the NORD organization, and my first virtual workshop. Navigating virtually from one workshop session to another, over the course of two days was easy. I chose both patient focused workshops and scientific workshops presented by doctors and researchers.

 

Obviously, the emphasis was on “rare” diseases and not “ultra-rare”, as our neuroacanthocytosis (NA) diseases classification falls into, yet the workshop information was helpful as there are many similarities between research processes, clinical trials and the unique patient and care giver struggles between “rare” diseases and “ultra-rare”.I found the sickle cell workshop NORD logomost interesting from a historical presentation from its past, present and future therapy perspective. Specifics on COVID-19 coping tools were presented with a resounding theme to reach out to others.

 

When the Barcelona Symposium is finalised we look forward introducing ourselves further.

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