Neuroacanthocytosis (NA) Community

Meet, discuss & support other patients or families living with Neuroacanthocytosis (NA). Contribute to topics, or just share what's on your mind

gingerirvine
moderator

NA meeting May 2016 Michigan USA

Dear Friend,

Are you affected by a neuroacanthocytosis syndrome (chorea-acanthocytosis, McLeod syndrome) - either as a patient, family member, friend, or caregiver?

The Advocacy for Neuroacanthocytosis Patients is hoping to organize a gathering of those affected by neuroacanthocytosis (NA) in May 2016 in Ann Arbor, MI, USA. As this is such a rare condition and we have not attempted such a meeting before, we would like to find out how many people might potentially attend such a meeting.

The purpose of this meeting would be two-fold:
1) 1) To meet others affected by NA, including their family and carers, for support and information

2) 2) To discuss the future of the Advocacy for Neuroacanthocytosis Patients. We are a small, web-based charity registered in the UK and the US, and are looking for volunteers who might be interested in taking over some of the organizational aspects of the group. This could include managing the website, being involved in finances, e.g. administration of grants, requesting proposals for grants, managing marketing and PR, translation services, being a “Patient Advocate” and promoting fundraising events If you have some energy and expertise to contribute to advance awareness, education, and support for people affected by NA, we hope that you would be interested in attending such a meeting. If you cannot attend, but are still interested in helping, we would love to hear from you – this could be done from anywhere in the world.

Please let us know if you would be interested in attending such a meeting. If you interested, how many people would attend?
If you are not, but might be interested in helping with the Advocacy, please let us know,

with warmest regards,

Ginger Irvine, Advocacy for Neuroacanthocytosis Patients
Adrian Danek, MD
Ruth Walker, MD, PhD

www.naadvocacy.org

(Apologies for any duplicate mailings, or if you feel that you should not be on this mailing list. If you do not wish to hear from us again please let us know.)

I would go but it would be too expensive for me to go to America. If you held 1 in England I would go to that 1

Same here, we can't afford a trip to the USA but would attend one in the UK

I will try to attend

gingerirvine
moderator

Hope you are able to join us; do be in contact! Thanks.

G&A

Could you post more info about the meeting please.