More News
Welcome to Issue 37

The July forum on McLeod syndrome and related blood issues.Thank you for reading this latest issue of NA News. Here you will learn why you don't want to miss our popular and informative VPS13 forums, held every other month. To give you a hint, this issue includes a detailed report on the 27 September forum, our third, which provided an update on an important NA brain research study. You'll also read about upcoming fundraising efforts, additional research updates, patient news, and helpful articles written for and by patients and advocates. We also introduce a new feature called "Carer Corner." For the latest updates from the Advocacy, don't forget to follow our international and USA Facebook pages. They are frequently updated with fresh news.

LikeLike (1) | Facebook Twitter LinkedIn
BREAKING NEWS - Upcoming Forum 29 November

 

To keep the VPS13 conversation going in pandemic times, Drs. Kevin Peikert and Adrian Danek announce a fourth online forum to be held on November 29, 2021. This forum will focus on patient registries, natural history studies, and patient-driven registries for rare diseases.

Read More »
LikeLike (0) | Facebook Twitter LinkedIn
In Memoriam

In Memoriam - reports on the sad loss of NA patientsWe are saddened to report the loss of three members of the NA community; Vivian Rodriguez, Kristi Ringo Curtis and Elba Nidia Figueros Nieves.

Read More »
LikeLike (0) | Facebook Twitter LinkedIn
Financial Respite Help for Neuroacanthocytosis Caregivers in the US

National Organization for Rare DisordersSusan Wagner writes with information for caregivers. As the holidays quickly approach the desire to take time to prepare and enjoy them with family and friend’s looms. For caregivers that time may seem elusive. The National Organization for Rare Disorders (NORD) has a program to help you.

Read More »
LikeLike (0) | Facebook Twitter LinkedIn
Looking Foward to 2022

Creative commons image with thanks to 401kcalculator.orgThe patients, trustees, researchers/consultants who are recipients of funds are hugely grateful for your support, financial and emotional, of our charity – Advocacy for Neuroacanthocytosis Patients. Without your help and generosity, we would not have been able to make the strides we have in understanding this group of ultra rare diseases. We have been able to fund work on genetic mutations, improve the Western Blot test for chorein and grow the VPS 13A database. The Advocacy supported the virtual Barcelona Symposium and continues to provide vital information to patients and families globally. The Glenn Irvine Prize will be awarded again in 2022. Please join us to champion the cause for these diseases; your assistance is invaluable! Gifts may be made through the donate button on the website or see other options.

LikeLike (1) | Facebook Twitter LinkedIn
Unlatch More Match

Copyright Ben Zvan Photography - https://www.flickr.com/photos/ben-zvan-photography/Neuroacanthocytosis Advocacy USA (NA-USA) was pleased with its successful “Unlatch the Match” fundraiser last year, and is set to do it again. Gifts to NA-USA will be matched, dollar for dollar, up to $25,000. The new campaign, called "Unlatch More Match", will allow the continuance of the Neuropathology of Neuroacanthocytosis project at the Icahn School of Medicine at Mount Sinai. This project examines brain tissue of persons who had VPS13A or McLeod syndrome. Ideally, this study will result in significant progress attracting interest of the National Institutes of Health. To donate, use the “DONATE” button in the upper right-hand corner of our website. You may also send donations to Neuroacanthocytosis Advocacy USA, Inc. at 2285 Harlock Road, Melbourne, FL 32934.

LikeLike (1) | Facebook Twitter LinkedIn
Addressing Sleep Issues - A Patient's View

https://cnx.org/contents/t2sgkCQ-@8/Organs-and-Structures-of-the-Respiratory-SystemDo you have a difficult time with sleep? McLeod Syndrome patient Bob Metzger writes of his positive experience using a Continuous Positive Airway Pressure (CPAP) machine.

Read More »
LikeLike (0) | Facebook Twitter LinkedIn
RESEARCH UPDATE - NA news from around the World

Research UpdateDr. Adrian Danek & Gabriel Miltenberger provide an up-to-the-minute update on developments in NA research. Dr. Ruth Walker provides an update on the Neuropathology of NA project. Dr. Teresa Zoladek & Dr. Joanna Kaminska edit a journal on 'Yeast Models and Molecular Mechanisms of Neurodegenerative Diseases'.

Read More »
LikeLike (0) | Facebook Twitter LinkedIn
Drew Smith & BostonLax

Drew SmithRead about Drew Smith who has appeared on BostonLax, a news and entertainment lacrosse website.

LikeLike (2) | Facebook Twitter LinkedIn
Online VPS13 Forums

Online forums provide a way forward to share important information on research updates and on all things NA across the globe.

Read More »
LikeLike (0) | Facebook Twitter LinkedIn
In this issue
TOP STORY
Welcome to Issue 37
BREAKING NEWS - Upcoming Forum 29 November
In Memoriam
Financial Respite Help for Neuroacanthocytosis Caregivers in the US
Looking Foward to 2022
Unlatch More Match
Addressing Sleep Issues - A Patient's View
RESEARCH UPDATE - NA news from around the World
Drew Smith & BostonLax
Online VPS13 Forums
Useful links
Issue archiveSend to a friendView print versionVisit our website