Newsletter & Reports Archive

Home » News » Newsletter & Reports Archive

Newsletter & Reports Archivendf2022-03-04T06:55:42-08:00

Want the latest news on GNE Myopathy, community updates, and to see your donor dollars in action?

To stay up to date on our progress, click here sign up to receive our quarterly newsletter.

Follow us on Instagram

This error message is only visible to WordPress admins

Error: No feed with the ID 1 found.

Please go to the Instagram Feed settings page to create a feed.

Stay up to date on our progress

global-advocacy-alliance-founding-member-badge

CN_Encompass_030121_Version3_Takeaway_91-200×200

Los Angeles
269 S. Beverly Drive, Suite 1206
Beverly Hills, CA 90212
(310) 721-1605

NDF’s goal is to provide an accessible website to all. While we work to remove barriers that prevent persons with disabilities from accessing information made available on our website, we offer phone support in several languages. Please call 1-(310) 721-1605 or click here to request a call back.

The Neuromuscular Disease Foundation is a 501(c)(3) nonprofit organization
EIN: 06-1789643

Please be advised that content within the NDF website includes a compilation of material from differing sources. NDF does not provide medical advice nor is NDF a medical provider. This content is intended for informational purposes. Please contact your health care provider(s) for your specific healthcare needs. The NDF website contains links to external websites that are not in any way affiliated with NDF. NDF suggests that you review the terms of service and privacy policies of these websites before using them. Please note that NDF does not guarantee the accuracy, relevance, timeliness, or completeness of any information on these external websites.

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.

Necessary

Always Enabled

Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.

Cookie	Duration	Description
cookielawinfo-checbox-analytics	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checbox-functional	11 months	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checbox-others	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-necessary	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-performance	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
csrftoken	1 year	This cookie is associated with Django web development platform for python. Used to help protect the website against Cross-Site Request Forgery attacks
viewed_cookie_policy	11 months	The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.

Functional

Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.

Cookie	Duration	Description
bcookie	2 years	This cookie is set by LinkedIn. The purpose of the cookie is to enable LinkedIn functionalities on the page.
lang	session	This cookie is used to store the language preferences of a user to serve up content in that stored language the next time user visits the website.
lidc	1 day	This cookie is set by LinkedIn. Used for routing.
sp_landing	1 day	This cookie is set by Spotify. This cookie is used to implement audio content from Spotify on the website. It also helps in collecting information on user interaction with this audio content.
sp_t	1 year	This cookie is set by Spotify. This cookie is used to implement audio content from Spotify on the website. It also helps in collecting information on user interaction with this audio content.

Analytics

Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.

Cookie	Duration	Description
_ga	2 years	This cookie is set by Google Analytics. The cookie is used to calculate visitor, session, campaign data and keep track of site usage for the site's analytics report. The cookies store information anonymously and assign a randomly generated number to identify unique visitors.
_ga_07R2BSRHMW	2 years	This cookie is set by Google Analytics.
CONSENT	16 years 5 months	These cookies are set by embedded YouTube videos. They register anonymous statistical data on for example how many times the video is displayed and what settings are used for playback. No sensitive data is collected unless you log in to your google account, in that case your choices are linked with your account, for example if you click “like” on a video.
vuid	2 years	This cookie is set by Vimeo. This cookie is used by Vimeo to collect tracking information. It sets a unique ID to embed videos to the website.

Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.

Cookie	Duration	Description
__putma	20 years	This cookie is set by Prezi.com. It is used to target ads based on behavioral profiling and geographical location.
AnalyticsSyncHistory	1 month	No description
bscookie	2 years	This cookie is a browser ID cookie set by LinkedIn share buttons and ad tags.
fr	3 months	The cookie is set by Facebook. It is used to show relevant advertisements to users and measure and improve the advertisements. The cookie also tracks the behavior of the user across the web on sites that have Facebook pixel or Facebook social plugin.
IDE	1 year 24 days	This cookie is set by Google. It is used by Google DoubleClick and stores information about how the user uses the website and any other advertisement before visiting the website. This is used to present users with ads that are relevant to them according to the user profile.
li_gc	2 years	No description
oo	5 years 5 days	This cookie is set by AddThis. This cookie is used for targeted advertising. It helps in knowing about the users that visit their webpages.
test_cookie	15 minutes	This cookie is set by Google. It is used by Google DoubleClick to determine if the user's browser supports cookies.
UserMatchHistory	1 month	This cookie is set by Linkedin - Used to track visitors on multiple websites, in order to present relevant advertisement based on the visitor's preferences.
VISITOR_INFO1_LIVE	5 months 27 days	This cookie is set by Youtube. Used to track the information of the embedded YouTube videos on a website.
YSC	session	This cookies is set by Youtube and is used to track the views of embedded videos.
yt-remote-connected-devices	never	These cookies are set by embedded YouTube videos.
yt-remote-device-id	never	These cookies are set by embedded YouTube videos.
yt.innertube::nextId	never	These cookies are set by embedded YouTube videos.
yt.innertube::requests	never	These cookies are set by embedded YouTube videos.

Others

Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.

Cookie	Duration	Description
_ptref	1 day	No description available.
AnalyticsSyncHistory	1 month	No description
glassbox-session-id	30 minutes	This cookie is set by Prezi.com
li_gc	2 years	No description
loglevel	never	No description available.
UserMatchHistory	1 month	This cookie is set by Linkedin - Used to track visitors on multiple websites, in order to present relevant advertisement based on the visitor's preferences.