Fall 2021
SAVE THE DATE
Gala Rescheduled
While we were excited to celebrate the progress we’ve made with you, in person, at our 2021 Gala, we've had to make the difficult decision, once again, to prioritize the health of our community and postpone our event.

 NEW DATE:
April 24th, 2022

It will be worth the wait!!
Don't Forget About Your 2021 Tax Deduction
You can still get your 2021 tax deduction by making your 1x or recurring donation here
Thank you.
We would like to send our sincerest thanks to all of our generous donors, sponsors, and volunteers who keep Neuromuscular Disease Foundation (NDF) running so that we can continue to provide world-class research, studies, grants, wellness services, patient resources, scientific symposia, fundraising events, and so much more to the global neuromuscular disease community. 

The loss of Gala fundraising for two consecutive years has left us in need of donor support now more than ever. We want to thank all of you who have increased your financial support to keep us going. Thank you!
The 2020 Annual Report is OUT!
The accomplishments are numerous!
Covid-19 did not slow down the work that NDF has been doing on behalf of the patient community and donors.

If you have not already received your copy of our report in the mail, you can download the 2020 Annual Report now.
NDF In The News
We are so close.
NDF's 24 month plan to human dosing led by Dr. Angela Lek at Yale University, and Richard Horgan, CEO of Cure Rare Disease in collaboration with Charles River Labs to expedite a parallel path to an IND and subsequent clinical trial isn't just big news for us. Several publications have been sharing our ambitious goal.

In addition, a parent and member of our GNEM community from the U.S. was spotlighted in a U.K. based publication discussing her experiences as a parent to multiple children with a rare disease.

Click on the logos below to read each article.
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Become a NDF Corporate Sponsor


NDF’s Corporate Partnership Program is an opportunity to gain tremendous visibility and demonstrate your company's commitment to charitable causes. Becoming an NDF Corporate Partner also comes with many benefits.

Learn more here.
PATIENT SUPPORT
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Last Clinic of the year!

Patients only: We have a few open spots for patients at NDF's GNEM-Specific Clinic at
UC Irvine, December 5, 2021

Last year, NDF's Board approved a new initiative allowing GNEM patients better access to healthcare by sponsoring a muti-disciplinary GNEM-specific clinic.

Every other month, diagnosed GNEM patients are offered FREE visits with several specialists, who are experts in the field of neuromuscular disease.


To book an appointment at our sponsored clinics, AT NO COST TO YOU, please contact: 714-456-2332 option 4
Trouble Sleeping?
Our Emotional Wellness Director, Carol Gelbard, LCSW, recognizes that sleep challenges are common among people affected by GNEM. Please check out this webinar about Cognitive Behavioral Therapy for Sleep Disturbances. Although this webinar does not specifically address how to manage the pain and the discomfort associated with a muscle wasting disease, it can useful to incorporate some of the practices described to help improve sleep habits. Recommendations to help develop better, more effective sleep routines include apps such as Insomnia Coach and Night Owl as well as the use of blue light glasses. Sleep Specialist Dr. Viriginia Runko recommends Uvex Skyper blue light glasses to help reduce the blue lights given off by digital screens.  
CARE PARTNERS
QUICK LINKS
Spotlight
GNEM Patient and Certified Patient Advocate, Mona, speaks about modifications recently completed making her house a true home.

To read about all about Mona's home and see the reveal, click here
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Thank you to our generous corporate partners!
To learn more about this program, click here
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