There are many ways for people to help us reach our goals and fulfill our mission. Philanthropy isn’t JUST about giving money; it’s also about giving of your time and expertise.

We are often seeking help and professional expertise at our events. CPAs, doctors, designers, counselors, entrepreneurs, networkers, bloggers, event planners, fundraisers, community activists, SEOs, webmasters and social media gurus are always a good fit for us. We are grateful for people of all walks of life who can join us. GNE Myopathy patients and their family members are especially welcome as volunteers!

If you are interested in joining our team as a volunteer, please contact us.

What is the difference between a Board Member and a Volunteer?

While board members volunteer their time and expertise without pay, they are voted in by the existing Board of Directors and are bound by fiduciary responsibility which is taken very seriously. They are monitored by the IRS and the State Attorney General as well as by the public in the form of watchdog groups. The job of a good CEO is to keep the Board from making mistakes that can expose them and the organization. Board Members are duty-bound to serve only the mission of the organization over and above any self-interest or by personal loyalties to one another.

Join a Committee

You are welcome to join an existing committee. Our committees range from fundraising events, scientific advisories, genetic carrier screenings, patient-centric symposia and advocacy work. Committee membership is for one year. If, at the end of one year, you would like to stay on, great! If not, you will not be pressured to stay, and we will remain eternally grateful for your service.

If you do not know what you want to do, but want to help, please reach out to us and tell us about yourself and how you would be willing to contribute.

Nominate Yourself for a Position on the Board of Directors

Because nonprofit board membership carries financial, legal, and fiduciary responsibilities, our bylaws require that our board members first serve on a committee in order to become eligible to apply for a Director position. Board membership requires a 2 year term, and each seat embodies certain areas of expertise and knowledge to best represent a cross-section of the greater communities and constituents we represent.

If you are interested in submitting your name for consideration for a position on our Board of Directors during our next election cycle, please complete and submit this short survey telling us a little bit about yourself and your interest in our organization or contact us for more information.

Become a Certified Patient Advocate

Our Certified Patient Advocates are a group of dedicated GNE Myopathy patients and, in some cases, family members residing in many regions of the world. These advocates are committed to helping NDF in our efforts to bring programs to patients and families in their respective countries.

For more information about becoming a Certified Patient Advocate, please contact us.

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Each year we have a limited number of paid positions available for high school and college students. We can also work with schools to offer academic credit whenever possible. If you are interested in applying, please send us your resume and cover letter, telling us a little about yourself and why you are interested in NDF. Be sure to place “Intern” in the subject line of your email.

Host an Event

Sometimes project-based volunteerism, rather than an extended commitment, is the way to go. Whether you would like to host a fundraiser or help spread awareness about GNE Myopathy, we would love to speak with you about how you can help. Please contact us and explain how you would like to contribute.

Sponsor an Event

Sometimes giving via your business is a better way to go, and it ensures that your business gets recognized as an entity with a conscience and a good sense of corporate responsibility. There are many ways to reward your business with exposure that guarantees recognition from our constituents, many of whom are — or could become — your customers.

Please contact us about your interest and we will pair you with the sponsorship opportunity that is right for you and your business goals.

Call your Doctor

Everyone knows at least one doctor or health care worker. We would love for you to download the detailed and comprehensive explanation of GNE Myopathy and give it to your doctor the next time you see them.

Physicians have seldom heard about this rare disease. Contact us and we will provide you with some tools to help you discuss issues relating to GNE Myopathy with your Internist, GP, OB-GYN or neurologist should you have questions.

Rare Neurological Disease Special Report: Overview of GNE Myopathy