Running a nonprofit is not for the faint of heart. It requires drive, vision, extra doses of passion, resourcefulness, and impeccable communication skills.

How The NDF Maintains Transparency with Patients & Donors- Cure GNE Myopathy - Neuromuscular DiseaseIt is important for donors contributing funds to an organization’s cause to be kept informed at all times of its operations and the progress toward defined goals. This has been a priority for The Neuromuscular Disease Foundation (NDF), a non-profit organization that was founded to support patients and families with the rare disease GNE Myopathy (GNEM). As the #1 fundraiser for research to end GNEM worldwide, NDF places immense value in maintaining transparency and communicating its progress clearly with that community and throughout the general community. Below are 5 important tools that NDF is using to promote transparency….

  1.  Representation on our Board of Directors. The NDF recently determined that in order to maintain a constant connection and healthy information flow between its leadership and the GNEM patients whom it supports, it was necessary to include GNEM patients on its Board of Directors. The NDF invited longtime volunteer and GNEM patient Tara Voogel to become a board member. By doing this, NDF is confident that patients’ perspectives will be a part of every board meeting and organizational taken decision as a result. If Tara Voogel isn’t available for a board meeting, GNEM patient Amy Curran will be invited to attend as an alternate with full voting rights , thus ensuring the presence of a patient in every meeting. This ensures that updates reach the patient community promptly . We also welcomed Shawn Arianpour, a former member of the NDF Young Ambassadors to our Board of Directors. This also gives the new generation of board members a voice in meetings, and a vote in decisions that shape NDF future.
  2.  With its ongoing use of guidelines provided by the experts, such as the ratings set by Guidestar, NDF has received Guidestar’s Platinum Seal of Transparency, that indicates that NDF shares clear and important information with the public about its goals, strategies, capabilities, achievements and progress indicators that highlight the difference the Foundation makes in the world”. This rating also signifies that NDF’s “potential donors can find in-depth financial information about our organization as they consider a gift that supports our mission”.
  3.  Share, share, share! In today’s era of technology, we have unlimited resources through which to keep our patients, donors and the public informed of the advances and progress our organization is continually making toward our goals! Think: social media posts, online webinars, e-blasts, online forums and groups, and more! We really enjoy using every channel available to us, not only to truly connect with our community members, but also to keep the flow of information moving, so that they can always stay in-the-know! Thanks to social media, donors no longer have to wait to read about financials, etc. in online databases or in the press. We can deliver updates to them in real time!
  4.  Regular virtual events are a great way to keep our community up-to-date! The NDF recently announced its upcoming webinar, “Seeing Clearly: The State of NDF”. Our organization has been progressing full steam ahead toward our long-held goal of developing a treatment that will end GNE Myopathy. Along the way, we’ve also welcomed Geoffrey M. Gee, Esq., our newly appointed Executive Director! With all of the important news to impart to our generous donors and wonderful patient community, we decided to host a webinar. Our international community will be able to “meet” our Executive Director; our researchers and scientific advisors can provide updates on the many impactful milestones that we’ve reached in such a short timeframe, and an online meeting or webinar further facilitates total transparency by enabling a Question & Answer segment, where patients or donors can chime in with their questions, and receive direct answers from NDF leadership instantly. Welcome to the age of information!

Using these tools has been tremendously helpful in maintaining transparency and strengthening the connection between NDF’s donors and leadership, and in reaching our ultimate shared goal… to end GNEM!