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New Membership Levels and Benefits

April 10th, 2019

We made some changes to our membership program in 2019, with the introduction of three levels of membership (including a much-requested family membership).

In this post, we will cover why we are making these changes, how and when they will be implemented, and the impact to your membership.

Why are we making changes?

Narcolepsy Network exists to support, connect, and advocate for people with narcolepsy everywhere. We bring members to Capitol Hill to meet with lawmakers, advocate for the community’s needs at the Food and Drug Administration (FDA) and National Institutes of Health (NIH), publish updates on research and treatments, fund support groups around the country, offer a wealth of information on our website, train youth with narcolepsy to become advocates, and run the only annual narcolepsy conference that connects hundreds of patients, doctors, and researchers together under one roof.

We are making changes to ensure the long-term stability and success of the network’s prime mission: Advocating for all people with narcolepsy. We have worked very hard on these new levels, to balance the needs of the organization with the impact on you, our valued members. None of what we do is possible without your financial support. Your contribution is absolutely critical to preserving the network’s ability to independently advocate for our membership, and to advocate for the narcolepsy community at large.

Why do we have member dues?

The purpose of dues in a membership-based organization is to cover the operating costs of the organization. Narcolepsy Network is powered by our community—by you.

The network (like all patient-focused rare disease nonprofits) does receive a substantial amount of grants from our corporate partners. These grants are earmarked for specific programs and events, and cannot be used to pay salaries and operational costs. We rely on you, our members, to keep the lights on and the organization running. Your support is so important, we literally could not do this without you.

How effective is our current membership program?

The reality is that our existing membership model does not cover our operational costs (it currently meets 50% of our needs). We are introducing new membership levels with the goal of creating a sustainable model for the future. There can be no growth in programs and services without covering our operational costs first.

What is changing?

In the new membership structure, you will have the choice of supporting Narcolepsy Network’s work at one of four different levels:

Supporter Level – $50 per year

  • Raise Awareness: When you join Narcolepsy Network at this level, you are choosing to advocate for people with narcolepsy all across the United States. We are the leading organization in the world dedicated to supporting people with narcolepsy and their loved ones.   Join us and speak for the 1 in 2,000 with this disorder.
  • Support Groups: We provide funding for support groups in 19 states, enabling over 700 people with narcolepsy to connect with each other in person. As a Supporter, you will help to foster these in-person connections.
  • Additional Benefits: Access to Patient Trial/Studies, Voting Rights, Volunteer Opportunities (such as becoming a Support Group Leader), Ability to Receive a Conference Scholarship, Members–Only Print Newsletter, and Access to Printed Educational Materials.

Advocate Level – $100 per year

  • Conference: Our Annual Conference is the only event in the US that brings together hundreds of people with narcolepsy and their loved ones and world-renowned researchers and physicians. For many, it is a life-changing experience. As an Advocate, you will receive the early bird discount for the conference registration.
  • Youth Ambassadors (YAs): Each year we train promising young people to become advocates for people with narcolepsy around the world. When you join Narcolepsy Network at this level, you will help this program grow and its future leaders.
  • Additional Benefits: All Supporter Level benefits, plus Early Event Registration, and a Conference Discount.

Family Level – $150 per year

  • Family Conference Rates: At this level, not only will you receive the early bird conference discount, but students will receive a 50% discount and children under 6 are free. You may add up to five immediate family members to this level.
  • Additional Benefits: All Supporter Level and Advocate Levels benefits.

Leader Level – $250 per year

  • Giving Back: Narcolepsy Network has touched many lives, and hopefully, yours as well. If you would like to ensure that other people with narcolepsy continue to benefit from our work, this membership level is made for you.
  • Additional Benefits: Invitations for Special VIP Events and all Supporter Level, Advocate Level, and Family Level benefits.

How will these changes affect me?

Our new membership levels became effective at 12:01 AM EST on January 1, 2019.

Supporters will continue to receive many of the same benefits as they currently do. When your membership is due for renewal, it will do so at $50.

Advocates will receive access to early event registration and the conference discount. Our Youth Ambassador class will be required to join at the Advocate level, and the current program fee will be dropped.

Families will benefit from this new option (especially those with multiple children), especially when they attend our conference. Every member of the family will receive a vote in elections.

The Leader level is an exciting new opportunity, for those who have made it to a place where they are ready and able to contribute at a higher level. We are asking those of you who have benefited from the network’s national advocacy, awareness efforts, and programs to step up and power the next 32 years of Narcolepsy Network.

Thank you,

Sharon O’Shaughnessy, Louise O’Connell, and Keith Harper

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Date Created: April 10th, 2019
Last Updated: May 27th, 2020