The voice of people with narcolepsy is the heart of Narcolepsy Network. Since we announced leadership changes in February, we are continuing to deliver on current programs and examine ways we can build upon how we serve you -our members, supporters, and partners. We are taking a look at where we are successful in supporting the community and where we can grow as a membership organization to expand our impact.

Our goal is to build an even healthier and more robust Narcolepsy Network this year and beyond. To do this we plan to:

Continue to deliver on core programs

We are committed to delivering the core programs that our members, partners, and supporters count on. This year, we will continue ongoing support, education, medical information, and advocacy programs for the narcolepsy community. For a refresher on those programs, please click here.  

As we do this, we are also strengthening the way we work and the tools we use, so as to better support a complex patient and family support organization that has grown significantly over the years. Narcolepsy Network will deliver our core programs more efficiently and more widely in 2021 and beyond.

Strengthen the Narcolepsy Network itself

The environment for patient support and advocacy in rare disease has shifted tremendously over the past ten years. We, the Board of Narcolepsy Network, are responding to this new environment by guiding the organization through this transition.

We’ll further refine the Board’s roles and responsibilities and take steps to foster greater resiliency for the Network, including strengthening its infrastructure, communications platforms, and governance. As importantly, we will encourage a community vision and a supportive spirit at all levels and roles within the organization.

Manage leadership transition efforts

Accomplishing the Board’s agenda will require staff leadership from an organizational development professional who has experience in managing rare-disease organizations as they grow. Fortunately, we have found and engaged just such a person.

Today, we’re delighted to announce that Amy Kant is joining Narcolepsy Network as our Transition Director. In addition to supporting the Board in the initiatives above, she will assist us in defining and identifying the staff leadership the organization needs in order to grow. Amy has been engaged in supporting organizational transitions for evolving rare disease organizations, including tenure as the Transition Director for the National Niemann-Pick Disease Foundation.

Amy will also supervise our valued and dedicated staff members, Christine Hackenbruck and Kristin Fisher, as they continue to deliver on the programs that matter most to our members and to the narcolepsy community at large. She will also be the point of contact for our professional network, partners, and supporters.

Amy comes to Narcolepsy Network with more than 25 years of non-profit management experience and a background in building organizations and enhancing the strength and capacity of rare-disease communities. Amy also has extensive experience in the healthcare industry, including work in senior care, disabilities, and research.

Listen to you and build our collective future 

We will also be reaching out by developing new ways to engage your feedback. These consultations and conversations will include those on community needs and educational opportunities, advocacy, clinical development, disability rights, health care access, and more. 

But we also understand that you may have immediate questions. We can’t guarantee we can fully answer these, at least now, but we’ve identified a primary point of contact for your concerns and queries. Through this transition period, Sharon O’Shaughnessy will serve as a community ambassador.  You can reach Sharon through this link.

One current program has a dedicated Board member: Carol Arnette is the point person for the Youth Ambassador program. 

You will receive periodic updates on the work ahead. We look forward to listening to you during this transition and to collectively building a healthy and robust Narcolepsy Network moving into the future.

Narcolepsy Network is committed to continuing to deliver programs that benefit our members, supporters, and partners. These include:

People with Narcolepsy and Family Support Groups

• Expanding our virtual Thursday groups to serve the expanding need in our community
• Continuing groups for parents of children with narcolepsy and our closed Facebook support group
• Continuing to sponsor group network affiliates by providing access to Meetup and Zoom

Awareness and Education

• Driving awareness of narcolepsy through programs like Suddenly Sleepy Saturday, Giving Tuesday, and World Narcolepsy Day
• Engaged communication via our newsletter and social media platforms
• Mini-Conferences and the Annual Conference in October. We will be determining soon whether the latter can be held in-person.

Advocacy

• Continuing to support our Youth Ambassador program
• Continuing to work at the national level to advocate for people with narcolepsy with regulators and legislators, including bringing narcolepsy advocates to Capitol Hill during Rare Disease Week in Washington, DC
• Furthering our work with other rare disease partners and professional networks

Clinical and Research Information

• Providing up-to-date information on clinical trials, studies, and research activities
• Continuing our work with medical and pharmaceutical partners that serves the needs of patients and families in the narcolepsy community

Keith Harper President	Sharon O’Shaughnessy Vice President
Stephanie Fischer Secretary	Paul Reynolds Treasurer
Carol Arnette	Piper A. Paul, Esq.
Rajeev Sachdeva

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