2019 Family Conference Program (Preliminary)


8:30-5:15pm – Conference Registration


8:30-11:00am – BPAN families clinical group meeting with Drs. Susan Hayflick, Penny Hogarth, Sucheta Joshi, Kirsten Campbell, and Allison Gregory, genetic counselor.

1-2:30pm - PKAN families clinical group meeting with Drs. Susan Hayflick, Penny Hogarth, and Kirsten Campbell, and Allison Gregory, genetic counselor.

2:30-4:15pm – PLAN families clinical group meeting with Drs. Paul Kotzbauer, Susan Hayflick, Penny Hogarth, and Kirsten Campbell, and Allison Gregory, genetic counselor.

4:15-5:15pm – Mentor Program Gathering

We understand it can be challenging to come to a meeting where you don’t know anyone—yet. We have created our Mentor Program to help facilitate this process and match conference veterans with first-time attendees. What is the mentor's role? To be a friendly face, to help make introductions, to share your experience of caring for or being an individual with an NBIA disorder. It's a real gift for anyone who is new to a group to have an experienced person come along side and be a guide. If you wish to participate either as a conference veteran or first-time attendee, please check YES on the conference registration form where it asks if you are interested in participating in the Mentor Program.

Conference Kick-Off:

5:30-8:00pm – Presentations, Dinner, and Getting to Know You Activity


7:30-9:00am – MPAN families clinical group meeting with Drs. Susan Hayflick and Penny Hogarth, and Allison Gregory, genetic counselor.

9-9:15 – Welcome – Patricia Wood, Founder and President, NBIA Disorders Association

9:15-10:15 – Keynote Address – Gina Perri Cannady

10:30-12:00pm - Helping Families Plan a Safe, Fulfilling Life for their Loved Ones with Special Needs – Mary Anne Ehlert, President, Protected Tomorrows:

Protected Tomorrows, Inc. is the leader in enhancing the lives of families with members who have special needs. Protected Tomorrows helps ensure the well-being of a loved one by creating a Future Care Plan™ that addresses the many concerns of these families such as: future care funding, government benefits, legal considerations, residential options, employment opportunities, recreational choices, education options and family communication.

1:00-1:45pm - Cannabis use in NBIA disorders – Dr. Jenny L. Wilson:

Dr. Wilson will review what is known about use of marijuana products in neurologic conditions including seizures, increased muscle tone, and pain. She will also review the results of a survey of cannabis use in patients with NBIA disorders.

Breakout Sessions:

2-2:45pm and 2:45-3:30pm - Introduction to Augmentative and Alternative Communication – Carol A. Page, PhD, CCC-SLP, ATP, CBIS, Director of South Carolina Assistive Technology Program at USC School of Medicine.

One of the issues that people who are nonverbal face is the frustration of having a lot to communicate and no way to verbally express it. Sometimes children who are nonverbal resort to extremes in behavior in an effort to communicate. Explore the role AAC can play in minimizing unwanted behavior and increasing desired behaviors. The role of the speech-language pathologist in choosing a communicationn system will be reviewed. Discover basic principles for setting up a communication device. Learn basic strategies for intervention that promote language learning and successful communication. 

2-2:45pm and 3:45-4:30pm - Creating an Intro to your Child - Meg Talley Dyer, Chair, NBIA DA:

Have you struggled to help others understand your child? The things that he/she needs or enjoys? This session will provide practical guidance for creating a document to tell your child’s story.

2:45-3:30pm and 4:30-5:15pm - How we did it – Successful Fundraisers – Amber Denton and 5 NBIA Families:

Come learn from families who have successfully raised money for us, using a variety of techniques from car washes to golf outings and dinners. Discover how they creatively considered ways to build on community and family connections, resulting in needed funds and NBIADA advocates.

2:45-3:30pm – Changing Times – Patricia Wood, President, NBIA DA:

Session for parents of NBIA individuals that have been living with an NBIA diagnosis for greater than 8 years. This is an opportunity to share your thoughts and perspective with other parents who have been on this journey through the years, and discuss life changes, common issues and ideas for the future.

3:45-4:30pm and 4:30-5:15pm - The Pace of Research for Rare Diseases - Dr. Arnold Strauss

Dr. Strauss will outline the key steps in characterizatin of rare diseases, such as the NBIA disorders, including diagnosis, natural history, development of animal models to assess possible interventions, and evaluation of potential therapies. A focus will be on the current status of gene therapy for rare genetic disorders. 

2:00-5:30pm – Physician Training Session (invitation only)

5:30-6:00pm – “Lighting up the Night with Love” – Memorial Tribute


8:15-8:30am – Announcements – Patricia Wood, President, NBIA DA

8:30-10am - Breakout Research Sessions by Sub-Type and Parent Facilitated/Family Only Time

10:15-11am – Research Overview – Dr. Susan Hayflick, Director, NBIA DA Scientific and Medical Advisory Board

Dr. Hayflick will provide an overview of the research currently taking place in all NBIA disorders (including those not yet identified) and discuss how research in one area impacts others.

11:00-12:00 – Clinical Trials Updates

  • 11:00-11:20: Spoonbill – Dr. Penny Hogarth
  • 11:20-11:40: CoA Therapeutics – Dr. Suzy Jackowski
  • 11:40-12:00: Retrophin – Dr. Maria Escolar (tentative)

12:30pm – Buses Depart for Family Picnic at Wannamaker Park

7-8pm – Special Invite – Major Donor Reception (invitation only)

8-11:00pm – Dessert Social and Dancing


8-9am - NBIA Adult Activity Session – Tina Cadavid, LISW

9-10am – NBIA Adult Sharing Session – Tina Cadavid, LISW

9:00am - Announcements

9:15-9:45am - New Fundraising Toolkit – Colleen Lukoff

Considering raising funds for NBIADA? We have a new toolkit to help you consider ways to engage friends and family, and your broader community, and raise money to help in the battle against NBIA disorders. Developed with our Development Committee comprised of families who have successfully raised funds for us, the toolkit includes tips and tools to help you plan and execute your efforts.

9:45-11:00am - Dare to Dream – Sherry Byrne, Parent, NBIA:

EVERYONE has a dream. Discover the person behind the disability and help them live their lives to the fullest by learning and respecting their strengths, preferences and what’s important to them. No one’s dream is insignificant.

11:00-11:15am – Complete conference evaluation – drawing for $50 prize for those completing their evals!

11:15-12:00pm – Conference Closing Ceremony



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