Thursday, May 28
5:15pm – 6:00pm Conference Registration
6:00pm – 9:30pm Dinner & “Getting to Know You Session” – led by NBIA parent Megan Thomas
This session, which includes families and children, will help you get acquainted with your fellow conference participants. It has proved to be a popular and worthwhile session and always is marked highly on conference evaluations, so you don’t want to miss it!
Friday, May 29
9:00am – 9:15am Welcome – Patricia Wood, President, NBIA Disorders Association
9:15am – 10:15am Keynote Speaker – Dr. Joel Carter
Dr. Joel Carter is a pain and palliative medicine specialist is Minneapolis where he treats patients. He is also an author, storyteller and artist. He will share with us his thoughts on the journey one takes through life, and how hope and our stories help us heal.
10:15am – 10:30am Coffee Break
10:30am – 11:15am What’s New In NBIA? - Allison Gregory
Allison Gregory, genetic counselor at Oregon Health & Science University, will tell us about the exciting progress made in the past year and new directions for the future.
11:15am – 12:30pm Resources, tools and problem solving – Dr. Tamara Zagustin
Dr. Tamara Zagustin is board certified in Physical Medicine and Rehabilitation and in Pediatric Rehabilitation Medicine. She will share with us what resources an NBIA family might access for a better quality of life, discussing what tools are available, and helping families know what to expect and how to ask for what they need. This session will include a 30 minute Q&A where the audience can ask questions about particular problems or share a success story that might help others.
12:30pm – 1:30pm Lunch
1:30pm – 2:30pm The Pace of Progress – Dr. Penny Hogarth
Do you sometimes feel as if the path to treatment is too slow? Dr. Penny Hogarth from Oregon Health & Science University will give us an overview – in a very visual way - of the accelerating pace of research discovery in all NBIA disorders.
2:30pm – 3:30pm The power of a great story! Marsha Bryan, Megan Thomas & Melissa Woods
Marsha Bryan, our new development director, Megan Thomas, an attorney in estate planning, and Melissa Woods, our social media director, present: Why is stirring the heart key for fundraising success? What is NBIA’s story? Does it capture the heart of the impact of our work? Learn more in this interactive workshop.
3:30pm – 3:45pm Coffee Break
3:45pm – 4:15pm Deferiprone Trial Update – Jennifer Ferguson
Jennifer Ferguson, a Family Nurse Practitioner at UCSF Benioff Children’s Hospital Oakland, will update us on the progress of the deferiprone clinical trial which started in January, 2013, and is still underway. Some of the topics she will share include anecdotal patient experiences, the excellent safety profile of the drug to date, the amazingly high completion rate of participants in the trial, and the importance of this research as we look toward future treatments.
4:15pm – 5:30pm Movement & Exercise - A Way to Enhance Your Life
We have a panel who will discuss opportunities for movement and exercise that can enhance your quality of life. Panelists include Cara Gulbronson, Wheelchair Sports Coordinator from Kenny Courage Rehabilitation Institute, Cary Bittinger, Dance Therapist, Gretchen Pick, Young Dance Artistic Director and NBIA adult Michael Cohn. The session will conclude with a 10-15 minute dance performance by Mike Cohn and his dance friends; as well as a possible presentation from an NBIA parent on how they have helped improve the quality of life of those with special needs with their inclusion in all aspects of life, including endurance events in their communities with a “ride along” program.
5:30pm – 6:15 pm You Talk - We Listen
This optional session is an opportunity to ask questions, raise concerns or share ideas with the NBIA Disorders Association Board of Trustees, along with some members of the Scientific & Medical Advisory Board. No topics are off the table and we are there to listen. If you can't attend this session, you are welcome to write down your comments or concerns for us on an index card you will find in your registration folder. Or catch us some time during the conference for a chat.
Saturday, May 30
8:45am – 9:00am Announcements
9:00am – 10:45am Research Updates
NBIA researchers will share their work with us. Drs. Susan Hayflick, Penny Hogarth, Paul Kotzbauer and Ody Sibon are scheduled to present their work.
10:45am – 11:00am Coffee Break
11:00am – 12:15pm Research Updates continued
1:00pm Lunch at Brooklyn Park Community Center, Centennial Gazebo
The park is an easy 12 minute walk from the hotel for those without transportation. The hotel shuttle may be available for a ride if needed and requested ahead of time, but is not handicap accessible.
2:15pm Group Photo at picnic
2:30pm – 2:45pm Memorial at picnic
2:45pm – 5:30pm Games, socializing at park
8:00pm – 11:00pm Dessert Social
We will be having a silent auction and drawing for gift baskets donated by NBIA families, friends and board members with all proceeds going to NBIA Disorders Association. All families are encouraged to participate and donate a basket. Suggestions are items from your state or country, a favorite hobby, something made or donated by companies you have contacted, or anything you like! Please contact Veronica Bonfiglio to let her know if you are bringing a basket or item to the conference or if you have any questions. Her email is firstname.lastname@example.org In addition, we will be having a guitar drawing and a DJ & MC the last 2 hours of the social to help us "Get Happy," our theme for this year's conference.
Sunday, May 31
8:45am – 9:00am Announcements
8:45am – 10:00am Breakout session for Adult NBIA individuals (over 18) – Jennifer Roberts
Led by Jennifer Roberts, a counselor, this session will explore challenges, coping skills and other topics of interest to NBIA-affected adults attending the conference. We provided this session for the last two conferences and it was deemed to be very helpful by attendees.
9:00am – 10:00am Myofacial Release - Megan Taylor
Megan Taylor, PT, will share how this technique can be beneficial for NBIA individuals and others.
10:00am – 11:30am Interactive Art & Music Event - Erin Rafferty-Bugher & Emma Moonier
Erin Rafferty-Bugher, art therapist, and Emma Moonier, music therapist, will lead participants in learning what art therapy and music therapy is all about by engaging in an interactive and experiential community based art and music therapy process. Participants are invited to bring a small item that fits in the palm of your hand, such as a shell, rock, gemstone, bead or special object that they will contribute to the group art piece. Those in the care room may join this session if they desire.
11:30am – 12:00pm Closing Ceremony
***We will also have an Early Bird Get Together from 8 – 8:30 am on Saturday for MPAN and PLAN families and on Sunday for BPAN families - one or more researchers will be available for these meetings as an informal gathering where you can ask any questions you might have about research, treatments and clinical advice for your particular disorder.