8th Family Conference, May 28-31, 2015, Minneapolis, MN
A record number of participants--175 people from seven countries--turned out for the Eighth International NBIA Disorders Conference May 28 to 31 in the Minneapolis suburb of Brooklyn Center.
The 47 families who came, including 22 first-timers and 37 NBIA individuals, had a chance to hear updates on the latest NBIA research, help raise $2,000 for the organization by purchasing family-made gift baskets, learn the importance of telling one’s story, play with therapy dogs and hang paper doves on a tree to remember loved ones lost to NBIA. Some danced at the dessert social, played NBIA Bingo during the “Getting to Know You” session and spread news about the conference on Twitter using the hashtag, #GetHappyNBIA2015.
Those who completed evaluations said being at the conference with old friends and making new ones was like being with family.
With a record number of new families attending, we offered a mentoring program for the first time. We asked returning NBIA conference families to volunteer so they could introduce newbies to others and show them the ropes. Sixteen families participated, either as mentors or first-timer attendees.
The attendance reflected our growth as an organization, including the increasing number of disorders now under the NBIA umbrella.
To that end, we offered early morning meetings on Saturday and Sunday for the MPAN, BPAN and PLAN families. This gave them time before the conference sessions to discuss specific disorder-related information with the researchers.
We also had clinic appointments on Wednesday and Thursday before the conference started, giving 24 families time to meet privately with our NBIA experts to get information and advice specific to their situation.
Dr. Joel Carter, a pain and palliative care specialist in the Minneapolis area, kicked off our conference Friday morning. His keynote speech, “The Enduring Journey of Hope and Healing,” was an exploration of the power of storytelling and the enduring human spirit in the face of adversity. It set a poignant and hopeful tone for the conference.
Carter described how a dying woman spoke about meeting her husband, causing a medical student to remark: “This is better than any morphine we could give her.”
Carter said he remembers patients by their stories. And stories help heal the broken parts of our lives, he said.
One man at the conference said Carter’s talk was worth the price of admission.
The storytelling theme continued in an afternoon session titled “The Power of a Great Story!” led by Development Director Marsha Bryan, Planned Giving Director Megan Thomas and Social Media Director Melissa Woods. Families participated by writing about their experiences living with NBIA.
Those stories are a powerful way to raise awareness about NBIA, as well as bring strength and hope to others, Bryan said. Those stories also are powerful to donors.
At the end of our first day, the NBIA Board of Trustees held its first official listening session to give families an opportunity to ask questions, give feedback to the board and learn more about the structure of our organization. In response to several comments, the board said it is considering allowing new ways to raise money for designated diseases, and will be sharing a new research funding policy soon.
Saturday featured our researchers giving updates on their work followed by an afternoon picnic at a nearby park. Families played games, and all gathered for the memorial tribute. Two families read poems that were favorites of their missed loved ones.
The dessert social that night featured a two-hour dance party. The consensus was that every future conference must have dancing!
On Sunday, our last day, we again held a break-out session for NBIA adults over 18 to explore challenges, coping skills and other topics of interest. While they met as a group with a counselor, we had a session in which a local occupational therapist and a physical therapist demonstrated ways to relieve physical pain by using gentle, sustained pressure to parts of the body where there is tightness and pain. The pain-relieving therapy, called myofascial connective tissue release, helps restore motion to affected parts of the body.
Our conference concluded with a music and art therapy session for everyone. Participants pounded percussion instruments and then contributed to an art project with items that had personal meaning. The items were added to a canvas made for this project in our logo colors. The finished artwork is now on display at the organization’s office in El Cajon, Calif.
We are grateful to our sponsors who made our family conference a success. These sponsors donated $25,245 to help us defray our costs. A special thanks to our premier sponsor, Retrophin Inc., which also had five employees in attendance.
Because four researchers at the conference are involved with the European Union grant called TIRCON, funds from TIRCON also helped with conference expenses.
Part of the TIRCON project is to disseminate information about the work being done.
We also received $4,085 from conference donors for scholarships, enabling us to provide aid to nine first-time families who might not have been able to attend otherwise.
Closing Ceremony Video from the Eighth International NBIA Disorders Association Family Conference:
Photos of Conference Attendees
People from all over the Country and World came to the 2015 NBIA Family Conference. View a photo gallery of attendees by clicking the button below:
