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Ninth International NBIA Disorders Association Family Conference

2017 Family Conference Wrap-up Video


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2017 Family Conference Photo Montage Video

The Ninth International NBIA Disorders Association Family Conference was a record-breaker: It drew 225 people from five countries, including 70 NBIA families and 55 NBIA individuals, twice as many as our conference just four years ago.

Conference Group Picture 2017

Held June 1 to 4 at the Hyatt Regency Deerfield near Chicago, our conference theme was Team NBIA: “Different genes, One team.” We wanted our families to feel the sense of community and strength that being united provides. We believe they left feeling empowered.

Ninety-five percent of those filling out evaluation forms rated the conference as stellar or excellent. Seventy-seven percent said they’d come again, and the remaining 23 percent said they would return, if their budget allows.

One person commented that “the information sessions and the ability to meet with other parents and children were wonderful.” Another said that the “information was good, concise and delivered in an understandable format for families.”

Family members said their No.1 reason for attending was to meet others like them; getting updates on the latest research was a close second.

Many families came two days before the official start to consult with NBIA physicians and to enjoy time in Chicago. Priority for doctors’ appointments was given to the 35 families who were first-time conference goers and asked for time to discuss treatments and medications with the experts.

2017 conference chart of attendeesAs the chart on the right shows, we grow with each conference. This time, we outgrew the Embassy Suites and had to pay the higher costs that go with a larger venue.

A big thanks to our conference sponsors who donated $29,750 to help us defray our costs. A special thanks to our premier sponsor, Retrophin Inc., which supported this conference and the two preceding ones. Conference registration fees brought in $15,000, family-donated gift baskets for our silent auction and drawings generated $4,000 and scholarship donors contributed $5,300, helping 15 families attend.

Conference expenses of $63,000 exceeded over revenues of $58,000 by $5,000, not counting staff hours. We will make up for the shortfall by tapping our general fund.

Here are additional details on the conference:

We had so many first-timers participating that demand for mentor families was high. We were able to match 26 newbies with 13 returning families who answered questions, let them know what to expect and made introductions that helped them feel welcomed and included.

Also that first evening, we had a happy hour reception followed by our traditional “Getting to Know You Session” in the ballroom. Participants had such a fun time playing games that hearing each other was a challenge!

Diane Kolvek speakingWe kicked off the first full day with an inspiring keynote address, “Put Good Out,” by Diane Kolvek, an actor, inspirational speaker and vice president of Ameritas in Omaha, Neb. Kolvek said that after her sister was murdered by a stranger, she discovered the healing power of performing good works. “I knew I had to do something to get out of bed in the morning,” she said.

She and her family established a college scholarship for aspiring paramedics in memory of her sister, who had worked in emergency medicine. Hearing back from scholarship winners, Kolvek began to realize that helping others made her feel better.

Doing good works, including volunteering to help others, stimulates the brain’s “pleasure zone,” increases life expectancy and reduces blood pressure and stress, she said. She encouraged the families to put good out “without expectation of return” and without “strings (attached) to pay it forward.”

“We can control what we put out into the world,” Kolvek said.

Next was an information session on participating in clinical trials, a growing possibility for our families.
For the first time, we had simultaneous breakout sessions so families and individuals at different stages of NBIA could choose from among topics, including sessions for specific disorders led by NBIA families.

A breakout session, “Advocating for your Child,” led by attorney and educator Michael L. Kiser, provided information on legal requirements for serving students with disabilities. The laws require schools to provide services that facilitate learning, but they are not required to maintain or improve medical conditions. Keeping this in mind, parents should frame their requests within the context of the student's academic goals, Kiser said.

He recommended adopting a non-adversarial approach by making school officials feel part of their team rather than an "us versus them" approach. Always provide a way for them to "save face" by giving them the benefit of the doubt, he said.

Sometimes, parents will need the help of special education advocates, attorneys or evaluators. Names can be found on the web. Another resource he recommended is www.isbe.net/Pages/Special-Education-Parents-of-Students-with-Disabilities.aspx .

Our development director, Colleen Lukoff, created a moving slideshow to honor families who raised funds to fight NBIA disorders. She called each family up to the front and they were given butterflies to attach to their name tags in acknowledgement of their contributions. It was moving to see a large group of families standing up and illustrating our strength in numbers in such a visual way.

Fundraisers Recognized at Conference

We closed the first full day with an update on the deferiprone clinical trial, an opportunity to hear from our board, including five new members, and a presentation from me on the NBIA Alliance, an international collaboration of NBIA organizations that supports research to cure all NBIA disorders.

Knights of Columbus at picnicThe second morning was dedicated to updates from our researchers. That afternoon, we headed to the Lake Country Forest Preserves, a beautiful setting for a picnic lunch, all courtesy of the Knights of Columbus Councils of Deerfield and Vernon Hills.

In addition to enjoying the outdoors, we held a memorial tribute that included reading the names of those we have lost to NBIA in the last two decades, reciting a memorial poem and scattering wildflower seeds in an open field. We also placed a plaque in remembrance of our loved ones on a birdhouse provided by Lake County Forest Preserves.

Memorial Tribute picturescattering wildflowers

Memorial plaque

Rare Science LogoSherelyn holding Rare BearAfterward, we played games and distributed Rare Bears provided by Rare Science Inc. to NBIA individuals. Rare Science is a nonprofit that works with patient families and foundations to find therapeutic solutions for children with rare diseases. The bears are made by volunteers, and Retrophin employees stuffed and stitched them together. Forty-two NBIA individuals received them.

Harmony for Hope at picnicHarmony4Hope, a Chicago nonprofit, also handed out goodie bags to the kids, including sunglasses, candy and a $10 iTunes card. This organization holds benefit concerts for rare disease research, has a program featuring individuals affected by rare diseases sharing their stories with medical professionals and offers gifts of playlists, iTunes gift cards and music technology every Feb. 28 in honor of World Rare Disease Day.

Before the picnic ended, NBIA individuals tossed whipped-cream pie plates at volunteers to “Take One for the Team,” inspired by the ice-bucket challenge for ALS.

Little Boy getting pie in face

That evening, we held our traditional dessert social, which featured sweets, libations and a crowded dance floor of kids and adults.

Our final day featured the discussion of a new gene-editing technology called CRISPR/Cas and its potential to correct genetic mutations and a panel on Recreation & Leisure Activities that got high ratings from families.

We closed the conference with a video and slideshow of highlights, including smiling faces and information-sharing.

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We are grateful to Retrophin, Inc. for their sponsorship.

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