• Family Conference 2023
  • DecNewsletter
  • First Legacy Guardian Peggy Davis


OUR MISSION

In our drive to find a cure for NBIA,
we provide support to families, educate the public and accelerate research with collaborators from around the world.


 

News

NBIAcure prepares to submit for FDA
approval of CoA-Z compound

 

Educational Resources

​Posters, flyers and
other educational handouts

 

Media Tips

Most of you, if not all of you, have an interesting story to tell about NBIA. But how do you pitch a story to the media and get results?

Kristine Tanzillo, a public relations specialist in San Antonio, Kristina De Leon, a reporter with WOAI-TV in San Antonio, and Mary Ann Roser, an NBIA board member and journalist, discussed ideas for stories, and how to share them, at the Seventh International NBIA Disorders Association Family Conference in the AlamoCity in April.

Tanzillo, whose late sister had NBIA, provided a handout of helpful tips.

Dr. Don McGeary

To cope with disability, be active, reach out to others, learn to relax

As the father of a disabled son, clinical psychologist Don McGeary knows how stressful life can be for the person who is disabled—and for their families.

That’s why learning to manage stress is so important, said McGeary, an assistant professor and residency director at the University of Texas Health Science Center at San Antonio. He was among the speakers at the Seventh International NBIA Family Conference in the AlamoCity in April.

Unfortunately, he said, there is no research on coping with NBIA. So, what can be done?

Most of us know that people with a long-term illness or disability enjoy the control and flexibility of receiving health care in their homes--and family caregivers benefit as well. But choosing a home health agency and knowing which questions to ask can be daunting.

langley1Representatives of two nationally known home care agencies provided tips at the Seventh International Family Conference in San Antonio: Jennifer Lopez , regional director of quality assurance at ResCare Home Care, and Dr. John Langley, chief medical and quality officer for Maxim Healthcare Services. Patricia Wood, NBIA president and a user of home health services, provided a consumer’s perspective.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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