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FTDDR: People Serving People

FTDDR: People Serving People

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While the FTD Disorders Registry (FTDDR) would not be possible without our founding and supporting organizations, our true foundation continues to

While the FTD Disorders Registry (FTDDR) would not be possible without our founding and supporting organizations, our true foundation continues to be the people who comprise the community that is working to end frontotemporal disorders.

Each individual who enrolls, whether diagnosed person, family member, caregiver or friend, becomes a citizen scientist and contributes information.

Researchers, clinicians, and others in supportive roles in the medical community work toward finding treatments and cures for these life-­altering diseases.

Together we can advance the science and help change the course of the disease and put an end to FTD.

Below lists those serving within FTDDR. You can learn more on our website about these gifted and generous people who are part of the team.

Registry Director

Dianna K.H. Wheaton, MS, Ph.D., CHES 

Dr. Dianna Wheaton joined the field of FTD research as Director of the FTD Disorders Registry in January 2016. She has more than 20 years of clinical science research experience and genetic counseling for patients and at-risk family members.

Dr. Wheaton has authored numerous papers describing genes that cause neurodegenerative eye disease and the associated clinical symptoms, participated as co-investigator for interventional clinical trials, and acted as principal/co-investigator for genetic epidemiology studies.

Her research commitment was refocused to neurodegenerative dementia disorders after her father’s diagnosis of a temporal brain tumor and her brother’s diagnosis of younger-onset dementia.

Dr. Wheaton works directly with persons diagnosed with FTD and their families, and leads outreach efforts to lay and health professional communities. She also actively works with clinicians, researchers and organizations interested in using the Registry to answer important research questions and to support clinical trials.
 
Other Current Registry Team Members:

  • IT System Administrator: Kevin Wheaton
  • Communication Coordinator: Sherry Harlass

 

Management Committee

The Management Committee of the FTD Disorders Registry is composed of volunteers who provide connections to our founding organizations, funding sources, and the research community.

  • President: Jary Larsen, Ph.D., University of California, San Francisco/Zuckerberg San Francisco General Hospital (UCSF/ZSFG) and the VA Northern California
  • Treasurer: Rodney Pearlman, Ph.D., The Bluefield Project to Cure Frontotemporal Dementia, San Francisco, CA
  • Secretary: Laura Mitic, Ph.D., The Bluefield Project to Cure Frontotemporal Dementia, San Francisco, CA
  • Patrick Brannelly, MBA, Tau Consortium, Rainwater Foundation, Fort Worth, TX
  • Susan L-J Dickinson, MS, CGC, The Association for Frontotemporal Degeneration, Radnor, PA
  • Diana Shineman, Ph.D., Tourette Association of America, Bayside, NY

 

Scientific Advisory Board

Our Advisory Board is composed of clinician and researcher volunteers from the FTD and dementia community. Each volunteer member is a recognized leader in the fields of FTD disorders, dementia, clinical care, patient registries and/or clinical trials.

  • Dr. Adam Boxer, University of California, San Francisco, CA (Chair)
  • Dr. Brad Boeve, Mayo Clinic, Rochester, MN
  • Dr. Lawrence Golbe, Rutgers Robert Wood Johnson University Hospital, New Brunswick, NJ
  • Dr. Daniel Kaufer, University of North Carolina, Chapel Hill, NC
  • Dr. David Knopman, Mayo Clinic, Rochester, MN
  • Dr. Jessica Langbaum, Banner Alzheimer’s Institute and Alzheimer’s Prevention Initiative
  • Dr. Chiadi Onyike, Johns Hopkins Hospital, Baltimore, MD

Celebrate with Us! This week we are looking back at the history and highlights, statistics and successes as well as the future opportunities for advancing the science and moving toward finding treatments and a cure for persons affected by the full spectrum of FTD disorders. 

Here is a list with links to all of the articles we posted about our Second Enrollment Anniversary:

Together we can help change the course of the disease and put an end to FTD.