Advocacy & Education

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Katie has become a powerful public speaker in the areas of Frontotemporal Degeneration (FTD), caregiving and the impact of dementia on families.  Katie is available to run informational sessions, educational workshops, panel presentations, and keynote addresses.  Contact Katie to find out more.

Advocacy

National Alzheimer’s Project Act (NAPA) Advisory Council on Alzheimer’s Research, Care and Services – Washington, DC. In 2017, Katie was appointed as a member of the Council by the Secretary of Health and Human Services after a nomination from the Association for Frontotemporal Degeneration to represent the caregiver perspective and raise her voice for the related, young-onset and atypical dementias.. In 2019, Katie was appointed Co-Chair of the Council with Dr. Allan Levey of Emory University.

Massachusetts Rare Disease Day. Boston, MA. Every year since 2016, Katie has been the emcee for the this exciting event, hosted by the Massachusetts Biotech Council, welcoming 500 patients, advocates, elected officials, policy makers, clinicians, researchers and industry professionals for a day to celebrate that alone we are rare, together we are strong!

Alzheimer’s Advocacy Forum. Washington, DC. Katie was one of over 1,000 advocates marching on Capitol Hill to speak with elected officials about the importance of supporting increased NIH funding for Alzheimer’s and related dementia research. March 2015.

National Alzheimer’s Project Act (NAPA) Advisory Council Meeting. Washington, DC.  Katie provided public comment to share her experience as an Alzheimer’s and an FTD caregiver.  July 21, 2014.

Rare Disease Day 2014.  Massachusetts State House, Boston, MA.  Public panel presentation to raise awareness for issues related to rare disease and caregiving.  February 28, 2014.

Conferences

Map Through the Maze Alzheimer’s Association Annual Conference. Understanding Frontotemporal Degeneration, presented in collaboration with Brad Dickerson, MD and clinicians from the Mass General Hospital Frontotemporal Disorders Unit. Annually 2014 – Present.

Harvard Alzheimer’s Buddies Symposium. Cambridge, MA. Workshop: Advocacy for Alzheimer’s and Related Dementias. April 2015.

Customer Centric Medical Information Conference.  Boston, MA.  Panel presentation to pharmacy industry to provide rare disease patient and caregiver perspective.  June 26, 2014.

Ometeca Humanities Conference. Stonehill College. Provided keynote presentation Holding Onto The Treasure: Biology’s Influence on Identity. June 19, 2014.

AFTD Caregiver Education Conference.  Salt Lake City, Utah.  FTD Widow panel presentation to conference attendees.  April 2013.

AFTD Caregiver Education Conference. Boston, MA. FTD Spouse panel presentation to conference attendees.  June 2011.

Healthcare

Beth Israel Deaconess Medical Center. Boston, MA. Presentation to Cognitive Neurology Staff “One Diagnosis, Two Patients: Supports & Services for the FTD Caregivers” July 16, 2014.

Brigham and Women’s Hospital. Boston, MA. Presentation to Behavioral Neurology Staff “One Diagnosis, Two Patients: Supports & Services for the FTD Caregivers” July 9, 2014.

Massachusetts General Hospital.  Boston, MA.  Presentation at Clinicopathologic Conference focused on Frontotemporal Dementia to neurologists and related clinicians.  June 2013.

Education

Harvard Medical School. Boston, MA. Presentation at the Harvard Medical School Dementia Course. The Role of Community in Clinical Care. Spring 2018, 2019 & 2020.

St Thomas Aquinas High School. Dover, NH. Commencement address.  Recipient of Lux in Tenebris Award in recognition of volunteer and advocacy work and the creation of Love Is Out There.

Stonehill College. Easton, MA. Multi semester course presentations to undergraduate students “A Family Relationship With Policy” focused on how a family deals with a health crisis and experiences utilizing public aid systems.  Fall 2012, 2013, & 2014.

The Heller School for Social Policy, Brandeis University. Waltham, MA. Multi semester course presentations to graduate and PhD students “A Family Relationship With Policy” focused on how a family deals with a health crisis and experiences utilizing public aid systems.  Spring 2012, 2013, 2014 & 2015.

Saint Anselm College.  Manchester, NH. Presentation to Adulthood And Aging students focused on caregiving, skilled nursing, hospice, and end of life issues.  December 2012.

Biotech & Industry Professionals

Wave Life Sciences. Boston, MA. Love, Loss and Resilience: One Caregiver’s Journey with Frontotemporal Degeneration.  A presentation to 100 scientists and staff members highlighting the impact of young-onset dementia. Spring 2018.

Merck Pharmaceuticals. Boston, MA. Love, Loss and Resilience: One Caregiver’s Journey with Frontotemporal Degeneration.  A presentation to 100 scientists and staff members highlighting the family perspective of living with FTD. April 2015.

FORUM Pharmaceuticals. Boston, MA. Love, Loss and Resilience: Once Caregiver’s Journey with Frontotemporal Degeneration.  A presentation to scientists, researchers and staff members highlighting the family perspective of living with FTD. December 2014.

Community-Based Care Settings

Kent County Senior Care Professionals. Greenwich, RI. Provided overview of FTD, AFTD Partners in Healthcare Program, and local FTD resources. April 2014.

Bristol Networking Group. Taunton, MA. Provided overview of FTD, AFTD Partners in Healthcare Program, and local FTD resources. January 2014.

Easter Seals. Adult Day Health Program. Manchester, NH. Provided overview of FTD, AFTD Partners in Healthcare Program, and local FTD resources. July 2013.