Organizations & Resources

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The Association for Frontotemporal Degeneration – Katie is the AFTD Volunteer Regional Coordinator for Southern New England.  AFTD provides support to patients, caregivers and families struggling with FTD in their lives.  They provide resources that can educate professionals and coordinate a yearly educational conference for families that is exemplary.  They remain current and involved in research efforts for frontotemporal degeneration with a vision of a world without FTD.

The Frontotemporal Disorders Unit at Massachusetts General Hospital – Katie provides consultation services to the FTD Unit at MGH in the areas of caregiver support, marketing, and fundraising.  Katie’s husband Mike was a patient of the FTD Unit.  The caring team of medical professionals help families navigate the journey of FTD through partnership, expertise, and compassion.

Boston Area FTD Support Group – Katie is a co-facilitator of this support group for caregivers of loved ones with a frontotemporal disorder.  To find out more about meeting times and how to join this group email ftd.boston@gmail.com

2nd Tuesday of every month
Mount Auburn Hospital
Cambridge, MA
Clough Board Room (2nd floor near the cafeteria)
7:00 – 9:00PM
Facilitators:  Amy Almeida 
Last Tuesday of every month
Newton Wellesley Hospital
Newton, MA
Bowles 1 Conference Room (2nd floor, take the South elevator)
7:00 – 9:00PM 
Facilitators:  Katie Brandt & John Kearney

National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.  NORD is the sponsor for Rare Disease Day in the United States.