The 2015 FTD Caregiver Conference, held on Friday, July 24th at the University of Pennsylvania, hosted 200 attendees, including individuals diagnosed with a frontotemporal lobar degeneration spectrum disorder, caregivers, other friends and family members affected by FTD, health care providers, research professionals, and students.
Attendees traveled from fourteen different states and Spain to attend, while representatives from The Association of Frontotemporal Degeneration, Alzheimer’s Association, Delaware Valley Chapter, Penn’s Institute on Aging, CurePSP, the ALS Association, Penn Home Care & Hospice, the Philadelphia Corporation of Aging, the Main Line Art Center and ARTZ Philadelphia answered questions and provided information about the services available through their organizations.
The conference’s speakers, including Penn’s own Murray Grossman, MD; Colin Quinn, MD; H. Branch Coslett, MD; David Irwin, MD; Corey McMillan, PhD; Amy Price, BS; Beth Wood, MS, LCGC; Brianna Morgan, BSN, RN; and Lauren Massimo, PhD, CRNP presented on a diverse range of topics including FTD, Amyotrophic Lateral Sclerosis, Corticobasal Syndrome, how tools like MRIs, genetic screens, and biomarkers help clinicians assess the status of a patient, and how different care techniques can be utilized by caregivers to support their loved ones.
In addition to the Center’s own clinicians and research professionals, the conference featured attorney Paul Feldman, who spoke on legal and long term planning, Mathew Sharp, MSS, who spoke on resources provided by the Association for Frontotemporal Degeneration, and Claire Day, who spoke on resources provided by the Alzheimer’s Association.
Finally, The conference could not be complete without keynote speakers Sandy Karger, MS and Jamie Arking, PhD, MBA, who presented their very moving, personal journeys with FTD.
For videos of this year’s conference sessions, visit http://ftd.med.upenn.edu/secondary/media-library
Feedback from Attendees: Hear what our participants had to say!
“Every speaker’s topic was relevant and interesting and on-point. I have a wealth of information now available to me. . .”
“And thank you again for such a wonderful conference on July 24- I learned from every presenter, and thought the variety and scope of the presentations were amazing. The whole day was so worthwhile- and of course it is always great to have a chance to talk to others attending.”
“The conference was very informational, helpful and reassuring. Thank You.”
“. . .we want to express our deep appreciation for the FTD conference held at the U. of Penn on Friday, July 24th.
This is our second year to attend and, both times, we’ve found it very profitable. The information regarding parking and the people who held signs from the 38th and Walnut lot were very helpful, in what can be, an overwhelming environment!
The variety of presentations covered every aspect of a caregiver’s questions and concerns. We particularly enjoyed hearing the experiences of other caregivers.
Please convey our thanks to Dr. Grossman for his focused interest and study of brain disorders and for his genuine concern for families dealing with those disorders.”
“Thank you . . . Dr Grossman, and all the presenters & attendees. An outstanding effort– please take a bow for a terrific conference”
“Thank you . . . for an excellent conference. I think all the science talks were very clear, they elicited great questions- our FTD caregivers & families are a very savvy group. And the keynotes by Sandy & Jamie were very heartfelt & reminded us all how much we share as caregivers & how unique everyone’s FTD journey can be. Looking forward to next year!”