PHILADELPHIA – On Friday, May 12, the Penn Frontotemporal Degeneration Center will host its annual, day-long conference for caregivers of persons with FTD and related conditions such as ALS and Corticobasal Degeneration. The conference is open to family caregivers, health professionals, scientists, students and others with an interest in FTD and will include presentations by Murray Grossman MD, EdD, and a team of experts in the field of FTD.
Frontotemporal degeneration (FTD) refers to a family of disorders characterized by the progressive loss of neurons (brain cells) in the frontal and temporal regions of the brain. Although the precise cause is unknown, FTD is thought to result from abnormal accumulation of misfolded proteins, which disrupt, and eventually kill, brain cells. Patients with Frontotemporal degeneration experience a variety of clinical symptoms, ranging from behavioral impairments to language or motor dysfunction.
The conference doubles as an opportunity for caregivers to meet and share stories about the caregiving experience. This year’s keynote speaker, Diane Fehon, will share her experience caring for her husband, Bill Fehon, who was diagnosed with FTD in 2009. A teacher for 32 years, Bill created the recipe for Bill’s Best Organic BBQ Sauce in the early 1990s. After Bill was diagnosed with FTD, he was no longer able to make the sauce. Diane has since led the effort in running her husband’s business. Bill’s sauce is now sold in many grocery stores across the country, with 10 percent of profits from all sales going to the Association for Frontotemporal Degeneration in hopes of finding a cure.
Diane is one of three FTD caregivers featured in “Through the Eyes of the Caregiver” a short film that will premier during the conference. Another FTD caregiver featured in the film is Jamie Arking. Upon learning that his father had FTD in 2013, Jamie came to Penn Medicine for genetic testing and genetic counseling to learn his risk for having an inherited form of FTD and to understand his chances for possibly passing the gene down to his children.
Both Jamie and Diane will be available for individual interviews before and during the conference.
Last year’s caregiver conference welcomed 200 attendees from 17 states across the country, including some who traveled from as far as Las Vegas, Nevada.
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WHERE:
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Smilow Center for Translational Research
(Enter through the Perelman center for Advanced Medicine)
3400 Civic Center Boulevard
Philadelphia, PA 19104
Contact Queen Muse upon arrival in the lobby for escort to the conference
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WHEN:
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Friday, May 12, 2017
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8 AM – 4:30 PM
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Select conference highlights for media:
8:30 AM Opening Remarks and Welcome
- Murray Grossman, MD, EdD, Penn FTD Center
- Susan L-J Dickinson, MS, CGC, Association for Frontotemporal Degeneration
- William Reiter, Alzheimer’s Association, Delaware Valley Chapter
- Kathryn Jedrziewski, PhD, Penn Institute on Aging
8:45 AM Frontotemporal Degeneration and Progressive Aphasia
9:15 AM Amyotrophic Lateral Sclerosis (ALS) 101
- Colin Quinn, MD, MSPT, assistant professor of Clinical Neurology, Penn Medicine
9:45 AM Corticobasal Syndrome & Progressive Supranuclear Palsy
- H. Branch Coslett, MD, William N. Kelley professor in Neurology
10:10 AM Morning Break
10:25 AM Caregiver Strategies for Symptom Management
- Anna Yung, BSN, RN, Clinical Research Nurse Coordinator, Penn FTD Center
10:50 AM Stimulating Conversations: Characterization and Treatment of Aphasia with Noninvasive Neuromodulation
- Roy Hamilton, MD, MS, assistant professor in Neurology
11:15 AM Genetics of FTD Spectrum Disorders
- Kaylee Faulkner Naczi, MS, genetic counselor, Penn Medicine
11:45 AM What About the Kids & Teens?
- Alison Lynn, MSW, LSW, assistant director of Care Programs, Penn Memory Center
12:05 PM Video Premiere: Through the Eyes of the Caregiver: The Penn Frontotemporal Degeneration (FTD) Center Video/Short Film
12:20 PM Lunch
1:15 PM Keynote Presentation: What time is it when an elephant sits on a fence?
- Diane Fehon, FTD Caregiver
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