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Workbook for Caregivers = Donations to AFTD

Robin Albright wrote and illustrated “12 Tiny Well-being Tips for Caregivers” to help caregivers take care of themselves, so that they can take care of others. The interactive book not only offers self-care tips, but also coloring pages and resources. Being a caregiver herself for more than 10 years, Robin wants to “pay it forward” by donating a portion of each book sale to AFTD. For more information and to purchase the book, please visit Robin’s website: robinalbright.com

AFTD Education Conference Covered in Connection Newspapers

AFTD’s 2017 Education Conference was the focus of an article published on the website of Connection Newspapers on May 9. The article said that the conference “shed some light on the disease and offered support to those affected by FTD.” It mentioned the morning talk given by Dr. Chiadi Onyike, director of the Johns Hopkins Frontotemporal Dementia and Young-Onset Dementias Program, who discussed the science behind FTD, and the symptoms of the disease. The full article is available on the Connection Newspapers website.

Hundreds Impacted by Young-Onset Dementia to Gather in Baltimore for AFTD Conference

AFTD will hold their 2017 education conference in Baltimore, MD at the Sheraton Inner Harbor Hotel, on Friday, May 5. Each year, AFTD hosts an annual conference so that people affected by FTD can meet in person, connect and gain access to important resources and information. FTD caregivers, persons diagnosed, researchers and medical professionals all gather to make this event of significant importance for all affected by FTD. The full press release can be seen here.

Share Your Stories, Advance FTD Science with the FTD Disorders Registry

The FTD Disorders Registry, the first-ever online registry designed to bring together persons diagnosed with frontotemporal degeneration, their caregivers and family members, has officially launched. Accessible at ftdregistry.org, the Registry gives people affected by FTD the opportunity to teach researchers about the various FTD disorders by securely sharing their stories, thereby informing their work toward developing treatments and, ultimately, a cure. In return, Registry participants will receive recruitment notifications for upcoming clinical studies as well as research news updates. AFTD and the Bluefield Project to Cure Frontotemporal Dementia co-founded the registry with generous support from the Rainwater Charitable Foundation’s Tau Consortium program. For more information, visit ftdregistry.org.

Monty Python Member’s Family Speaks Up for FTD Awareness

The family of Monty Python member Terry Jones granted an interview to the British newspaper the Observer on April 16 to help spread awareness of FTD. Jones was diagnosed with PPA in 2015; today, his speech is limited to only a few words. His daughter, Sally, tells the newspaper that while her 75-year-old father loves spending time with old friends, “he no longer has the ability to tell them how pleased he is to see them.” One of those friends — fellow Monty Python member Michael Palin — recalled the early days of Jones’s diagnosis: “He was very matter of fact about it and would stop people in the street and tell them, ‘I’ve got dementia, you know. My frontal brain lobe has absconded.’” Click here to read the full interview.