The Association for Frontotemporal Degeneration

Follow us on Instagram for more #MessagesOfHope https://www.instagram.com/theaftd/

If you were unable to attend last week's AFTD Educational Webinar, it is now available to view on our website. In "FTD and Genetic Testing A Practical Approach, Jamie C. Fong, MS, CGC, a Certified Genetic Counselor and Assistant Professor with Baylor College of Medicine, outlines a practical approach to better understanding how FTD may impact you or your family. She also facilitates a discussion with former FTD caregiver and AFTD Board Alumna Debbie Fenoglio about her family’s experience with genetic testing in someone with FTD: https://bit.ly/3kLYcc6

The doctor took one look at the scan and diagnosed him with bvFTD. He said that I should place my dad in a facility ‘or he will end up in jail.’ My dad was just 62 years old, and I was in a state of disbelief and denial. My denial was short-lived, however, as it quickly became apparent that I must take away dad’s driver’s license and get him 24/7 care. We simply could not risk any more arrests or financial devastation. In this month’s issue of Help & Hope, Christina shares... the challenges she has faced on her dad’s FTD journey, as well as her own journey to find a facility where her father would receive excellent care. Christina eventually found a senior living center where the staff communicates well, and constantly asks questions to improve their understanding of FTD. She feels it is her life’s mission to help others impacted by FTD who are facing the same difficult decisions: https://bit.ly/31ybjGs See more

A huge thank you to all of our fundraisers, donors and participants who helped cook up a successful 2020 Food for Thought campaign! Hosts across the country (and world!) were able to raise over $100,000 (and counting) sharing FTD education through creative virtual events while cooking up delicious dishes. Kyle Jackson participated in the campaign by hosting a virtual cooking class, teaching participants how to make a mouth-watering mushroom risotto. Throughout the tutorial, Kyle shared his personal FTD story and raised $2,640 in support of AFTD’s mission. Thank you to Kyle and everyone who got involved this year!

Good news: Limited registration is still available for Thursday’s educational webinar: "FTD and Genetic Testing A Practical Approach. Jamie C. Fong, MS, CGC, a Certified Genetic Counselor and Assistant Professor with Baylor College of Medicine, will outline a practical approach to better understanding how FTD may impact you or your family. She will also facilitate a discussion with former FTD caregiver and AFTD Board Alumna Debbie Fenoglio about her family’s experience with genetic testing in someone with FTD. Register now to join us on Thursday: https://bit.ly/37jFbtN

Primary progressive aphasia (PPA) is an FTD disorder that affects the parts of the brain responsible for speech and language, resulting in the gradual loss of ability to speak, read, write, or understand what others are saying. Researchers divide PPA into three subtypes, and in our fall issue of Partners in FTD Care we examine the case of Tami W., who was diagnosed with logopenic variant PPA (lvPPA), which is mainly characterized by difficulty with word-finding, resulting in frequent pauses while speaking. Click here to explore how ongoing engagement with knowledgeable professionals can help persons diagnosed with PPA and their care partners adapt to symptoms as they progress, and identify means of support: https://bit.ly/3mq91kE

FTD can be an isolating disease, and that has never been truer than during the COVID-19 pandemic. We believe that people living with FTD should be well supported on their journey, and in this month’s issue of Help & Hope we suggest resources, forums, and peer support systems that exist to help persons diagnosed connect with others who understand what it is like to live with FTD: https://bit.ly/31ybjGs

If you’ve not yet completed the anonymous survey for the Patient-Focused Drug Development (PFDD) meeting that AFTD is hosting, we hope you will consider sharing your perspective before the survey closes at the end of the month. The PFDD meeting is a unique chance to speak directly to regulators with the U.S. Food and Drug Administration to share what is most important to you regarding potential treatments and participating in clinical trials. Feedback from the survey will help inform the meeting’s agenda. Together, we can have a direct impact on the future course of FTD therapeutic development. Your involvement is essential. Take the FTD Insights Survey now: https://bit.ly/33Ebq4G

New AFTD-funded research published in Nature provides important insights into the structure of the C9orf72 protein, which when mutated, is recognized as the most common genetic cause of both FTD and ALS. The results of the study, which was led by AFTD Basic Science Postdoctoral Fellow Ming-Yuan Su, may aid in future drug development. While additional research is still needed to further understand the mechanisms by which C9orf72 becomes toxic in FTD, by knowing more about the protein’s role, researchers can target drugs to stabilize its structure, improve functionality, or eliminate unnecessary components: https://bit.ly/2Hpab0q

In an article published in the Minden Times, AFTD volunteer Amanda Dawson shares her family’s FTD story, and explains how the #FTDhotshotchallenge is helping to raise awareness and increase hope for a future free of FTD. Dawson’s father had a successful career as a doctor, before exhibiting symptoms of behavioral variant FTD that eventually led to the loss of his medical license. Earlier this year, Dawson joined other AFTD volunteers in organizing the #FTDhotshotchallenge, i...n which participants share a video of themselves taking a shot of hot sauce and explaining their connection to FTD. Viewers are encouraged to make their own video, and to donate in support of AFTD’s mission. So far, the campaign has raised over $106,000. We have all been through hell with this disease, but we are rising up from the ashes, stronger because of all that we all have in common: a deep love for our families and a drive to make life better for the next generation of people with, and touched by, FTD. And if there’s just some little morsel of hope out there, I want to help connect people to that hope: https://bit.ly/31oSmWl

FTD and Genetic Testing A Practical Approach: in our upcoming AFTD educational webinar on October 29, Jamie C. Fong, MS, CGC, a Certified Genetic Counselor and Assistant Professor with Baylor College of Medicine, will outline a practical approach to better understanding how FTD may impact you or your family. She will also facilitate a discussion with former FTD caregiver and AFTD Board Alumna Debbie Fenoglio about her family’s experience with genetic testing in someone with FTD. Limited registration is available for the presentation, but our webinars fill quickly, so secure your spot today: https://bit.ly/37jFbtN

AFTD is hiring a Digital Content Writer, who will be directly responsible for the daily creation of content for AFTD’s digital platforms, focused primarily but not exclusively on web and e-blast content. They will collaborate with members of AFTD staff across departments to ensure that AFTD digital assets reflect the most up-to-date content and our emergent knowledge of FTD. Click here to learn more and to apply: https://smrtr.io/4tYss

This week’s volunteer spotlight shines on Mike Dircksen from South Dakota. AFTD’s mission is personal for Mike his wife, Pamela, lived with FTD. As a dedicated volunteer, Mike facilitates a support group and shares critical awareness in his community through table settings, presentations about the disease and hosting a Meet & Greet. He’s also an active participant in Charity Miles and has logged over 500 miles! Please join us in thanking Mike for his commitment to advancing AFTD’s mission! If you’re interested in joining our National Volunteer Network, click here to learn more: https://bit.ly/2SWpCQq