AFTD News Summer 2019

Volume XVI, Issue 2 Summer 2019 60 Minutes Brings FTD Awareness to Millions of TV Viewers On May 5, the venerable CBS Miller, MD. Dr. Miller, who leads a said. “But given that it does, I’m grateful news program 60 Minutes aired a robust FTD program at the University for the chance to have met these people segment on FTD, bringing newfound of California San Francisco and is a and shared their stories with our awareness to a television audience founding member of AFTD’s Medical audience.” of millions. Advisory Council, was the medical Upon airing, the story had an Entitled “The Cruelest Disease You’ve expert featured in the piece. immediate and measurable impact on Never Heard Of,” the 14-minute FTD awareness – a testament to the segment introduced viewers to “I wish the illness didn’t exist,” said CBS’s Rome importance of sharing FTD stories. the symptoms of FTD and profiled Hartman. “But given that it does, I’m grateful for AFTD’s website had its highest-traffic several people whose lives have the chance to have met these people and shared day ever on May 5; May 6 was not far been touched by the disease. their stories with our audience.” behind. All told, nearly 89,000 users accessed theaftd.org in May 2019, Rome Hartman, lead producer nearly five times the number of users of the segment, said that he was AFTD also connected producers with from the previous May. (See charts on compelled to tell the story of FTD the Very Rev. Tracey Lind, who was page 8.) “partly because of how little known diagnosed with primary progressive aphasia in 2016, and Amy Johnson, a Inquiries to AFTD’s HelpLine also rose it is, and partly how devastating the following the broadcast. AFTD staff mother of four young children whose symptoms are – and how difficult it provided practical, compassionate is to diagnose.” husband has behavioral variant FTD, and medically accurate information in both of whom were also profiled in the response to 351 HelpLine calls and emails AFTD provided the show’s producers story. with background information on in May 2019, up from 210 HelpLine cases in May 2018. FTD and connected them with Bruce “I wish the illness didn’t exist,” Hartman (Continued on page 8) INSIDE THIS ISSUE More than 600 Take in 2019 Spotlight/ Kimberly Pang Torres........2 AFTD Conference Held on May 3 in Los Angeles, AFTD’s who identified as having FTD. Notably, News Briefs.........................2 2019 Annual an additional Education 300 additional 3 Summer Appeal.................. Conference people followed provided along with the Postdoc Fellowships.........5 the latest conference developments in live online. For ADRD Summit.....................5 FTD science and the first time, Donations..........................6-7 offered practical AFTD ensured information that the 60 Minutes (cont.)...............8 about the conference realities of would be Helping Hands.....................9 living with the professionally disease. Actors Lara Jill Miller and Martha Madison broadcast Volunteer Appreciation.......9 to members of our More than 330 people were in community throughout the country 10-11 The AFTD-Team.......... attendance, including 38 registrants and the world. (Continued on page 4) 2 The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 Spotlight on…Kimberly Pang Torres, AFTD Board of Directors Jackie Pang was diagnosed with FTD in “I’m so thankful that I stumbled upon in Jackie’s honor. “We did not expect 2017, less than a year after AFTD’s website,” she said, the support we got from family, friends, her daughter, Kimberly “because that was the best people we barely even knew,” Kimberly Pang Torres, first source of information about said. Team Jack Attack’s efforts at the noticed changes in her FTD – and it was presented two Philadelphia Marathons combined to behavior. The diagnosis simply, so that we could raise $61,000 to support AFTD’s mission; understandably rattled understand it.” a separate Food for Thought event raised the family: “We knew more than $3,000. this was not going to The Pang family has since been As a new member of AFTD’s Board, be a good prognosis for heavily involved in fundraising Kimberly said, “I’m going to stay Mom,” said Kimberly, to support AFTD’s mission. passionate about fundraising.” She also who joined AFTD’s Board Kimberly recalled her reaction hopes to further AFTD’s work toward in May 2019. “We know to her father, Joe Pang, telling creating greater public awareness of FTD. how this is going to end.” her he was going to participate Kimberly Pang Torres in an 8K – “My dad is definitely In considering whether to join AFTD’s But Jackie’s FTD spurred not a runner, so for him to say Board, Kimberly asked herself whether she the family into action, not resignation. he’s participating in an 8K, I knew he had time for it – she has a busy full-time “You can focus way too much energy on was serious and that I had to participate job at Johnson & Johnson, and supports being sad,” Kimberly said. “I had many too!’” Joe was a family rough moments of tears, sadness, and determined “I know that other people will be able to find hope business. But anger, and still do. But as a family, we to finish the and community through AFTD,” Kimberly said. “That she quickly made a choice that we would focus our race, saying he was the most important thing for me and my family.” realized that energy on the things we can control would crawl to “I have to have instead of the things we cannot change. the finish line if necessary. time to do this,” she said. “I care so much If we can share our experiences to help about AFTD and its mission. I know that other families through their journey -- Joe and the rest of the Pang family came other people will be able to find hope that is what we are going to do.” out in full force to the Philadelphia and community through AFTD. That was Marathon in 2017 and 2018 – members of the most important thing for me and my Like most people, she had never heard their race team wore matching t-shirts family. The sense of not feeling so alone of FTD until it directly affected her life. bearing the moniker “Team Jack Attack” – it makes the journey just a little easier.” AFTD News Briefs AFTD Adds New Staff U.S. News & World Report Article Focuses on FTD In June, Deena Chisholm became AFTD’s Education Program On April 18, U.S. News & World Report brought attention Manager and will work to provide FTD education to healthcare to FTD with a broad overview of the disease, including professionals. She is experienced in developing and implementing quotes from AFTD CEO Susan L-J Dickinson. In the article, health education, tools, programs and interventions that Dickinson is quoted speaking about FTD’s symptoms and promote engagement as well as optimal health and wellness. how they differ from those of Alzheimer’s, the difficulties In her career Deena has worked to develop and implement in getting an FTD diagnosis, and the likelihood that several new initiatives and research focused on dementia care, current estimates of the number of FTD cases in the U.S. violence prevention, medical health education and health equity. (around 50,000-60,000) represent an undercount. She received her Masters of Public Health from West Chester University. Additionally, Maggie Cavanagh joined AFTD in June Taking AFTD’s National Volunteer Program to the as Grassroots Events Coordinator, working with Special Events Next Level Manager Bridget Graham. Her work will focus on AFTD’s Food The AFTD Board and staff recognize the important role for Thought, With Love, and Race Season campaigns, as well as the volunteer network plays, and will continue to play, independent events and Facebook fundraisers. She received a B.S. in ensuring AFTD’s overall success in addressing our in mass communication with a focus in advertising from Towson mission. As a result of the goals set forth in the new University. Strategic Plan, AFTD will see an increase in volunteer engagement in local communities, working to create Additions to the AFTD Board a stronger presence through several initiatives. Plans AFTD is pleased to welcome Kimberly Pang Torres to our Board are in the pipeline to support a new volunteer program of Directors (see above), and to welcome back Jary Larsen. Jary structure as we prepare for growth. We plan to launch was an AFTD Board member from 2010-2017, and served as Board the newly designed volunteer program this fall – stay chair from 2013-2016. tuned for more details. The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 3 4 The Association for Frontotemporal Degeneration Volume XVI, Issue 2: Summer 2019 (Continued from page 1) Conference Keynote Speaker AFTD Conference... Martha Madison “AFTD’s Annual Education Conference Strategic Plan that was is a rich resource for knowledge and approved by the AFTD AFTD CEO Susan L-J Dickinson details connecting with others – and we Board in December, and AFTD’s 2019-2022 Strategic Plan. understand that for many people will guide our work over facing FTD, traveling to the conference the next three years. in a given year may not be an option,” Actor, producer and said AFTD Senior Director of Programs FTD care Sharon Denny. partner Martha “Livestreaming AFTD broadcasted the 2019 Education Madison provided an easy Conference to members of our community delivered the way to ensure throughout the country and the world.

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