As the Director of Caregiver Support Services and Public Relations for the MGH Frontotemporal Disorders Unit, it is my happy job to coordinate community events and fundraisers. A family-friendly bowling event, an education day, or even a summer concert for research participants and their families.
I love event planning. I imagine the event from the attendee’s eye and work to make it is as easy to navigate as possible. It energizes me to know that I can help bring people together so they can cope with the unexpected challenges that FTD and dementia can throw their way. And, I like the opportunity to plan events that are beautiful, fun and happy – I think our families deserve the opportunities to make new memories of joy amidst the difficult journeys they are traveling.
Due to the intense health crisis brought upon our global community, in-person community events are cancelled. No registration tables will need to be set up and no tote bags will need to be ordered. But, community isn’t cancelled. I have had the privilege of working with my team of AFTD support group leaders and staff in the MGH FTD Unit to pull together Virtual Supports that include online support groups and webinar-based Community Forums that bring together community experts to share knowledge that will be relevant to our community at this time.
I wanted to call attention to the fact that our FTD Community may be feeling lonely today. April 17, 2020 was supposed to the be AFTD’s annual education day in Baltimore. I was honored to have been asked to be a panel presenter and was looking forward to connecting with so many members of our national FTD community. This morning I ran our MGH FTD Unit Community Forum Friday event with Nicole McGurin from the Alzheimer’s Association and Matt Sharp from the Association for Frontotemporal Degeneration. We talked about the ways that these two organizations are still here for us today. A pandemic isn’t stopping them from offering education, support and connections.
It moved me to think about how much I have benefitted from past education days and I wanted to share a piece that I wrote about the 2016 AFTD conference. Remembering this experience filled me with so many emotions, the biggest one is faith. Faith that we will be back together again. Back in the fight against FTD. Back with resilience and hope that the cure of tomorrow is not so far from the care of today.
*The following essay was written in May of 2016. In January of 2018, Susan passed away after leaving an immeasurable mark upon the world. I am as moved today as I was in 2016 by her words of hope, inspiration and love.
Reflect, Renew and Explore: AFTD Conference 2016
When I arrived in Minneapolis to attend the 2016 Association for Frontotemporal Degeneration’s (AFTD) Annual conference, I had expectations. I expected to see old friends and make new ones. I expected to hear scientific updates, an annual report from AFTD and a call to action for volunteerism. I even expected spring weather, but it turns out that Minnesota is still cold in May. And then Susan Suchan took the stage.
Susan is a volunteer, advocate and patient. She is living with Primary Progressive Aphasia (PPA) and raising her voice for the FTD community. As she welcomed the audience of over 300 patients, caregivers, medical professionals, industry experts and advocates she issued a challenge and a call to action “Let’s make the lived experience worthwhile.” Her powerful message made me think about my own message of the power of the authentic voice. But, I realized that Susan’s words had a much greater meaning.
More Than Words
For many in the FTD community, the disease itself muffles their ability to raise their voices. Patients living with behavioral variant FTD may lack the insight to express the impact of their condition on their daily lives. Those living with advanced PPA may lose the very words needed to express the journey. Clinical experts and researchers may seem to speak a different language than families when they describe FTD. But, they all have a lived experience. At a time when FTD thinks it is unstoppable, when the cure of tomorrow has not yet met up with the care of today, we must learn how to understand each viewpoint of the lived experience.
Luckily, AFTD was up to the challenge. This year’s conference offered the opportunity to learn from clinical care and research experts, to register our experience for the first time in an official way, and to make powerful connections with one another. By exploring the lived experience through the eyes of both presenters and attendees, it validated the importance of each role in our fight for a new conclusion to FTD’s story.
Becoming A Citizen Scientist
Brad Boeve, MD, Chair of Behavioral Neurology in Minnesota’s own Mayo Clinic brought his clinical expertise to the day to help us understand the pathology of FTD. For new and experienced families, a greater understanding of the disease process can help with the practical aspects of daily interactions, access to public aid for care and long term planning. It can also inform family conversations about genetics, medical needs and opportunities for research. The care of today is critical. Yet, our community also needs an eye toward the cure of tomorrow.
David Knopman, MD, Professor of Neurology at the Mayo Clinic, presented on two large federally funded projects for FTD research; ARTFL and LEFFTDS. Advancing Research & Treatment for Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) are combining to form the first multi-center effort to pool resources across major research centers in North America. The goals of the study are to learn more about the biology of FTD, to improve diagnosis and to facilitate efforts to development treatment for FTD. Fifteen sites across the country, including Massachusetts General Hospital, are participating in the initiative.
In order for this research to meet its goals and make a difference in science and healthcare, it is not just medical and scientific professionals who must play a pivotal role. Each patient and family member that participates contributes essential information that cannot be replicated through any other model. As lay people, we have the power to become Citizen Scientists, contributing information and expertise that is irreplaceable. It is one of the most powerful examples of our need to come together as a community to solve the problem of FTD.
Registering the Lived Experience
Nadine Tatton, AFTD’s Scientific Director remarked “In the world of FTD, every story advances the sciences, starting with yours.” In order to fully understand how FTD affects patients and families, a centralized repository of recorded personal experiences is needed. The FTD Disorders Registry is a secure electronic database that collects information from people diagnosed with any of the FTD disorders and from their caregivers and family members. Dianna Wheaton, Director of the FTD Disorders Registry, is encouraging everyone whose lives have been impacted by FTD to join the Registry. The registry will provide a research-ready patient community for scientists and a resource for learning about the natural history of FTD that can be shared within the community. All research participant information will be made anonymous by removing names and other personal identifiers and replacing them with an ID code to protect identify.
Go to FTDRegistry.org to learn more about becoming part of the community working to end FTD today.
Leading the Way
AFTD volunteers flew in a day early to engage in leadership training and support group facilitation workshops. AFTD Board Members stayed a day later to strategize the year ahead, enhancing the national and global network of our FTD community while sharpening the focus on our shared goal of finding a cure for FTD. The AFTD community is made up of tenacious, caring, dedicated individuals and it shows in every event, program and initiative they lead.
I have attended AFTD conferences in Boston, Philadelphia, Salt Lake City, San Diego, Vancouver, British Columbia and even across the pond in Manchester, England. At each conference, AFTD unites local, national and international members of our FTD community. They are sprinkling the nation with a trail of breadcrumbs that lead us all back to one another. Creating connections is the action step that must be taken and AFTD is a master connector. We may not have a cure for FTD, but we have a cure for the loneliness and isolation that many experience while living with FTD and that is something we can fix. Today.
If you want to be a part of AFTD to make a connection, sprinkle a few breadcrumbs or take action today, go to www.theaftd.org.
Warmth in Words
Our conference closed where it began; with the patient. Susan Suchan took to the podium one more time to summarize our day. Susan remarked that when she awoke that morning, she found the weather to be cold, rainy and gray. She worried that the conference attendees who had traveled to be here might feel unwelcomed by the dreary Minneapolis weather. But, when she arrived in the main conference room she saw bright faces, people greeting each other with big hugs and smiles of delight. She saw new connections being made. She realized that no matter how cold it was outside or how hard the rain fell, there would be warmth in our conference room today and that was a memory that we could all take home with us. That was something that wouldn’t change.
As Susan delivered her closing remarks, her words were broken. Yet, her message was so strong and clear that no translation was required. FTD would bring challenges, grief and sadness into our lives. But, we would bring light and love.
That was something that FTD couldn’t take away.
When I woke up the next day to catch my flight, Minneapolis was 34 degrees, cold by most standards. But as I rode to the airport, all I could feel was the warmth of the sunshine.