Hearing two people in the NYC support group I go to, mothers who have young children and are struggling with what to tell them, got me to post again this info re the AFTD web site developed for kids and teens.
“It is designed to be a nurturing, understanding and safe environment for your kids to visit to read about FTD, find coping strategies, engage around positive activities and hear from other kids who know FTD firsthand. We hope that they will feel less isolated and more empowered by visiting the site and finding they are not alone in their experiences with FTD.”
I saw this on the AFTD site:
“AFTD is pleased to announce a new Facebook Group specifically for those in their 20s and 30s who have a family member or friend with FTD. Recognizing that many of the available FTD supports and resources focus on spouses or young children with a parent affected by FTD, AFTD’s Young Adult Facebook Group hopes to serve as an online forum and gathering place specifically for young adults.
This is a “secret” Facebook group; therefore, only members can find the group and see posts. If you would like to join, please send an email to firstname.lastname@example.org and include the email address you used to set up your Facebook account.”
With 248 attendees, this was the largest gathering of FTD caregivers, people affected, families and medical professionals to date.
I attended the conference for the first time and thought it was wonderful. Great info, well run, met people who I had only talked to on the phone and familiar faces from the support groups I go to.
The AFTD hosted its Education Conference and Annual Meeting in White Plains, NY, on March 14, 2014.
Below are links to some of the presentations.
Dr. Ted Huey of the Taub Institute of Columbia University gave the clinical address entitled FTD Overview, Trends and Developement.
Click their names for the slides on the genetics presentations from Jill Goldman and Nadine Tatton.
The annual meeting slides presented by AFTD’s Executive Director, Susan Dickinson are also available for viewing.
Robert Bazell, former NBC Nightly News chief science and health correspondent, gave the keynote address: Making Yourselves Heard. Click here for the conference program.
You must visit the AFTD site.
They have an Introduction, The Basics of FTD, an FAQ answering questions like; How do I find a doctor who knows about FTD? How do I find a support group for FTD caregivers? What should I expect for my family member over the progression of the disease? and a Helpline.