The Gateway
In This Issue
What's New
Caregivers' Corner
Medical Momentum
The AFTD-Team
Words of enCOURAGEment

Donate Now

 

Your gift means so much. Click here to make a donation to AFTD today. 

Quick Links
Join Our List to Receive The Gateway!

Join Our Mailing List

Looking Ahead

Please mark your calendars:
AFTD's next Annual Education Conference will be held May 13, 2016 in Minneapolis! 

 

Kickoff -
National Network of FTD Support:
A forthcoming webinar will spotlight AFTD's new affiliation process for support group facilitators. This process will offer a way for facilitators to add value for support group members through FTD-specific trainings, resources, ongoing assistance and a forum for exchanging ideas. If you have interest in attending please email Bridget Moran at bmoran@theaftd.org.

 

 Young Adult Facebook Group
AFTD has a young adult Facebook group for people in their 20s and 30s who have a family member or loved one with FTD. If you meet the age criteria and wish to join this private group, please email
youngadults@theaftd.org and include the email address you used to open your Facebook account. Please note that AFTD will not use your email address for any reason other than to invite you to join the group via Facebook.

 
Did You Know?
AFTD has a phone support group for people diagnosed with FTD? For more information, email info@theaftd.org or call the AFTD HelpLine at 1-866-507-7222.
 

 

Issue: # 22
August 2015
What's New
Be Part of AFTD's Growing Impact

 

resume.jpg
To support its mission and vision, AFTD will expand to a staff of 15 by year's end!

Driven by the vision established by our 2015-2018 Strategic Plan, AFTD is growing significantly and is currently hiring for four open positions: an Events Coordinator (dedicated to grassroots events), a Communications Manager, a Research Manager, and a Registry Manager.

 

Do you have the skills and drive needed for success in these roles, or do you know someone who does? Find out more about these openings by accessing this link: www.theaftd.org/about/our-staff 

 

Please share this link within your networks, and help us to get the word out about exciting new opportunities at AFTD!

 

Help Put Your State on the Map!
 

While providing guidance and support for FTD caregivers and diagnosed persons, this issue of The Gateway also offers two ways to play an active role in the fight against FTD. First, Medical Momentum offers information on clinical networks offering new opportunities for our community to participate in research. Second, the AFTD-Team section below provides detail on how you can help put your state on the map as AFTD seeks to stage Food for Thought events in all 50 states to mark the first World FTD Awareness Week, October 4 through 11, 2015!
 

To date, 19 states in the USA are joining the Food for Thought campaign. As the event goes global, help put your state on the map!

 

Caregivers' Corner 

Coordinating Therapies and Exercise
Are Vital to PSP Care

 

bicycle-sm.jpg "Unexplained falls" are common in progressive supranuclear palsy (PSP), a rare movement disorder that is considered one of the FTD disorders. People living with PSP may also experience difficulties with swallowing or producing speech, and cognitive impairment. These symptoms pose distinct care challenges.

 

As with other forms of FTD, medications do not currently address PSP symptoms effectively. Therefore, the best ways to help those with PSP remain active and maintain quality of life involve collaboration with physical therapy, occupational therapy, and speech-language pathology professionals.
 

Exercise - the only treatment that seems to slow progression of the disease - is especially important for individuals living with PSP. Modifications must be made to any exercise regimen for someone with PSP, due to the extreme risk of falls. Finding a physical therapist or fitness trainer familiar with PSP can be of great assistance; if this proves challenging, finding one who is knowledgeable about Parkinson's is also a good choice.

 

If you would like to learn more about care strategies for PSP, you won't want to miss the newly published Partners in FTD Care summer issue. It features practical information and rich examples from two guest collaborators, former caregivers who know first-hand the journey with PSP. 

Medical Momentum

Clinical Networks Offer Opportunities for Participation in Research

 

researcher_science_tube.jpg

Participating in research is a crucial way to help fight FTD, and thanks to federal investment, opportunities are expanding to participate in research across the country.

 

Last fall, the National Institutes of Health (NIH) made a multi-year $30 million investment convening 22 clinical centers across the U.S. and Canada, to establish an FTD-focused clinical trial network.

Through this network, two related initiatives now offer new opportunities for participation in research:

 

  • ARTFL (pronounced "artful," Advancing Research and Treatment for Frontotemporal Lobar Degeneration) will enroll 1,500 patients and family members to foster development of biomarkers and clinical trials targeting FTD. Over the course of one year, individuals will participate in two evaluations that will include medical exams, clinical assessments of cognition and functioning, questionnaires and surveys, and biological specimens.
  • LEFFTDS (pronounced "lefties," Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects) will target familial FTD, enrolling 300 participants from families with known mutations in one of the three genes most commonly associated with FTD (MAPT, GRN and C9ORF72). The 300 LEFFTDS participants will be seen annually over three years, for evaluations including biological samples and brain imaging. 


 

Both initiatives will enroll symptomatic and asymptomatic family members; LEFFTDS will target families where a known mutation has been found in one of the three targeted genes. Please visit AFTD's clinical trials and studies pages for details.

The AFTD-Team

A Food for Thought Event for You...

 

Food for Thought, AFTD's grassroots campaign, offers a great way to increase FTD awareness and raise funds for research and a cure. To be held this year during the first World FTD Awareness Week (October 4th-11th 2015), Food for Thought events require only two things - food and some form of FTD education.

Food for Thought liaison Elaine Rose, pictured enjoying a Hat Party with her husband Bob.

 

2015 Food for Thought liaison Elaine Rose joined the campaign for the first time in 2014. She used her husband's favorite food as her inspiration and developed a social-media-driven event: Eat Ice Cream for Bob. "People held ice cream parties and posted photos of their sundaes and banana splits. And of course, many contributions were made. It was so heartwarming and meant so much to us. Now that Bob has passed, I'm only too happy to help make FFT a success."

 

Whether you like small gatherings, big get-togethers, or connecting online, there are many different ways to be part of AFTD's Food for Thought campaign. Get started by filling out the Food for Thought contact form and put your state on the map!

Words of enCOURAGEment
Caregiver Shares Importance of Finding Respite

Bryna Sarokin's journey caregiving for a spouse with FTD began in 2006. Over time, the challenges of being full-time caregiver to her husband, Seymour, left her depleted. She decided to apply for a respite grant, and the letter awarding her a Comstock Respite Grant arrived at just the right time.

 

" I think each person put into the position of caregiver has to discover
what works for them.
For me, simple meditation has helped a great deal, as has a little self-indulgence."
- Bryna Sarokin

 

"Caregiving is such a lonely job that receiving acknowledgment and validation via the Comstock Grant was very important," Bryna said. She used the grant to enjoy a weekend away with her daughters and adult granddaughters. "We talked about all sorts of things and, while they did strenuous stuff, I read and felt the accumulated tension just sliding off - it was almost tangible."

 

Respite also afforded her some time for self-reflection. "I think each person put into the position of caregiver has to discover what works for them," said Bryna. "For me, simple meditation has helped a great deal, as has a little self-indulgence."

 

Recently, Bryna applied for and received a third grant, which she plans to use for a few hours of respite across a longer span of time. "Leaving the house with a free mind is so important, and coming home relaxed, happy and renewed certainly is to my husband's advantage."

 

Comstock Respite Grants help full-time, unpaid caregivers arrange short-term daytime or overnight care for loved ones diagnosed with FTD. Caregivers decide how to best use the funds based on their situation and needs. To learn more about the program, click

here.

Like us on Facebook   Follow us on Twitter