The Gateway
In This Issue
What's New
Care and Support
Medical Momentum
The AFTD-Team
Words of enCOURAGEment

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AFTD Meet & Greet in Denver, Colorado 

Join AFTD Volunteer Colleen Seymour and AFTD Southwest Regional Coordinator Volunteer, Kathy Urban to connect with others in your area whose lives have also been affected by FTD.  Learn more about AFTD events, programs and resources, and discover how you can get involved while sharing time with others in your community!

When: Saturday, February 18th, 2017
Time: 10:00 a.m. - 12:00 p.m.
Where: Ross-Cherry Creek Library,  305 Milwaukee Street
Denver, CO 80206
Phone: 720-865-0120

Feel free to print and share  this flyer  with your friends and family.

Please RSVP to Kathy Urban at  kurban.aftd@gmail.com by February 15th.

Openings in Telephone Support Groups

AFTD currently has space in three of our phone support groups: a parents group, for caregivers that also have children under 18 in the home; a group for male caregivers; and our FTD/ALS support group. 

Connecting with others who understand FTD can create a lifeline for emotional support, facilitate practical problem-solving and lead to the discovery of new resources. If you would like to join any of these groups, please contact Bridget Moran, Support Services Manager, at 267-758-8653 or bmoran@theaftd.org

We know the feelings of isolation caregivers of loved ones with FTD can have and how helpful it can be to talk to others experiencing similar emotions. We hope you join us!

We Value Your Insight

Through The Gateway  and other resources, AFTD will be sharing tips, troubles, triumphs and challenges from our community. Have some to offer? E mail:  info@theaftd.org .  
Issue: #31
February 2017
 What's New
 

AFTD's With Love campaign is a show of force -- the force of love -- against FTD. 

AFTD's 6th Annual With Love Cam paign is an opportunity to pay tribute to a loved one affected by FTD by raising vital funds and spreading awareness. Lynda Ares from Huntsville, Alabama is participating in the campaign this year to honor her husband, Mario. Here's her story of love:  

Lynda and Mario Ares
My husband, who is 60, and I had so many plans. Those plans fell through when he was diagnosed with FTD in 2009. Mario, a 22 year veteran, served in The Old Guard and spent 12 years at the White House, serving 3 Presidents. Mario was a Transportation Coordinator on Air Force One and had an AMAZING career. After his diagnosis, he was able to stay at home until November 2015. Two weeks after having to be placed into an Assisted Living Facility, he was sent to a geri-psych facility for "behavior issues." 
Mario was given so many anti-psychotic medications he became almost comatose...[After being] in and out of 12 facilities... since October 2016, Mario has been home and is bedridden, eats baby food and drinks thickened liquids. I wished I had heard about AFTD before so he could have participated in trials. My wish is that people are as aware of FTD as they are of Alzheimer's, so that we can find a cure.

If you want to share your story of love, create a fundraiser today, or email Grassroots Events Coordinator, Bridget Graham to get started: bgraham@theaftd.org.
Care and Support
AFTD's Educational Webinar Series

Dr. Alvin Holm at the AFTD Conference in 2016
AFTD's Educational Webinar Series brings experts to you to address issues important to all whose lives are impacted by FTD. The second installment in the series, which took place on January 12th, is now available on AFTD's YouTube channel. This webinar was presented by Alvin Holm, MD, FACP, Founder and Director of the Cognitive and Behavioral Disorders Program at Bethesda Hospital in St. Paul, Minnesota. Dr. Holm discussed a three-tiered care paradigm: symptom-specific therapies, wellness management and environmental support, and how it can help caregivers manage FTD care more effectively. 

Watch the webinar here:

T he next installment in the Educational Webinar Series will be on May 25th, with Dr. Katherine Rankin , a professor in the UCSF Department of Neurology, who will be discussing  bvFTD. Details on this webinar will be released soon.

Connect and Learn at AFTD's 2017 Education Conference!

Join us at AFTD's Education Conference on May 5th in Baltimore and hear expert clinicians present on the latest developments in FTD  research and treatment. This year's robust program will offer more brea kout session options for caregivers and persons diagnosed than ever before. Registration is now open; you can view a conference flyer, including a full agenda, here .

Chiadi Onyike, MD
As one highlight, the conference's clinical presentation will be provided by Chiadi Onyike, MD, 
Director of the Johns Hopkins University FTD and Young-Onset Dementias Clinic, and AFTD Medical Advisory Council Member. He will provide a detailed overview of the different types of FTD, their pathology and how creating partnerships can benefit treatment.

For registration information, additional conference details and sponsorship information, visit AFTD's conference page.
Medical Momentum
 
AFTD Names Recipients of First FTD Biomarkers Initiative Awards

The new FTD Biomarkers Initiative was established to identify biomarkers -- biological features that indicate whether a person has a disease and if so, how advanced the disease is. Identifying FTD biomarkers will address two of the most important challenges facing families, physicians and researchers: (1) diagnosing FTD accurately and (2) evaluating the effectiveness of potential treatments in clinical trials.  AFTD is proud to announce five researchers who are the recipients of the first awards through this program:
  • Randall Bateman, MD (Washington University in St. Louis), "Human CNS tau kinetics in tauopathies," will utilize a technique known as Stable Isotope Labeling Kinetics (SILK) to track the production and clearance of different forms of the protein tau.
  • Christian Haass, PhD (Ludwig-Maximilians University and DZNE), "sTREM2, PGRN and GRN as CSF markers for microglial activity, disease progression and therapeutic target engagement," and his team will develop immunoassays to measure proteins involved in regulating brain inflammation.
  • Leonard Petrucelli, PhD (Mayo Clinic-Jacksonville), "Assessing poly(GP) proteins as clinical and pharmacodynamic biomarkers of C9orf72-associated FTD," will use his award to develop an assay for abnormal poly(GP) proteins resulting from mutation of the C9orf72 gene, based on SimoaTM (single molecule array) technology.
  • Jonathan Rohrer, MRCP, PhD (University College London), "Identification of novel fluid biomarkers of tau and TDP-43 pathology," heads a team that will also develop assays using the Simoa platform; in this case, for tau and TDP-43.
  • Judith Steen, PhD (Boston Children's Hospital), "Quantitative profiling of tau in CSF to pilot diagnoses and monitoring treatment effectiveness in FTD patients," and "Using TDP43 as a biomarker in FTD patients," received funding for these related projects, both of which will use a novel mass spectrometry method to measure chemical alterations in tau and TDP-43.
This program is only possible through a generous donation from the Samuel I. Newhouse Foundation. Read the full announcement here.

AFTD Announces Recipients of 2016 Basic Science and Clinical Research Pilot Grants

Since 2005, AFTD Pilot Grants have provided seed funding to jump-start innovative research and support early-career investigators. In 2016, AFTD awarded two Pilot Grants for the third consecutive year; we are proud to announce the winners:

Dr. Maria Llorens-Martin
Maria Llorens-Martín, PhD, 
Assistant Professor in the Department of Molecular Neurobiology at the Center for Networked Biomedical Research in Madrid, was awarded the 2016 Basic Science Pilot Grant for her proposal, "Tau and adult neurogenesis: Therapeutic potential for frontotemporal degeneration." Dr. Llorens-Martín's project charts new territory in understanding the biological basis of FTD, using state-of-the-art techniques to study the formation of new cells in the brains of mice with mutations of the tau gene that also occur in a form of familial FTD, FTDP-17. In addition, she'll test the effectiveness of environmental enrichment and artificially stimulating the maturation of newly formed brain cells at reversing the detrimental effects of these mutations; if successful, her results could lead to new approaches for treating FTD. 

Dr. Paola Caroppo
Paola Caroppo, MD, PhD, holds the position of Researcher at the IRCSS Foundation Carlo Besta Neurological Institute in Milan. She received the 2016 Susan Marcus Memorial Fund Clinical Research Pilot Grant for her proposal "Detection of misfolded TDP-43 protein in CSF and plasma of GRN and C9orf72 mutation carriers." In this project, Dr. Caroppo and her colleague Fabio Moda, PhD will try to adapt a technique originally developed to detect very small amounts of disease-causing proteins in disorders such as Creutzfeldt-Jakob disease to measure the protein TDP-43,  which accumulates in people with FTD-related mutations in the GRN or C9orf72 genes.  If they are successful, this procedure could lead to a diagnostic test for TDP-43 associated FTD.

For more information on AFTD's research programs, see the 2016 annual report here.
The AFTD-Team

The AFTD-Team is Breaking in our New Sneakers...

...and we're targeting cities for this year's walk/runs! We've got a few races in mind already, but we could always use the opinions from those of you with boots-on-the-ground in local communities. We're looking for quality walks, runs or high endurance events (i.e. Spartan Race) in the following cities:  

Baltimore, MD
Austin, TX
Washington D.C.
Denver, CO
Boston, MA
Portland, OR/Seattle, WA
Chicago, IL
Los Angeles, CA

The AFTD-Team already has a team created with 6 participants registered in AFTD's hometown race, the King of Prussia 10 Miler and 5K Run/Walk on May 21, 2017. Last year, 50 people joined the AFTD-Team and we'd love to increase that number this year. For more information on that race, or if you know of a race in one of the cities listed above, please contact Grassroots Events Coordinator, Bridget Graham, with the details: bgraham@theaftd.org

Words of enCOURAGEment
Kevin and Diane Keller with their dog, Jackson in 2015
Advice from Diane Keller, A Wife's FTD Caregiver Saga 

So many medical professionals are unfamiliar with FTD. Primary care physicians, therapists, neurologists, ER doctors, neurosurgeons, caregivers - you name it - they have NEVER heard of it. Both in my experience, and in others, it is a long journey to even get a diagnosis. Push, push, push until you get a diagnosis. You know your loved one better than anyone. Listen to your gut, and familiarize people with the disease.

Get organized. Journal your observations. I did this and it proved useful when we visited the doctor. Make sure you have necessary legal authority to speak for your loved one. There are Elder Law attorneys who can help.  Make a binder of everything so it is in one place: insurance cards, POAs, will, POLST, doctors' contact information, other contacts, medications, mortuary and brain donation information. I took this everywhere I went.

Knowledge is power, or perhaps just comfort. One resource I have found to be very helpful is AFTD's website which has a ton of information. AFTD also hosts a closed Facebook support group so its members can freely ask questions, vent, cry online and offer each other support. 

To watch a loved one lose their mind and body is gut-wrenching, but it  helps to remember that there are many kind people out there. Don't be afraid to ask for help and to let someone know if you need additional resources. If there is one positive thing to come out of this disease, it is my renewed faith in my fellow man.
AFTD's Network of Support
A FTD offers ongoing training for affiliated volunteer support group facilitators, and is grateful to those willing to share their time and talents to help caregivers gain valuable support and resources. To our newest support group facilitators,  w e are honored to welcome you aboard! 

Jordan Daniels
New Orleans, LA
Leslie Johnson
Mobile, AL
Kathy LaFone Alamance and surrounding counties, NC
Charlie Bryant-Pardini Alamance and surrounding counties, NC
Susy Murphy Frederick, MD

Find information on local support groups here. Thinking of becoming a support group leader in your area? Learn more by contacting our Support Services Manager, Bridget Moran at bmoran@theaftd.org or 267-758-8653.  

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