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©2018 AFTD 1
FTD ADVOCACY, EDUCATION AND SUPPORT
ADC – ORE Core Fall MeetingSharon S. Denny, Program Director, AFTD | October 19, 2018
©2018 AFTD 2
Help & Hope
AFTD works to bring help for those affected today – and to bring hope for
a future without this disease.Support | Education | Research | Advocacy | Awareness
©2018 AFTD 3
The Experience of FTD
Less common dementia
• Affects estimated 50,000-60,000 in U.S. 1
• No treatments to slow or stop progression
1 Knopman, D., Roberts, O. (2011); CurePSP
©2018 AFTD 4
The Experience of FTD
Poorly understood symptoms
• Behavior, language or motor symptoms; not memory• Avg 3.6 years to diagnosis1
• Primary impact on “social brain” – alters social contract
1 Diehl & Kurz 2002; Zanto & Gassally, 2013
©2018 AFTD 5
The Experience of FTD
Most common dementia under age 60
• Employed, often peak of career • Physically robust and active • Family dynamics• Financial impact
©2018 AFTD 6
The Experience of FTD
Higher stress, isolation &
“care burden”
Rare
Poorly understood symptoms Younger
onset
©2018 AFTD 7
Impact on the family system
● Coping long before diagnosed● Symptoms not recognized as illness● Role changes (loss of employment; child/young adult
caregivers, household tasks)● Behaviors intrusive, embarrassing● Financial and legal issues ● Isolation magnifies challenges
©2018 AFTD 8
Care & SupportAlzheimer’s approaches are not sufficient ● Eligibility issues under 65● AD meds not indicated● Falls to families to educate, advocate & provide care
Need● Peer support and FTD education ● Individualized beh. & environ. strategies ● Creative problem-solving
©2018 AFTD 9
Resources
©2018 AFTD 10
Support
2278 HelpLine cases
in 2017
8AFTD-affiliated phone/internet
groups
80AFTD-affiliated support group
leaders in 31 states
180Comstock grants
awarded (136 respite, 44 travel)
New! Quality of Life Grant
for persons affected
©2018 AFTD 11
Partners in FTD Care
In-depth education on care challengesCase-stories, concise strategies & tips
• Challenges in Diagnosis• ALS / FTD• Family Participation in FTD Research• Managing Apathy• Comfort Care and Hospice
©2018 AFTD 12
Research LandscapeFTD is a spectrum of diseases• Diagnosis by clinical syndrome: bvFTD, PPA, CBS, PSP• Underlying pathology: TAU, TDP-43, FUS • Approximately 10-20% familial: MAPT, TAU, C9ORF72
FTD can inform other neurodegenerative diseases • Tauopathies: PSP, CBD, bvFTD• C9 in ALS/FTD
ARTFL/LEFFTDS - Rare disease clinical research network
FTD is a spectrum of diseases
Corticobasal Syndrome
svPPAsemantic variant
FTD -Motor Neuron Disease/ALS
lvPPAlogopenicvariant
Behavioral Variant FTD
ALS
Progressive Supranuclear Palsy
Cognitive loss Motor symptomsUpper and/or lowermotorneuron pathways
Cognitive lossBehavior impairmentMotor symptoms
Fluent speechDecreased wordcomprehensionand recognitionof objects,people
Halting speechShort phrasesGrammar errors
Behavioral &cognitive lossParkinsonismEye movement disturbances
Cognitive &memory lossAsymmetric rigidityApraxia
naPPANonfluent/agrammaticvariant
Spontaneous butslow speech outputWord retrieval problems
Cognitive lossDisinhibitionInflexibilityDecreased insight
The FTD spectrum shares proteinopathies and anatomic loci
Corticobasal Syndrome
svPPAsemantic variant
FTD -Motor Neuron Disease/ALS
lvPPAlogopenicvariant
Behavioral Variant FTD
ALS
Progressive Supranuclear Palsy
FTLD-TDP43FTLD-FUSCortex, Motor neurons
FTLD-TDP43Frontal/ventralTemporal lobe
FTLD-Tau more thanFTLD-TDP43 or ADpathologyLeft posterior frontalLobe, insula
FTLD-Tau(4R)Basal gangliaBrainstem
FTLD-Tau(4R)more than AD pathologyFrontal, temporallobe, Basal ganglia
naPPANonfluent/agrammaticvariant
AD pathology more thanFTLD-Tau or TDP43Left post/suprtemporal lobe &Medial parietal
FTLD-Tau (3R)FTLD-TDP43Prefrontal lobeTemporal lobe
TDP43,SOD1,FUSUpper, lower MNs
Corticobasal Syndrome
svPPAsemantic variant
FTD -Motor Neuron Disease/ALS
lvPPAlogopenicvariant
Behavioral Variant FTD
ALS
Progressive Supranuclear Palsy
C9ORF72GRNFUSOPTNPNF1SOD1TARDBPUBQLN2VCP
C9ORF72GRNTARDBPFUSVCP
SporadicGRNC9ORF72MAPT-unclear
MAPT
MAPTGRNC9ORF72
naPPANonfluent/agrammaticvariant
C9ORF72GRNMAPTVCPCHMP2B
(AD)
And A Spectrum of Genetic Causes**approximately half of all FTD cases have a hereditary
componentC9ORF72,GRN, MAPT are the most common gene mutations
©2018 AFTD 16
Engaging the FTD Community
AFTD’s role in research outreach & recruitment
• Co-founded FTD Disorders Registry www.FTDRegistry.org; >1950 joined to date
• Strong, unique relationship with those affected• Flexibility to support recruiting efforts
©2018 AFTD 17
Dianna - updates
FTDDR Co-founders: AFTD and the Bluefield Project
©2018 AFTD 18
Economic Burden Study*
$99K
$50KTwelve months before
an FTD diagnosis, most families reported a
household income in the $75,000–$99,000 range.
Twelve months after diagnosis, income fell as
much as 50 percent.
Overall, families dealing with FTD face an economic
burden of around
$120,000each year — roughly twice the economic
burden of Alzheimer’s.
FTD ALZVS37%
of FTD caregivers said they stopped working
post-diagnosis.
58%of respondents said that FTD caused their loved
ones to make poor financial decisions.
*Published in the scientific journal Neurology, 11/14/17
©2018 AFTD 19
Engaging Persons with FTD
Education ConferenceAdvisory Think Tank Quality of Life GrantsMedical and Scientific Collaboration• Educating pharma lived experience• Inform study design
©2018 AFTD 20
Advocacy
©2018 AFTD 21
• Postdoctoral Fellowships
• Pilot Grants
• Biomarkers
• AFTD-ADDF Drug Discovery
• TreatFTD
New in 2018! Non-Pharmacological Pilot Grant Focus is on innovations in disease management
Research Grant Programs
Portfolio of Active Grants: > $3 million
Steven Finkbeiner, MD, PhDJ. David Gladstone Institutes
Kathryn Bowles, PhDIcahn School of Medicine at Mt. Sinai
Haakon Nygaard, MD, PhDUniversity of British Columbia
©2018 AFTD 22
New Opportunities• Listed with Department of Defense on CDMRP 2018 &
2019 grants for FTD disorders• Membership in FNIH Biomarkers Consortium• FTD Education Days with industry
• Patient Focused Drug Development meeting with FDA (externally led), submit LOI 2018
©2018 AFTD 23
A CommunityCommitted to Change
theaftd.org | HelpLine: 1-866-507-7222 | [email protected]
