FrontoTemporal Dementia (FTD) is a non-treatable, progressive and fatal neurodegenerative condition. We have created FrontoTemporal Dementia Advocacy Resource Network(FTDARN) is a501(c)3 nonprofit, charitable association. We rely solely on the generosity of donations. Every member is a volunteer, there are no paid employees. With the exception of modest operating expenses, all monies donated are given back into the FTD community.
Our mission is to meet the basic human needs of those diagnosed with FrontoTemporal Dementia. To identify and match those diagnosed with FTD and their care partners, families and communities, with resources needed to live positively with a good quality of life for as long as possible.
FTDARN believes that those diagnosed with FrontoTemporal Dementia should be able to live their best life, in their own home, surrounded by their families and loved ones within their own community.
We are nonjudgemental. We live in the moment. We are compassionate and sensitive to those living with FTD, as we are living with this disease as well.
We are understanding of how life can change with a brief visit to the doctor, who will give you a diagnosis, a name to what is wrong, then shown the door without resources or hope. We know how it feels to be told to go home and get your affairs in order. We know, because we have lived through it as well.
We understand the darkness and loneliness FTD brings.
However, the difference is that you do not have to go it alone! Fronto Temporal Dementia Advocacy Resource Network is here to help you.
FrontoTemporal Dementia Advocacy Resource Networks' goal is to evaluate, identify, locate, and provide options for living a better life at any stage of FTD.
The services offered by FrontoTemporal Dementia Advocacy Resource Network are FREE. There is never a charge to help.
FTDARN realizes and acknowledges that Carepartners are in need of "real time" resources and support. FTDARN created The Carepartners Advisory Board to assist with questions or concerns that arise from time to time. To learn more about the Carepartner Advisory Board please click the Carepartner Advisory Board button above.
Service for and by people with FTD
Personal Basic Needs Consultation
Expert Guidance Every Step of the Way
Whether you are newly diagnosed with FTD, or have been living with FTD for years, situations and circumstances of a personal nature will continue to come up. Whether you just need a sounding board, or you would like an Advocate's advice, we are here to help you through those rough times. No problem is too small.
UNDERSTANDING YOUR DIAGNOSIS
A Comprehensive Approach to dealing with all aspects of FTD
Unfortunately, many doctors do not provide you with the information you need when giving you a diagnosis. Our FTD Advocates are prepared to have this discussion with you. The advocate will start from any place in your journey you, carepartner, family or community may be at to help make sure you are fully aware of what your diagnosis entails.
ANALIZING YOUR BENEFIT OPTIONS
Putting You On the Path to Success
Knowing the benefits you may be entitled to from your job, Federal benefits, State benefits, and purchased disability benefits, we are here to help you understand the different programs. Your Advocate will guide you through the process and assist you in making sure you know the facts and what to expect.
FrontoTemporal Dementia Advocacy Resource Network offers a variety of services to those diagnosed with FTD to meet their specific need(s). No matter what the need(s) are, FTDARN is here to assisit and provide you with guidance every step of the way. Take a look below to see a sample of what FrontoTemporal Dementia Advocacy Resource Network can do for you. Remember FTDARN is a 501(c)3 charitable nonprofit, there is never a charge for assisting you.
Providing assistance for medical and pharmacy co-pays
Assist with Emergency Utility payments
Provide assistance in finding Charitable food banks, clothing
Advice for ways to help carepartners who have questions
ACCESSING YOUR COMMUNITY SUPPORT SYSTEM
Get connected one on one with an Advocate Specialist, who also has been diagnosed with FTD. Our Specialist will help you to find services to meet your needs within your own community, or as close to home as possible. We also provide follow-up contact to ensure your needs were met successfully.
PLANNING FOR THE FUTURE
The Path to Successful living
We all become overwhelmed early in our diagnosis with the number of tasks that need to be attended to. Let your FTDARN Advocate Specialist walk you through the list that will make planning for your future more manageable. If you get stuck along the way don't worry, your Advocate will continue to support you through the hard times.
UNDERSTANDING THE HEALTHCARE SYSTEM
These days the healthcare system can be cumbersome for all of us. We have Advocates from the healthcare system ready to help you understand what services you may need to access, as well as to help with medical terminology you may not fully understand.
Our Advocate Specialist, who have been diagnosed with FTD, are here to help you utilize support within your community to meet your basic needs and decrease the stress that these problems can create. Feel free to talk openly one on one with someone who has walked down the path.
FTDARN TEAM MEMBERS
Founder - Chair
Teresa was diagnosed with Legopenic Primary Progressive Aphasia in 2010. Prior to being diagnosed Teresa was employed as a RN clinical care manager for a managed care company. Teresa lives in Phoenix Arizona and spend much of her time advocating for those living with FTD.
Robert "Bob" Meddaugh
Bob was diagnosed in 2006 with dementia which was later refined to behavioral variant FrontoTemporal Dementia (BvFTD) in 2007. Bob lives in Des Moines, Iowa with his wife of 46+ years, Kathryn Stangl.
The Meddaughs have two adult
daughters living in Pennsylvania.
Before FTD, Bob worked as a journalist, communication consultant and database designer. Bob stopped working in 2001 when he kept forgetting what he was working on. Unfortunately, it took until 2006 for Bob to get diagnosed.
Prior to her diagnosis of BvFTD, Anne was a registered nurse with a certification in wound care. Anne was 48 years old when she was diagnosed Now more than 12 years later Anne has reinvented herself in advocating, volunteering and book writing. Anne resides in California with her husband Ed of 35 years. They have twin boys who are both successful emergency room physicians.