Giving Connection

Association for Frontotemporal Degeneration

This nonprofit has not yet verified the listed information.

Nationwide

Volunteer

2700 Horizon Drive suite 120, King of Prussia, PA, United States

EIN Number: 41-2073220

contact information

Phone: 1-866-507-7222

Hours: Closed

Mon - Fri 10:00 AM - 6:00 PM (EST)

Sat Closed

Sun Closed

Website: http://www.theaftd.org/

Email: info@theaftd.org

NTEE Code: G48: Brain Disorders

MISSION - WHAT WE DO

AFTD’s mission is to improve the quality of life of people affected by FTD and drive research to a cure. We work every day to advance: Research. We promote and fund research toward diagnosis, treatment, and a cure. Awareness. We stimulate greater public awareness and understanding. Support. We provide information and support to those directly impacted. Education. We promote and provide education for healthcare professionals. Advocacy. We advocate for research and appropriate, affordable services.

SERVICES - HOW WE DO IT

Comstock Grants In 2009, AFTD established the Respite Care Financial Assistance program to alleviate some of the financial burden people experience while navigating an FTD diagnosis. The initiative has since evolved into the Comstock Grant program, which provides direct assistance up to $500 for each grant to people living with a diagnosis and current care partners. The Quality of Life grant helps persons diagnosed access services or supports that directly address their needs or interests, while the Respite grant can be used by care partners to tend to their physical and emotional well-being. Grants can also assist with the cost of traveling to AFTD's Education Conference or other FTD-related educational events. During the 2023 fiscal year, AFTD distributed 748 Comstock Grants to help people in need. Support AFTDs HelpLine, accessible via email and phone, is often the initial touchpoint for people seeking more information about FTD. Monitored by on-staff social workers, the HelpLine offers guidance on such ways to locate providers with FTD experience, manage language and behavior symptoms, and access community support. Offering translation services for more than 200 languages, the HelpLine aided 3,379 people during fiscal year 2023. Our support groups are a vital resource for the people we serve, each one organized and led by volunteers who are trained and supported by AFTD staff. At the close of fiscal year 2023, 102 AFTD support group volunteers were leading 77 groups. Annually, we publish multiple resources to share updates about FTD research, available support services, care management options, and engagement opportunities. As we assess the evolving needs of a growing community, we increase accessibility to vital FTD information by refining and translating our core materials. FTD Research and Drug Discovery As a leader in advancing the science of FTD, AFTD works with a diverse, global community to further the discovery of biomarkers and the development of effective therapies. We also inform a growing network of researchers and clinicians about the needs of people living with FTD, while empowering all who are impacted to become informed volunteer research participants. Through programs such as our AFTD Pilot Grant awards and Holloway Postdoctoral Fellowship, we are fostering early-career scientists engaged in basic, clinical, and translational research to discover underlying biological mechanisms of neurodegenerative disease and identify novel therapeutic approaches for further evaluation. In collaboration with peer organizations, we are investing in ambitious studies seeking to develop tools and technologies to improve diagnosis, monitor disease progression, and effectively treat FTD. Awareness AFTD seeks to promote a greater understanding among the general public and key stakeholders within communities about the unique nature and challenges brought about by an FTD diagnosis, and the crucial need for support and access to resources for those who are coping with it. We work with a growing number of volunteers who are engaged in raising awareness of FTD and our mission in a number of different ways, including Meet & Greets, table settings, interviews with media outlets, and meeting with community healthcare professionals. Many of our volunteers are active in hosting grassroots campaigns throughout the year to spread awareness in their communities and raise funds to support AFTD’s work. Education Education is a vital part of AFTDs work to provide help to people navigating a diagnosis and to inform healthcare providers about FTDs onset and how to care for those who are living with the disease. Through multiple initiatives, we are reaching a growing network of persons impacted, clinicians, care professionals, and key community stakeholders to improve care management, bring forward accessible support options, and drive research engagement. To increase the number of physicians who can recognize and distinguish FTD from related dementias or psychiatric disorders, we collaborate with leading experts in diagnosing FTD and care management strategies to build a robust library of educational tools and resources to inform healthcare professionals. In 2023, AFTD welcomed nearly 950 people from 24 countries, 291 of whom were in-person, for our annual Education Conference held in St. Louis, MO and broadcast online.