Youngtimers

Monthly Virtual Support Groups

Support groups bring together individuals who are facing or have faced similar experiences. For Youngtimers, our support groups provide a much-needed opportunity for people affected by early-onset familial Alzheimer's disease (EOFAD) to share their personal experiences, feelings, coping strategies, and information about their lifestyle, disease, and research participation (or possible treatment). For our community, support groups fill a gap between a person’s lack of adequate emotional support from the medical field and their own friends and family, who may not fully understand the disease and its impact. The goal of these support groups is to provide a space for individuals to come together and speak about their fears to an audience that understands and/or may be going through similar challenges. Youngtimers support groups are hosted on Zoom virtually each month and facilitated by trained and licensed social workers and/or members in our community with extensive experience with EOFAD.

Buddy Program

Similar to the mission of Big Brothers Big Sisters of America, we recognize the importance of one-on-one mentoring relationships in promoting resilience, social and emotional development, and mental health within our disease community. For this reason, we created the Youngtimers Buddy Program, which matches "Buddys" based on their place in the disease journey and/or specific mental health/social needs. Youngtimers will train mentors prior to being matched to a mentee and will continuously offer support. Some of the elements of the mentor training will include an orientation that familiarizes the mentor with the program, education about the basics of EOFAD and mentoring strategies, and mock patient calls with a program coordinator before their first mentoring session. To sign up for a mentor, mentees will have to contact Youngtimers, either through email or our website, and express interest in being paired with a mentor. Youngtimers will then collect information via a phone call about the mentee’s current state/journey in the disease and pair with an appropriate mentor accordingly. Specific guidelines will need to be met for an individual to qualify and meet the requirements of becoming a mentor. These will include age, membership of an EOFAD family, mental and health well-being, education, a completed application, etc. Mentors will be restricted to no more than two mentees. Mentors will be asked to commit at least 30 min/wk of communication with each mentee, which can include phone, text, email, or virtual interactions. Mentors must have access to a device with telephone/cellular service or internet access through which they can communicate with their mentee. The program coordinator will check in monthly with both the mentor and the mentee to assess how the interactions are going. If one or both in a pair feel they are not ‘clicking,’ the program coordinator will make suggestions for more satisfactory connections, or in rare cases, recommend a re-pairing. The length of each mentoring relationship is open-ended, but we do recommend at least a six-month period commitment. In addition to one-on-one mentoring, Youngtimers will also offer a concierge phone support service, which will provide those in need with immediate support and answers for critical questions related to their situation and disease status.

Online Education and Resource Hub

Youngtimers launched its website www.youngtimers.org in 2019 to serve as an information and community hub for those affected by EOFAD. Our website content will be divided into the following main categories to address the lack of education and resources currently available to the EOFAD community: 1) The Disease: i.e. What is EOFAD? – information will include an overview of the disease, the genetics of inheriting the disease, the symptoms, and stages of the disease. This information will be provided as written articles and videos. 2) Support: i.e. Get Help – resources will provide information about critical at-risk and patient care issues (genetic testing, long-term care, caregiving strategies, clinical trial participation, fertility options, lifestyle and exercise) in the form of: - How-to guides - Ask the Expert series, in which we interview experts on specific topics - Community Stories, in which we interview patients on their disease journeys. These resources will be provided as written content (translated into multiple languages including Spanish, French, German), audio/podcasts, and videos. We will also compile a database of specialists that can assist EOFAD individuals and families with their healthcare and financial needs: neurologists, genetic counselors, psychologists, financial advisors, etc. 3) Research: i.e. Explain the science - this section will provide up-to-date news on drug trials and preclinical research. We will also delve into the science behind these discoveries so patients can feel informed on the current status of research. This will also include interviews with experts to distill seminal findings in the field of AD and EOFAD to the general public.

Workshops and Conferences

Building and fostering our community will be accomplished with annual conferences, community retreats, and special topic workshops that focus on the key issues and topics of relevance to this community. Conducted on a bi-monthly basis, these topic-specific events will provide a regular and consistent opportunity for members of our larger and dispersed community to come together to learn from experts and each other. Many of these events will be conducted virtually. However, at times, we will create opportunities for these individuals to come together in person for single-day and weekend-long events and retreats. Workshops will mostly take place virtually, but retreats will be conducted in-person. Examples of topics covered by workshops and/or conferences are listed below: Educational (science): o EOFAD 101, genetics, biomarkers o Basics of current and future investigational Alzheimer’s drugs o Basics of gene-editing therapies (precision and personalized medicine) EOFAD-specific support resources: o Caregiving strategies o Genetic testing o Grief counseling o Fertility options (egg freezing, IVF with PGT) o Legal affairs (genetic discrimination, disability, power of attorney, etc.) o Financial planning (long-term care insurance, social security, etc.) o Community building (exercises to facilitate the formation of relationships/support) Promotion of health and wellness: o Mental wellness o Diet and lifestyle (discussion of types of diets and exercises that promote brain health, sleep, yoga, etc.) o Non-pharmaceutical approaches The annual Youngtimers conference will involve a keynote address and daily plenary talks by leaders in the EOFAD field, however, the main focus of the conference will be on the breakout sessions/mini workshops with topics planned for each subgroup (e.g. at-risk individuals, caregivers, young adults, etc.) of the EOFAD community.