About Youngtimers
We’re the non-profit supporting those impacted by familial Alzheimer’s disease (FAD) with community, education and advocacy.
How Youngtimers began
Lindsay and her dad on her 18th birthday, the summer before he was diagnosed.
When Lindsay Hohsfield was 17, she learned that her 48yo father had Alzheimer's. There was no cure–not even a treatment. After it took her father, Lindsay knew this genetic disease could come for her or her siblings.
Lindsay dedicated her life to Alzheimer’s research. She studied biology and earned her PhD, joining an Alzheimer’s lab in hopes of finding a cure.
As Lindsay met other early onset dementia families, she saw their familiar struggles:
Should I learn my genetic status?
How do I deal with the loss of a parent or child?
How can I prepare to lose abilities in my 40s?
How do I tell my children and friends?
Can I stop or slow this?
How do I live, knowing I will develop Alzheimer’s?
Our community may hold the key to preventing Alzheimer’s disease.
Science has identified specific genetic mutations that cause familial Alzheimer’s disease (FAD). Carrying one of these mutations causes a person to develop early onset Alzheimer’s, typically in their 30s-50s, sometimes earlier. People with these mutations have a 50% chance of passing it to each of their children.
Researching these families, doctors hope to solve a medical puzzle that has slowed progress for years.
In the general population, the likelihood and timing of Alzheimer’s is highly variable. People with FAD genetics are highly likely to develop the disease around the same time their parent did
A typical Alzheimer’s patient is in their 70s or 80s, with other conditions that can complicate research. People with FAD genetics often develop symptoms in their 30s - 50s, so they have fewer comorbidities.
Families in this unique group are eager to find a cure. The FAD community is an ideal population with which to test emerging therapies to delay or prevent Alzheimer’s, and they’ve played a key role in Alzheimer’s breakthroughs to date.
Partnering with science, we hope to answer important questions: What causes Alzheimer’s Disease? How can we prevent it?
Can you imagine if we were able to find, connect, and support everyone in this unique population?
Our founding team
As a patient-led organization, we were founded by and for people who are impacted by this rare, early onset dementia. We rely on time donated by members of the community who are driven to help others.
Our organization is entirely volunteer-led and volunteer-run. Our founders are supported by a board, and a panel of volunteers–many of whom are in families that are facing FAD head-on. This is something that we hope to change with your support.
Youngtimers programs to date
Workshops and conferences
Reception at Dominantly Inherited Alzheimer’s Disease (DIAD) Family Conference
Collaborated on agenda for Dominantly Inherited Alz Network (Drug trial arm at Wash Univ.) family conf.
Virtual Workshops: Dr. Rudy Tanzi (Lifestyle Interventions); Dr. Subhojit Roy, (Genetic Editing); Dr. Suzy Lee (Ins and Outs of FAD Panel); Dr. Cynthia Wilcox (Managing Grief); Dr. Bonnie Hennig-Trestman, (How to Talk to Kids about FAD); Intern’l support group with Rare Dementia UK/Canada
Historical accomplishments
132 individuals support group registrants
Hosted 60 asymptomatic, 60 symptomatic, and 80 caregiver support groups
Developed FAD genetic, fertility testing, mental health guides to support FAD journey
Participant work group for FDA listening session
Translated Youngtimers website for Jalisco group at University of Southern California
Global Genes grant recipient
Partner with Hilarity for Charity and Lorenzo’s House
Monthly virtual support groups
Asymptomatic/at-risk
Symptomatic
Early-stage Caregiver
General Caregiver
One-on-one support programs
Ask a question emails
Peer– to-peer paired buddy program (18 matches)
Online education and resources
Monthly Newsletter - 295 recipients (includes patient families, researchers, pharmaceutical representatives, medical professionals)
Youngtimers Forum – Dedicated solely to FAD community
Disease journey guides
Ask the expert video series: Randall Bateman (Director of DIAN Trials Unit); Laxmi Kondapalli (Fertility Specialist), Jill Goldman (Genetic Counselor)
Community stories podcast series
FAD 101
Research updates
Our vision
We aim to develop a sustainable, efficient and impactful organization that focuses on addressing the needs of the FAD community through its core services while also providing knowledge and insight to the general Alzheimer’s and research community.
Unify the FAD community and research community to have a greater and cohesive impact to finding a cure for Alzheimer’s disease
Bring the community together through virtual and in-person activities
Raise awareness about FAD, who and how it impacts multiple generations
Offer programs and meaningful services that are developed by the FAD community for the FAD community
Become a trusted source for relevant and reliable information and resources for the FAD community
Promote awareness of the unique and critical role the FAD community plays for general Alzheimer’s research
We are the ONLY nonprofit, patient-led organization serving families with FAD.
Your help will bridge the gap between this underserved patient community and critical Alzheimer’s research.
Donate
Donate online, or mail a check to:
Youngtimers, Inc.
887 W. 15th Street, Apt. A203
Newport Beach, CA 92663
Volunteer
We’re run entirely by volunteers at this point, and we can always use more help.
Stay Informed
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