Make your voice heard. Share your Story. Tell us what to fund.

This event brought patients and caregivers from our related disease communities together on July 8 for our first-annual patient/caregiver-only virtual conversation. It was a chance for a wider community of people impacted by similar life-changing diagnoses to freely talk about issues that impact their daily life.

WHEN: July 8, 2 p.m. ET

Real-time priority-setting for round three of our Pervasive Needs Grants program. 

  • All people living with Alzheimer’s or related dementias, ALS, Huntington’s, MS, or Parkinson’s.
  • Caregivers of people in these communities.



We hosted separate patient and caregiver breakout rooms with facilitated discussions around common needs and challenges in navigating and accessing care.

Caring for the Caregiver

All attendants heard a presentation on tips for caregivers to stay healthy.

Featuring special guests

  • Leah Eskenazi, Director of Operations and Planning at Family Caregiver Alliance
  • Annie Roche, FCA Family Consultant

About the special guests

Leah Eskenazi, MSW

Leah is FCA’s Director of Operations & Planning. She oversees internal operations (human resources, technology, administration) and manages contract and special projects. She is a skilled professional having held leadership roles in human service nonprofits, healthcare and county government, always with the goal to improve the quality of life for older adults, chronically ill adults and family/friend caregivers.  To balance her work responsibilities, Leah is an avid gardener, hiker, yoga practitioner and traveler.

Annie Roche MSW, MPH

Annie has been a Family Consultant at Family Caregiver Alliance since 2017. As a Family Consultant, she conducts comprehensive assessments, community resource consultation, and provides ongoing support and counseling in partnership with families who face the challenges of caregiving, aging, and often dementia. She completed her graduate studies in social welfare and public health at UC Berkeley.

More about Adira’s listening

Round one of Adira’s Pervasive Needs Grants last March, was informed by conversations with partners, and support group visits prior to COVID-19.

Last summer, the grantees of round one joined us for a listening session about the most urgent needs they were seeing to inform round two priorities. Round two was launched around the collective priorities we heard throughout 2020:

  • Caregiver mental health
  • Care coordination and navigation
  • Sharing resources that work

Do you have ideas to add?

Email us!


This event brought patients and caregivers from our related disease communities together for an online, interactive discussion to collectively help name the priorities for our next round of grants.


July 8, 2-3:30 p.m. ET


Event sponsor:

UniQure Logo