Our Work

Early Impact

Feedback to date has only confirmed that a significant gap exists in the emotional recovery guidance and resources available for stroke survivors, their families and professional caregivers. Central to our mission is finding effective ways to increase awareness of this gap and actively promote the importance of addressing emotional needs and rebuilding identity after stroke.

Through speaking engagements, meetings with healthcare professionals and survivor groups, podcasts, and interviews,  Debra and Steve are able to provide both powerful voice and varied perspective. Together, they have almost a decade of lessons to share from navigating the aftermath of Debra’s severe stroke — through the vulnerable eyes of a survivor and principle caregiver/supporter, as partners and as parents.  As individuals, Debra brings academic expertise in identity, and a growing understanding of how these concepts and tools may apply in a life post trauma. Steve’s leadership experience in a nonprofit focused on social and economic equity has particular relevance for a community of survivors that often lacks access to the support and resources needed for recovery. 

In addition to speaking engagements to build awareness, we are meeting directly with experts on stroke recovery — neurologists and other physicians, therapists of all kinds, educators, policy makers, business and nonprofit leaders and others with the ability to influence the stroke recovery care continuum. We are also engaging with the most important experts — stroke survivors and their families — to learn what is most needed and least available to support their emotional journey back to good lives. This work is not only critical to broaden and deepen our understanding of the issues, it is creating ripples of awareness and building foundations for future collaboration. 

Looking Forward

While Stroke Onward’s mission is clear and our launch successful, additional initiatives to deepen impact will continue to evolve. We intend to carefully assess how and where we position strategic efforts on a critical path that begins with raising public and professional awareness, and ends with survivor self advocacy to improve access to needed emotional resources at the right time in each individual’s recovery. 

Many talented professionals and excellent organizations are engaged with stroke recovery and we are committed to amplify and complement – not duplicate- existing efforts and resources.  There are also many lessons to be learned from organizations in other medical fields that have created models that are driving change in resource efficient ways. We intend to work closely with our growing networks as one means to further prioritize, develop, and test our initial ideas.  These include:

  • Influencing Influencers: Who has the best opportunity to advise survivors and their supporters on the importance of identity and emotional recovery after stroke? When is the right time for survivors to absorb and use that advice? In acute treatment post stroke, focus is squarely on recovering capabilities. Post discharge many survivors disconnect from the medical system, especially those with limited resources.  Where and when might we create the greatest impact by delivering the right material to influencers?
  • Improving access to resources: Survivors, families and professional caregivers tell us that it’s hard to find good resources to support the post stroke emotional journey. Even those that exist are often “hidden” amidst material dominated by physical recovery; some of the best resources we’ve seen are on websites unrelated to stroke — like grieving a loss or coping with cancer. How helpful might it be to offer online access to a range of support resources from a variety of sources carefully curated from the stroke survivor’s perspective?
  • Supporting support groups: Many survivors and caregivers have told us about the power of peer support groups.  We are developing a support group discussion guide for Identity Theft; would further resource development have meaningful impact?   
  • Creating virtual support groups: Not all survivors and supporters can access a local support group.  There are excellent online groups for stroke survivors generally. Is there value for one focused strictly on rebuilding identity and the emotional journey after stroke?
  • Developing curriculum: Might the greatest impact come from highlighting the importance of identity and the emotional journey in the training programs for professionals who will work with survivors and their families? How might we influence curriculum? For medical school and residency programs?  Training for physical, occupational, speech and other therapists? Possibly for continuing education programs?   

In the months ahead we will refine our strategy and begin to broaden our activity. If you have thoughts about the greatest need, people we should speak with or any other ideas about how we can best support the survivor community, please reach out and let us know

Identity Theft Book

Identity Theft: Rediscovering Ourselves After Stroke, co-authored by Debra Meyerson and her eldest son, Danny Zuckerman, took five years and a lot of determination to write.  Released in 2019, the book conveys Debra’s triumphs and struggles following the stroke that stole her identity and almost her life.  

Much  more than a memoir, Debra draws on her skills as a social scientist and interviews with dozens of fellow survivors, family, friends, caregivers, physicians, therapists and other professionals to explore the often overlooked emotional journey of stroke recovery.   An inspiring read, the book assures survivors and those that care for and about them that they are not alone. It helps them cope with the forced changes to identity caused by stroke and other illnesses or trauma that rob people of important capabilities.  

The book and the lessons learned while writing it laid the foundation for Stroke Onward.  All author proceeds from the sale of Identity Theft will help fund Stroke Onward’s future work.  For more about the book visit: identitytheftbook.org.

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