2025 Impact Report
What do parents need to feel that they are
“good” parents to a child with a serious medical condition?
Courageous Parents Network was founded on a personal conviction: that a combination of pediatric palliative care, anticipatory guidance from other parents, and grief counseling had helped Charlie and me give our daughter Cameron the best possible arc of a life in the context of a life-limiting diagnosis. In the years following Cameron’s death, we have had no regrets of any consequence. We’ve felt, in our bones, that we were the best parents we could be for her. This has made all the difference for our family.
That critical combination of factors created the foundation for CPN. In the early days a donor pushed me to consider whether the model was grounded in anything beyond my own experience. Fair enough. I spent days in a university library, and found my answer in Dr. Pamela Hinds et al’s 2009 article in the Journal of Clinical Oncology: “Parents of children who have died of cancer report that their sense of having been a good parent at the end of their child’s life helps them to emotionally survive their experience and their child’s loss.”
Subsequent research and hundreds of conversations have deepened this understanding. What began as personal conviction is now CPN’s North Star: that everything we do should be designed to give parents confidence that they are being the best possible parent and advocate for their child—and, in partnership with clinicians, to transform the care experience for everyone in the room.
What do parents need to feel that they are “good“ parents to a child with a serious medical condition? First and foremost, of course, they want to have confidence in the medical team. Then, confidence in the knowledge that they can advocate effectively and help their child achieve their fullest potential while embraced with love.
The pages that follow chart CPN’s learning and evolution toward our North Star and, in particular, new ways of thinking about how to support parents’ aspirations. About how the Network’s collective wisdom is being shaped into anticipatory guidance—a structured way to help families know what to expect, when, and what to do. This is guidance infused with emotional intelligence, validation and the palliative perspective that prioritizes good days, the family’s quality of life, and parental agency. Here, too, is information about other powerful work: Parent Champions, In the Room events, and a new and growing partnership with Stanford Medical School.
None of this happens without you. As I step back and look at what is being accomplished on behalf of our families and clinicians, I completely appreciate you for helping make all this possible. On behalf of the Board, staff and all the families and clinicians impacted, please accept my sincere thanks for your support.
Blyth Lord Founder and Executive Director
Team Members
Blyth Taylor Lord, MEd Founder & Executive Director
Jennifer Siedman, MEd Director of Community Engagement
Chrissy Salley, PhD Director of Clinician Engagement & Outreach
Carol Trager Communications & Marketing
Alison Me Manager, Content Production
Claire Mills Manager, Marketing & Communications
Ashley Hill
Manager, Digital Operations
Z Brewer Director, Digital Product
Devin Rojas Platform Engineer
Sarah Casey Manager, Falmouth Road Race Fundraiser
About Courageous Parents Network
Courageous Parents Network (CPN) is a nonprofit 501(c)(3) organization that provides curated digital resources and programming to help caregivers and others caring for children with a serious medical condition navigate the illness journey with support and a sense of community.
At the heart of CPN are parent and clinician voices that illuminate and share the lived family experience, focusing on social, functional, and emotional needs and the positive impact of “palliative-aware” practices, regardless of diagnosis and without bias.
CPN resources include video and podcast interviews, educational guides, parent-generated blogs, and a clinician portal offering materials for use in self- and colleague education. CPN’s programming includes a robust social media presence, monthly educational webinars and newsletters, and both live and virtual presentations to clinician audiences, biotech leaders, and patient organizations. CPN also partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets.
Vision
Parents and others caring for children with serious illness have confidence that they are doing the very best they can for the child and family.
Aspiration
To transform the family and care experience, as it is both delivered and received, so that every parent caring for a child with a serious medical condition feels empowered and equipped to advocate for their child and be the best parent possible.
The Faruqui Family
Leaning in to Anticipatory Guidance: CPN’s Story of Using Feedback to Inform Design
The “Courageous” in Courageous Parents Network has many meanings. In the beginning, it pointed to the here-and-now experience of accompanying a child with a serious medical condition. Parents and other caregivers confronting the unthinkable would benefit from the insights and reflections of others who had traveled that path. They would be reassured and gather strength from knowing that they were not alone and, indeed, could survive and possibly even thrive.
Over time CPN gathered anecdotal feedback and data from qualitative and quantitative research with families and clinicians. New ideas emerged. Addressing isolation remained front and center, to be certain. But CPN also got high praise for the organization’s willingness to confront the most difficult topics. And even more: many parents told CPN that they wanted the ability to look far ahead. They wanted to be equipped with knowledge, braced and prepared for the future. And clinicians very much wanted tools to offer this to their patient families.
Courageous Parents Network had a lot of the information at hand. Its library and archives include 900+ videos, more
than 60 downloadable guides, and countless blog posts, all illuminating the experiences and perspectives of parents and pediatric clinicians. The organization hosts webinars for families and conducts live and virtual presentations for clinicians.
But how to make all these resources easily navigable? How to do it in a way that would respect the needs and wishes of families whose appetite for, or ability to tolerate, the information varies so widely? How to meet families where they are with what they need in a way that helps them feel seen and understood?
The answer came in the form of NeuroJourney, CPN’s digital resource designed around anticipatory guidance. NeuroJourney, launched in 2023, is dedicated to the needs of families of children with Severe Neurological Impairment (SNI). The content is presented in a diagram (or journey map) of phases that might occur as neurological impairment progresses. The content reviewers included clinicians and editors who painstakingly considered not just facts, but also tone and the typically unspoken aspects of caregiving.
As is always the case with CPN, even the most difficult topics were presented with compassion and respect.
The reception was swift, strong, and overwhelmingly positive. The map design allowed all users to choose where they wished to focus. The content was deep enough for clinicians to use as an introduction to important information, and for family members to use as a platform for discussions with their medical team.
With this feedback the Courageous Parents Network team resolved to migrate all its content—an immense digital library of original content—to the journey map format. In September 2025 CPN announced an entirely new digital presence designed to scale as CPN identifies additional opportunities to present anticipatory guidance for families and clinicians.
Navigating Medical Complexity is oriented around the experience of families from diagnosis of a serious condition on. The map focuses on the psychosocial aspects of the caregiving journey: validating the family’s lived experience and helping caregivers grow in agency and confidence as their child’s and family’s advocate.
Although Courageous Parents Network was created with parents of living children in mind, many families said that they appreciated the organization’s content around end of life. Bereaved parents told CPN that they had found few in-depth online resources to support them after the death of their child. And so CPN engaged clinician-specialists
to help develop Coping with Loss, a resource dedicated to the needs of bereaved parents. Made possible with a grant from The Parmenter Foundation, Coping with Loss was also introduced in 2025.
NeuroJourney, Navigating Medical Complexity, and Coping with Loss offer content specific to each of their represented topics. But users also have access to the entirety of CPN content, which is designed for easy accessibility through its searching and filtering functions; and to CPN’s events and other news. This structure allows families and clinicians to take advantage of the full depth and breadth of the organization’s resources, whatever their initial interest. The graphic design is warm and inviting, which feels especially important in the context of such emotional topics.
Once again, Courageous Parents Network has responded to a critical problem with an inspired, intelligent and novel solution. The new digital presence equips families in every corner of globe with the anticipatory guidance they need to be “good” parents—the best parents that they can be. Offering this guidance honors families’ courage and brings even deeper meaning to CPN’s work.
Is there more to come? Yes! Much of the content is offered in multiple languages, and that availability will grow in 2026. Courageous Parents Network will also respond to increasingly high demand for a resource devoted to pediatric cancer. Watch for more details on this mid-year 2026.
CPN’s new Coping with Loss journey map.
Collaborations in Thought Leadership
Courageous Parents Network is recognized by clinicians, patient groups and industry as a trusted authority and thought-leader partner representing the lived experience and needs of families caring for a child with a serious medical condition. CPN values these relationships for three reasons: they extend the reach of CPN resources; they increase CPN’s exposure to adjacent groups serving families and thereby grow our understanding of what is available to families; and they enhance our shared understanding of how best to support affected families.
2025 Collaborations include:
Stanford Center for Continuing Medical Education (SCCME)
Courageous Parents Network delivers monthly webinars on psychosocial topics affecting parents of children with medical complexity (see the In the Room article). While designed for a parent audience, pediatric healthcare clinicians frequently attend. They report benefits of learning from CPN about the family lived experience and they value hearing directly from parents.
In September 2025 CPN began to offer continuing education credit to approved professions. Continuing education is made available through the Stanford Center for Continuing Medical Education (SCCME). Thanks to support from the Stanford Medicine Division of Quality of Life and Pediatric Palliative Care, these credits are being offered at no cost through June 2026.
Trisomy 13 and 18 Collaborative
Trisomy 13 and 18 are medically understood as lifelimiting genetic conditions. Babies usually die before their first birthday but some children live much longer. A growing number of families and clinicians are working to improve information available to families to inform decision-making.
In 2025, the Trisomy 13 and 18 Collaborative announced a Request for Proposals for a funding opportunity for projects designed to identify and evaluate educational resources available to families affected by these diagnoses, and to assess informational needs and access barriers. Under the leadership of Chrissy Salley, PhD, Courageous Parents Network submitted a proposal in collaboration with Stanford Medicine, the Genetic Support Foundation, and Columbia University, and was awarded the grant. Investigation and data collection is underway. Findings, with recommendations, should be available by 2027.
Kaitin and Roman
Bud and Emma
Joanne and Sasha
Testimonials
“Thank you for sharing and helping me as a clinician to better understand how to support parents in navigating this path.”
- Clinician
“I truly appreciate the information you provided. It gives us a starting point. Your organization is a blessing. I don’t know how I found you but I’m certainly glad I did.”
– Grandparent
“The stories on CPN empowered a family I am caring for to decide what they do not want [intervention-wise] for their child in a way that nothing any of us clinicians could have said. Because of the truly balanced perspectives on CPN, the parents are able to make the decision that is right for THEM. You are TRULY changing lives. Every day.”
- Clinician
“As a nurse, I work primarily with children diagnosed with cancer, often going through large spiritual questions. I loved learning about different ways to engage with and respect spirituality in children.”
– Clinician
“CPN has become an invaluable resource for countless families and providers who know there is this unmet need for the support that CPN offers. Just yesterday, as I sat in a discharge planning meeting for a medically complex toddler, I was thrilled that one of the doctors introduced CPN to the family. The mother’s face lit up hearing about this resource tailor-made for families like hers.”
– Clinician
“Thank you. It feels so good to be validated in my own feelings... good or bad.”
- Parent
“I found the presentation from CPN so impactful and on point and then discovered all the resources on the site. It helped put some words, terminology and support towards what I had been sensing and knowing all along in my heart about what we all need when we know our lives are going to end soon. It’s why I asked friends and family to honor my son’s life by making a donation.”
- Parent
2025 Programming Highlights & Updates
Courageous Provider Award
The Courageous Provider Award annually recognizes clinicians providing exceptional family-centered care in circumstances of serious childhood illness. Nominees must demonstrate excellence in engaging with patients, parents or other caregivers, and/or other pediatric specialists in a holistic, multi-disciplinary approach to care. They must demonstrate qualities of compassion, tenacity and empathy in journeying with children and their families.
The 2025 Courageous Provider Award recipient was Camara Van Breeman, MN, NP, Canuck Place Children’s Hospice, British Columbia, Canada. CPN’s Blyth Lord had an opportunity to visit and tour Canuck Place and recognize Camara with the award in person.
Expanding Access: NeuroJourney Now Available in Arabic
Courageous Parents Network was proud to make NeuroJourney available in Arabic, expanding access to trusted information for families and the professionals who serve them. Arabic is the sixth-most spoken language in the United States, the fifth-most spoken language worldwide, and the fourth most used language on the Internet. By offering this resource in Arabic, CPN enables clinicians and patient organizations to better educate families and strengthen health literacy across the communities they support.
This important work was made possible through generous funding from Alexion Charitable Foundation.
“There is a lack of accessible, high-quality medical information available for the Arabic-speaking public, especially in the field of pediatrics and complex care. NeuroJourney translated into Arabic includes evidence-based content and guidance. It also helps families feel less isolated, more informed, and empowered in their caregiving journey. I know this will be a frequently used resource for many around the globe.”
– Clinician
2025 Programming Highlights & Updates
“I am a social worker with families who live in the home with their medically complex and fragile children. This session taught me to broaden my views on what having a ‘legacy’ means and to be more present with families in the everyday moments to see the legacy being created.”
– Clinician
In the Room Live-Streamed Events
In 2025, CPN hosted ten live-streamed In the Room events and two book talks. The In the Room events explore pressing issues faced by parents and the clinicians who support their families. More than 2,300 participants have registered for these programs. The five most popular sessions in 2025 were:
• The Spiritual Lives of Children: Exploring the Way Children Connect in their World
• Building Memories and Living Your Child’s Legacy Together
• Parent Insights into Medical Decision-Making
• Siblings Sharing Their Journey with Medical Complexity
• Being My Child’s Protector, Advocate and Decision-Maker in the NICU
As noted, continuing education credits for participation in these programs are being offered to clinicians through a collaboration with the Stanford Center for Continuing Medical Education.
Extension of the Parent Champion Program
In 2023, the CPN team launched the Parent Champions Program to amplify the organization’s reach and ensure that palliative-informed family perspectives are integrated into clinical practice and patient advocacy nationwide. What began as a strategic investment in family leadership has quickly become a powerful force for education, awareness, and systems change.
In April 2025, the second cohort of five Parent Champions—joined by two Legacy Champions from the inaugural cohort—completed an intensive three-day training in Boston, equipping them to speak confidently about CPN’s resources and the critical importance of family-centered pediatric palliative care.
In 2025, Parent Champions generated national visibility through articles, blog posts and podcasts. Collectively, they delivered 22 presentations—virtual and in person—to clinicians and families across the country and expanding awareness of CPN’s programming.
Through this program, CPN and the Champions elevate the family voice as an essential partner in care. By transforming lived experience into leadership, the program strengthens community, informs clinical practice, and advances equitable access to pediatric palliative support nationwide. Thank you to the Ilene Beal Charitable Foundation for funding this vital program.
By the Numbers
2025 REVENUE
$672,504 INDIVIDUALS 47%
$197,100 BOARD 14%
$22,915 EARNED HONORARIA 2%
$448,728 FOUNDATION 31%
$41,905 CORPORATE 3%
$40,096 FALMOUTH ROAD RACE 3%
TOTAL: $1,423,248
2025 EXPENSES
$119,470 ASSESSMENT, STRATEGY, ADMIN 11%
$139,150 FUNDRAISING 13%
$460,921 PROGRAMMING: PARENTS 42%
$377,117 PROGRAMMING: CLINICIANS 34%
TOTAL: $1,096,658
Connecting with Families and Clinicians
Thanks to the generosity of our donors, CPN’s resources continue to be available free of charge—anytime, anywhere—for families and clinicians through our digital platform and other programming. With the new site design and continuing outreach activities, CPN’s 2025 reach was the most significant to date:
81,000 new unique visitors to the platform
236,835 page views on the platform
76,389 video views on the platform
12,200 returning users to the platform
112,500 sessions on the platform
5,004 family members
4,773 clinician members
4,990 clinicians and parents reached in live presentations and Grand Rounds
Looking Ahead to 2026
NeuroJourney
NeuroJourney Available In More Languages
Without clear information, contextualization, and support, families may face barriers to health literacy, feel less confident participating in decisions, and struggle to build a shared understanding with clinicians about their child’s likely course.
Hoping to ease communication and reduce stress for both families and care teams during an already challenging journey, CPN determined that offering the organization’s assets in more languages would help ensure that more families have access to the critical anticipatory guidance already available to native English speakers.
Thus, Courageous Parents Network will soon expand NeuroJourney with the addition of Portuguese and Mandarin alongside Arabic, French and Spanish. The translations are developed in consultation with experts to ensure that the palliative care content reflects appropriate cultural context and sensitivity.
This work, in addition to the Arabic translation, was supported through generous funding from Alexion Charitable Foundation.
The CPN Team is Evolving!
From the very beginning, Courageous Parents Network has been first and foremost about individual people beginning with the individuals on the team who have personal and professional expertise to advance CPN’s mission and programming. Entering its 12th year, the team is evolving and growing in exciting ways to meet demand and opportunity. Jennifer Siedman is retiring as Director of Community Engagement, a position she built from the ground up. Four new people are joining the team to faithfully continue and advance family programming: Laura Will, Associate Story Curation; Naomi Williams, Associate Social Media; Lindsey Topping-Schuetz, Associate Parent Champion; and Blair Young-Whitworth, as Director of Family Education and Engagement. CPN is currently recruiting for the new position of Director of Institutional Advancement (Fundraising & Strategic Partnerships).
Pediatric Cancer Journey Map
Courageous Parents Network has received generous financial gifts to fund the development of a digital resource for parents of children, adolescents, and young adults with cancer. This resource will leverage the experience CPN has acquired through the development of Navigating Medical Complexity, NeuroJourney, and Coping with Loss (see page 4). The topics covered will address the psychosocial needs of parents in this population and, as with everything that CPN does, will be informed by input from expert clinicians and families.
Aisling and Éabha
Lauren and her twin sister
From CPN’s Governance
Dear Friends of Courageous Parents Network,
As I look back on 2025, I keep returning to how CPN continues to show up for families with steadiness, honesty, and care. Anticipatory guidance has always been central to CPN’s mission, but this year reminded me that guidance is not just information—it’s companionship. It’s the feeling of someone walking alongside you, helping you see what might come next, and offering clarity when the path feels uncertain. So much of what we’ve learned this year has come directly from parents, clinicians, and partners who have trusted us with their stories. Their insights have shaped how we design our programs and our platform—whether through our relaunched website with newly curated libraries of videos and guides or tools like NeuroJourney that help families anticipate the phases ahead—ensuring that CPN remains responsive to what families truly need.
I am deeply proud of how our Board of Directors has grown in both size and strength this year. Each voluntary board member brings their whole self to this work: their lived experience, their questions, their expertise, and their care. Their commitment and stewardship make CPN stronger, steadier, and ready for the decade ahead. To my fellow Board members, thank you.
Board Members
Becky Aures, MD
Pediatric Critical Care Attending
Mass General Brigham for Children
Eric Bartholomae
Former EVP Finance, Wolters Kluwer
Amy Brin
Principal, Amy Brin Consulting, LLC
Sarah Burnett, NP
Pediatric Nurse Practitioner
St. Louis Children’s Hospital
Lee Cohen
Former Managing Director, Wellington Management
I am especially grateful to Blyth, Jennifer, and the entire CPN team, who continue to build and tend the “big tent” that welcomes us all in a way with compassion, grace, thoughtfulness, humility, and fervor. They create a space where listening—not just hearing—is a daily practice, and where families can come in and out as they need, knowing they will be met with understanding. And to the many parents and caregivers who make this community what it is: thank you. Your willingness to share your stories, to support one another in both big and quiet ways, and to let us learn from your lived experience is the heartbeat of CPN. You remind us every day why this organization matters and how, truly, one voice can change someone else’s world.
As we move forward, we remain committed to learning, adapting, and responding to the needs of families and clinicians. Thank you for being part of this community and for helping CPN continue to grow in wisdom, compassion, and connection.
With gratitude,
Kate Tighe, Board Chair
Gay Grossman
Patient Engagement Liaison, GeneEX
George Gulu
Senior Director, Digital
Journey & Web Performance, JLL Performance
Diane Meier, MD
Director Emeritus, Center to Advance Palliative Care (CAPC)
Julia Ong
Senior Counsel
Vertex Pharmaceuticals
Irina Ridley
Chief Legal Officer
Aerin Medical, Inc.
Myra Sack
Parent; Founder, E-motion
Kate Tighe, Chair
VP, Head, US Public Affairs & Patient Advocacy – Immunology, Sanofi
Kendra Wilde
Founder, Host, Wild Peace for Parents, A Little Easier Podcast Series
Lisa Resneck Wyett
Mark Harris Stationers
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