ZEBRA PROGRAM

Mental Health, Emotional Support & Comfort Care

Welcome to ZEBRA, a compassionate program that supports the mental, emotional, and spiritual well-being of families and professionals impacted by rare diseases. Whether you’re navigating a new diagnosis, managing ongoing care, supporting patients, or coping with grief, ZEBRA is here to walk with you.

We offer support groups, workshops, professional development, and community-centered resources that honor the non-linear nature of mental health, healing, and loss. Together, we journey toward healing, hope, and renewed strength—one step at a time.

You are not alone.

ZEBRA for Families

Self-Care: Making Yourself a Priority

Taking care of yourself is not selfish—it’s essential. In caregiving, advocacy, and professional practice, your well-being matters.

  • Daily self-care improves emotional resilience
  • Self-awareness and clear communication support healthier relationships at home and in the workplace
  • Practicing self-kindness helps manage stress and prevent burnout

True self-care means honoring your own needs—physically, mentally, emotionally, and spiritually.

Managing Mental Health & Emotional Needs

Mental health challenges can feel overwhelming—but support is available. ZEBRA encourages open conversations about mental health while reducing stigma for both families and professionals.

If you’re experiencing severe anxiety, depression, or grief, talk with a licensed mental health professional. In crisis situations, call or text 988 for the Suicide & Crisis Lifeline.

📖 Families and caregivers can explore coping strategies and counseling support.
📖 Professionals can access training on trauma-informed care, grief sensitivity, and caregiver support.

Learn more by visiting our Mental Health Resource Center.

Comfort Care

Comfort care focuses on quality of life during life-limiting diagnoses or end-of-life transitions. We recognize four core areas of importance:

  • Physical comfort
  • Mental and emotional support
  • Spiritual well-being
  • Practical guidance

Always consult your healthcare provider to ensure care decisions are right for your individual situation.

Spiritual Needs

During moments of hardship or loss, spiritual support can bring peace and meaning. Whether rooted in faith or personal reflection, your spiritual journey matters.

We offer:

  • Prayer and encouragement
  • Referrals to pastors, chaplains, or ministers
  • Space for reflection and spiritual dialogue for professionals working with grieving families

We’re here to pray with you and support your spiritual needs.

The Pause Project: A Respite Program for Parents of Medically Complex Children

The Pause Project is not your typical respite program, it’s a unique restorative experience designed specifically for parents caring for children with Trisomy 18 and other complex medical needs. Sessions provide a safe space for connection, reflection, and encouragement—both virtually and in person.

Through The Pause Project, we:

  • Build supportive peer networks
  • Provide expert guest speakers on self-care, advocacy, education, and healthcare navigation
  • Offer quarterly respite opportunities
  • Reduce caregiver isolation and burnout
  • Strengthen ties with local schools and communities

💡 Note: Support groups are not a substitute for professional therapy or medical care. If you need more personalized support, talk to your doctor about counseling or other therapies.

Professional Counseling & Training

In addition to community and peer support, ZEBRA partners with Tranquility Counseling and Consult, LLC to provide access to licensed therapists.

For professionals, we also offer:

  • Training on supporting families through grief and trauma
  • Guidance on navigating caregiver burnout
  • Continuing education sessions on emotional well-being in rare disease care

ZEBRA for Professionals

Professionals play a vital role in the lives of families impacted by rare diseases. ZEBRA equips healthcare providers, educators, social workers, and community leaders with resources to support their own well-being while providing compassionate, trauma-informed care.

Why It Matters

Working alongside families with rare and life-limiting diagnoses can be emotionally demanding. Burnout, secondary trauma, and compassion fatigue are common risks. ZEBRA helps professionals build resilience and confidence while ensuring families feel truly supported.

Professional Learning Opportunities

  • Trauma-Informed Care – Training on recognizing trauma responses, building trust, and supporting families with empathy.
  • Grief Sensitivity – Practical strategies for walking with families through loss, end-of-life decisions, and long-term bereavement.
  • Caregiver Burnout Awareness – Learn how to recognize signs of burnout in families—and in yourself—while practicing sustainable self-care.
  • Cultural Humility & Health Equity – Explore disparities in rare disease care and strengthen inclusive approaches that honor diverse families.
  • Collaborative Practice – Workshops that bring together professionals and families to improve communication, shared decision-making, and quality of care.

Professional Support Services

  • Peer Support Circles for educators, nurses, and care teams
  • Workshops and Continuing Education (CE opportunities available where applicable)
  • Consultation Services to help schools, hospitals, and organizations integrate emotional and spiritual care into rare disease support
  • Licensed Counseling Partnerships with Tranquility Counseling and Consult, LLC

The ZEBRA Approach for Professionals

We believe strong professional support leads to stronger family care. By investing in your well-being, you strengthen your ability to provide compassionate, high-quality support to the families you serve.

Get Involved

Interested in hosting a workshop, requesting a training, or joining a professional support group? Contact us at admin@theewefoundation.org

Source: U.S. Department of Health & Human Services, National Institute on Aging, https://www.nia.nih.gov | Support Groups, https://www.mayoclinic.org