Our Outstanding Staff and Volunteers – A Dedicated Team

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Family Advisory Board and Partnership for Parents

Lisa Buell, Maddy’s mom

Lisa Buell is a writer, activist and mother of three, Maddy, Delaney and Hayden. Diagnosed with an aggressive cancer at 6 months of age, Maddy passed away at the age of two, but the little girl who loved to dance, paint and the color purple continues to change the world. Her mothers, Lisa and Nancy, and her siblings are all actively involved in making the world a better place for seriously ill children. “My mission is to ensure that people who care for and those that care about children with life threatening illness or are bereaved have the support in place to give and receive the best care possible.” Lisa is also in collaboration with Manulife Centre for Healthy Living in development of a bereavement follow up for the existing study “Caregiving Parents of Children with Life-Limiting Illnesses: Beyond Stress and Coping to Growth” www.pallpedsnet.ca. She has led round table discussions at ELNEC trainings, served on Initiative for Pediatric Palliative Care parent panels, and continues to lend her voice to the dialogue of pediatric palliative care.

Margaret D’Arrigo-Martin, Alexis’ mom

Margaret D’Arrigo-Martin, Executive Vice President of D’Arrigo Brothers Company and mother of three children (Alexis Claire Martin – deceased 2003, SIDS victim) and Alex and Sterling, twins, 2-1/2 years of age, was recently awarded the 14th annual Woman of the Year by Ag Against Hunger for her outstanding community service to issues that effective the lives of women and children. Our Incredible Team

Paola Bruni, Grants Management and Strategic Planning
Phone: 831-662-4520
writepath@sbcglobal.net

Lisa Buell, Parent Advocate, Partnership for Parents
roleena@gmail.com

Lori Butterworth, Executive Director
Cell: 831-239-2015
lori@childrenshospice.org
news@childrenshospice.org (goes to both Lori and Devon)

Lori Butterworth
Lori Butterworth has founded two award-winning, nationally recognized non-profit organizations, which have dramatically improved care for thousands of children with life-threatening conditions and their families. As the founder and former Executive Director of Jacob’s Heart Children’s Cancer Association, Lori designed, implemented and secured sustainable funding for innovative programs for families of children with cancer, more than doubling projected revenue for the organization for three consecutive years. She led the campaign in 1999 that officially established September as Children’s Cancer Awareness Month in the State of California by executive order. Her many awards for leadership at Jacob’s Heart include the Soroptimist “Woman of Distinction Award for Health” and Oprah Winfrey’s Angel Network “Use Your Life Award” which included a $100,000 grant to the organization (2000).

In 2001, Lori co-founded the Children’s Hospice and Palliative Care Coalition (CHPCC), and currently serves as Executive Director along with Devon Dabbs. Together Lori and Devon have spearheaded healthcare policy initiatives including the enactment of the Nick Snow Children’s Hospice and Palliative Care Act of 2006. This landmark legislation, which was signed into law by Governor Schwarzenegger, creates an entirely new hospice and palliative care benefit for children in California. In 2007, Lori and Devon formed an alliance with the National Hospice and Palliative Care Organization to develop “Partnering for Children,” a national public engagement campaign which includes resources and tools to raise national awareness about the unique needs of children with life-threatening conditions.

Under the leadership of Lori and Devon, CHPCC has been the recipient of numerous awards including California Association of Non profits “Achievement in Innovation” for development of creative, successful program strategies (2007), the End of Life Nursing Education Consortium Palliative Care Award for “outstanding leadership, commitment, and advocacy in improving end-of-life and palliative care for children and their families” (2007), and the Robert Wood Johnson Foundation “Award of Excellence” for the Western United States for an organization that has best “identified community needs for better care near the end of life, advocated for health system changes to bring about better care and developed and effectively implemented specific projects to do so” (2004). In 2007, Lori and Devon were named Santa Cruz County Women of the Year.

As a bilingual educator, Lori has developed curriculum and taught Spanish Language Arts and Literature, Social Studies and Government in the Los Angeles and Oakland inner-city schools for more than a decade. She was instrumental in establishing a public high school for girls in rural Guatemala. Her linguistic skills and appreciation of cultural diversity have enabled her to bring about dramatic change and unity in diversely populated communities throughout the world.

Lori currently volunteers as an advisor and expert on various committees and boards specializing in non-profit organizational management, fund development, Latino outreach and pediatric hospice and palliative care, including the National Advisory Committee for Caring Connections for National Hospice and Palliative Care Organization, and the Mensajeros de Confianza of Hospice of Santa Cruz, designed to open access to quality end of life care for Latinos.

Terri Cowger-Hill, Lobbyist/Advocate
1127 11th St. Suite 426
Sacramento, CA 95814
(916) 446-9103
terricowger@aol.com

Devon Dabbs, Executive Director
Cell: 831-212-1581
devon@childrenshospice.org
news@childrenshospice.org (goes to both Lori and Devon)

Devon Dabbs
Devon Dabbs is the Co-Founder of the Children’s Hospice and Palliative Care Coalition (CHPCC) and currently serves as Executive Director along with Lori Butterworth. Devon, along with Lori, has spearheaded policy initiatives and created programs, which are dramatically improving care for children with life-threatening conditions in California, including the enactment of the Nick Snow Children’s Hospice and Palliative Care Act of 2006. This landmark legislation, which was signed into law by Governor Schwarzenegger, creates an entirely new hospice and palliative care benefit for children in California. In 2007, Devon and Lori formed an alliance with the National Hospice and Palliative Care Organization to develop “Partnering for Children,” a national public engagement campaign which includes resources and tools to raise national awareness about the unique needs of children with life-threatening conditions.

CHPCC has been the recipient of numerous awards including California Association of Non profits “Achievement in Innovation” for development of creative, successful program strategies (2007), the End of Life Nursing Education Consortium Palliative Care Award for “outstanding leadership, commitment, and advocacy in improving end-of-life and palliative care for children and their families” (2007), and the Robert Wood Johnson Foundation “Award of Excellence” for the Western United States for an organization that has best “identified community needs for better care near the end of life, advocated for health system changes to bring about better care and developed and effectively implemented specific projects to do so” (2004). In 2007, Devon and Lori were named Santa Cruz County Women of the Year.

An award-winning documentarian and television media and marketing executive, Devon has been a long-time advocate on behalf of children in crisis. Her film credits include Walter Cronkite’s four-part series “Victory over Violence,” and the Peabody Award-winning CBS documentary “Break the Silence: Kids Against Child Abuse,” where in her role as segment producer she initiated a national educational campaign distributing resource materials and videos to more than 90,000 schools across the country.

Devon has coordinated and launched numerous national and international communication campaigns for both network and syndicated programming, including the 50th and 51st annual Emmy Awards. She has also spearheaded media campaigns on behalf of the American Red Cross and the Conrad N. Hilton Foundation, among others. She was instrumental in the launch of the Hilton Foundation’s 1st Annual International Humanitarian Conference in conjunction with the $1.5 million Hilton Humanitarian Prize, awarded annually to an organization making extraordinary contributions toward alleviating human suffering anywhere in the world. It was in this capacity she has coordinated campaigns on behalf of St. Christopher’s Hospice, Doctors without Borders, International Rescue Committee, and Heifer International, among others.

Devon currently serves on the California Hospice and Palliative Care Association and California Hospice Foundation boards and the Hospice of the Valley advisory council.

Ellinore Hall, Health Policy Consultant

ElliHall@comcast.net
Ann Morris, Communications and Media
annandrewsmorris@comcast.net

Sharon O’Neil, Program Coordinator
Sharon@childrenshospice.org

Sharon joined the Children’s Hospice and Palliative Care Coalition team in October 2006 after spending 6 years with Jennifer Scarbrough of Zia Jewelry as an administrative assistant. She brings 15 years of administrative experience and tends to wear a variety of hats around the CHPCC office. As program coordinator she fills the roles of conference coordinator, bookkeeper, volunteer coordinator as well as staffing events.
Sharon has a degree in psychology from the University of California, Santa Cruz with extended studies in graphic design. She was a freelance graphic artist prior to the birth of her daughter. An avid walker, hiker, and tennis player, she shares her love of sports and fitness with her 20 year old daughter, a kinesiology major at California State University Monterey Bay.
“The beauty in life can be found in holding the hand of a child”

Sophia Schultz, Nurse Care Coordinator, Program Director Partnership for Children
Sophia@childrenshospice.org

Shoshana Spielman, Nurse Care Coordinator
Shoshana@childrenshospice.org

Shoshana Spielman, RN brought her love of Hispanic culture, bilingual skills, and her extensive background in hospice and end-of –life care to the Partnership for Children in 2005. She has been working for over 20 years in palliative care, with the last seven being focused on children with life-threatening illnesses.

At Partnership for Children, Shoshana works as a nurse care coordinator. Her role includes coordinating care for children and their families with community services, agencies, and hospitals. She assists with the families’ transportation needs, attends medical appointments as needed, provides emotional and spiritual support along the treatment road, as well as funeral guidance and bereavement support. She thoroughly enjoys advocating for those in need.

Recently, Shoshana received her certification as a Buddhist chaplain, which is an important part of her life. She works for peace and justice issues within the Buddhist Peace Fellowship and revels in her self-retreats in the beautiful Sierra Nevadas. Winters award her time with her Mexican family south of the border.

Gay Walker, RN – Southern California Liaison
Southern California Pediatric Palliative Care Network
Project Coordinator, BEST in Pediatrics
c/o Trinity Kids Care Hospice
2601 Airport Drive, Ste. 230
Torrance, CA 90505
Gay.a.walker@providence.org