Published Writer
works published beyond the MamaShu blog
Minnesota Coalition for Death Education & Support
Co-wrote and article “Crescent Cove to Open: A Special Resource for Children and Families” with Ted Bowman, International grief educator. September 2017
National Hospice & Palliative Care Organization, Pediatric E-Journal
(formerly ChiPPS eJournal)
Issue #57: Myth Busting
Article "Freight Trains & Airplanes, Conversations about Child Loss" November 2019
Issue #56 Integrative and Complimentary Therapies - Part Two
Article "Stories from the Front Lines: How Integrative Medicine has Allowed me to Better Care for my Child with Medical Complexities" August 2019
Issue #55 Integrative and Complimentary Therapies - Part One
Article "Parent Realities: Navigating the Use of Integrative Therapies for a Child with Medical Complexities" May 2019
Issue #48: Spiritual Care of Children and their Families
Article “A Mother's Perspective on Palliative Spiritual Care: What Helped, What is Still Needed" August 2017
Issue #43 Bereavement and Care, Part 2. Article "A Letter to My Child's Care Team" October 2015
This E-Journal is produced by ChiPPS (the Children’s Project on Palliative/Hospice Services), a program of the National Hospice and Palliative Care Organization and, in particular, by NHPCO’s E-Journal Workgroup.
Pediatric Home Service (guest blogger)
Palliative WHO? Meet the Sherpas who help us Navigate the Diagnosis of Uncertainty This article was later used by Gillette Children's Palliative Care program during a team enrichment retreat. January 2017
Palliative WHAT? Understanding the team that keeps my son out of the hospital November 2016
Five Minutes that Changed my Life for the Better
Featuring the family respite retreats offered by Faith's Lodge (WI) for children with medical complexities. April 2017
National Institute of Nursing Research, National Institutes of Heath; Palliative Care Conversations Matter(R) Campaign
Family Profile Article about the impact of palliative care from birth through age 4 years old for Levi. Article was selected from a national pool of applicants and featured in their “Family Stories” publication. June 2015
Minnesota Network of Hospice & Palliative Care
Loving Levi: a Mother's Perspective on the Arrival of Spring Article for eAlert. May 2014
Family Profile Article: Invitation to write a narrative of the value of palliative care in the context of Levi's first four years of life for their website. Article is featured on their website within pediatric palliative care. March 2014
Legislative Advocate
Educating Minnesota's Legislators
Invited by the MN Network of Hospice and Palliative Care to meet with legislators to educate them about hospice care, palliative care and talk about the needs within pediatrics. March 2018
Establishing MN's Palliative Care Advisory Council
As a member of the MN Palliative Care Coalition, I participated in crafting the language of the bill and advocating for it's passage to establish Minnesota's first Palliative Care Advisory Council. Spring 2017
Expanding Hospice Licensure to include Pediatrics
As a member of the Pediatric Palliative Care Coalition of Minnesota, I participated in a process of bringing together hospice stakeholder across MN to modify the hospice licensure language to include pediatric hospice and respite care. This modification was needed in advance of Crescent Cove opening a facility for children and families. Spring 2016
Roundatble with Senator Al Franken
Invited by the Minnesota Network for Hospice and Palliative care to be one of ten people participating in a roundtable discussion with Senator Al Franken at Our Lady of Peace. Shared Levi's story and the impact of palliative care in our lives. Had the opportunity to speak one-on-one with Senator Franken. I was the only caregiver/parent/community member at the table. September 2015
New Funding for the Commission of Deaf, Deafblind, & Hard of Hearing Minnesotians
Invited by the Commission to give legislative testimonies for the following Committees and Bills:
** MN House Health and Human Services Reform Committee, HF1341.
** MN Senate Health and Human Services Reform Committee, SF1272.
** MN Health and Human Services Finance Committee
Bill was included in the Omnibill and provided new funding of $2million over 2 years to support the needs of children and adults with deafblindness. Spring 2015
“Senator Franken leaned in and listened carefully to you as you told him about Levi, Peter and Leo. The Senator is going to remember you and certainly your compelling words. I am so grateful for your presence. You bring light with you and warmth and such immense commitment to and passion for Levi and for the work we all do. Thank you Dannell - you are a gift.”
Susan Marschalk
Executive Director
Minnesota Network of Hospice and Palliative Care
You are one of the strongest speakers I have heard. You have a gift for putting words together in a way that helps us understand.”
Rep. Diane Loeffler
Minnesota House of Representatives
“Thank you again for making arrangements to come and share your powerful story with the committees. Committee members hear so many bills and so much testimony that it is often difficult to actually get their attention, but you had them rapt. Your testimony will be remembered and will make a difference when the committee decides what to include in their budget later this session.”
Beth Fraser
Government Relations Director,
Commission of Deaf, DeafBlind, & Hard of Hearing Minnesotians
Media Profiles
Star Tribune
Article and short film in the Sunday Variety section focused on Levi as an example of the need for Crescent Cove's hospice and respite home for children and families. December 2015
Fox 9 News
Interview
Highlighting Levi's story and the need for Crescent Cove's hospice home for kids in MN during the Twins Game honoring Harmon Killabrew. Video segment aired several times over a 3 day weekend. May 2014
Crescent Cove
Article written by MamaShu and video by Crescent Cove about the need for a hospice and respite home for children in Minnesota. Video used for education and fundraising.
Minnesota Network of Hospice and Palliative Care
Article written by MamaShu about Levi highlighting the importance of pediatric palliative care. Article used for educating the public and providers.
Get Palliative Care: Center to Advance Palliative Care
Caring for a Child with Serious Illness: The Shu's Palliative Care Story. This podcast interview features MamaShu and Jody Charastek RN, DNP, CHPN. Used for educating the public about the importance of palliative care for children.
National Institute of Nursing Research
Written by MamaShu and 1 of 4 selected from a national pool of profiles, this article was featured in NIH's Palliative Care, Conversations Matter(r) Campaign's publication "A Family's Perspective, Pediatric Palliative Care Stories." Levi's story highlights the importance of including palliative care at time of diagnosis. Used for educating nurses.
Palliative Care offers families facing significant health challenges, the opportunity for customized care with creative coordinated team-based approaches that consider a family's values, culture, structure, and faith.
MamaShu
Parent Advocate
National Pediatric Palliative Care Task Force (established 2020 by National Coalition for Hospice and Palliative Care) Parent Advocate member. Work Group: Payment & Financing
Minnesota Palliative Care Advisory Council (established 2017 by MN Legislature) Caregiver member since 2017, appointed by the Commissioner, MN Department of Health.
Work Groups: Policy, Research / Data / Metrics, Council Membership
PPCCMN: Pediatric Palliative Care Coalition of MN
Parent Advocate member since 2014, Article coordinator since 2016
Brighter Days Grief Center
Parent Adviser on behalf of families who have a child with medical complexities, since 2018
PACCT: Fairview Home Care and Hospice Pediatric Advanced and Complex Care Team A Program Advisory Committee at the University of Minnesota. Parent Advocate member 2014-2019.
Mobilizing Palliative Care Awareness
Participated in this event hosted by the MN Network of Hospice and Palliative Care. A forum to identify ways and words for consistent communication messaging about palliative care to the public. October 2014