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Published Writer

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

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

Quotes
Media Profiles

Media Profiles

Star Tribune

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No Where to Die

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

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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

Family Profile

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

Family Profile 

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

Podcast

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

Article

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

Parent Advocate
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