Impact Calendar

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October 2023

Event

Guest Speaker – October 7, 2023

September 2023

Inaugural Fall Breakfast

Guest Speaker – September 28, 2023

Launch Event – September 21, 2023 Launch Event Recording https://childrensrespitehomes.org/unite-for-medically-fragile-children-launch-event-recap/

August 2023

Guest Speaker: Abigail E Keller Foundation – August 12, 2023

The night honored Abigail Elizabeth Keller, the inspiration and namesake behind the impactful Austin-based nonprofit. Providing essential tools and services to medically fragile children and their families, including community outreach programs, financial grants for items not covered by insurance and Family Care packages for those entering hospice programs, the organization has raised more than $400,000 since their inception in 2019.

The annual gala also acts as a vital source of funding for the Foundation’s current mission of building Central Texas’ first pediatric respite/hospice facility.

“Our greatest mission is to change the narrative around hospice care for children and instead help families to cherish time with the ones they love most,” says the Foundation’s president, Melissa Keller. “This facility will serve as a safe space staffed with trained professionals, that is a comfortable setting outside of the home or hospital. Such a space is vital to families, especially those with other children at home, and there is currently nothing like this available in Texas.”

Emceed by 1998 Miss Texas USA Holly Mills-Gardner, the program included a key note speech from Ryan’s House’s Jonathan Cottor on his experience building one of only three pediatric respite/hospice homes in the entire country. With the goal to establish the same groundbreaking care for Central Texans, Abigail’s parents Melissa and Travis continue to spread the same light as their daughter with neighbors in need.

February 2023

Guest Speaker: Arizona College of Nursing – February 15, 2023

Sharing his lived experiences as a dad of a child diagnosed with Spinal Muscular Atrophy, Jonathan wove his family story of Ryan’s birth, diagnosis and introduction to the Helen House care model during their years in England and how it impacted their return to Arizona and the founding of Ryan House. The nursing students learned how these freestanding pediatric palliative care homes fill a missing gap in a community’s care continuum, and the crucial roles that nurses play in not only providing care but also as leaders in this rapidly developing field of pediatric palliative care. He updated them to the exciting progress being made in the newly formed National Center for Pediatric Palliative Care Homes, and the vision to support expansion of U.S. home-based care providers.

The nursing labor shortage can be felt even more dramatically within U.S. home health agencies, as many new RN graduates pursue careers in hospitals that often pay significantly higher wages. A goal of Jonathan’s time with the Nursing students was to highlight the value of relationships and quality of care connections that are made between nursing professionals and children with life-limiting conditions and their families, and to encourage consideration for pursing home-based careers. For many, it is a calling!

September 2022

National Lifespan Respite Conference: Reimagine Respite – September 14, 2022

Conference Breakout Session: Recharge caregivers by filling gap in unmet overnight respite thru scaling Children’s Hospice Homes

Presenter: Jonathan Cottor, NCPPCH Leadership

Communities fortunate enough to have a Children’s Hospice Home are reimagining a solution to meet the unmet overnight respite needs of family caregivers. A ground-breaking national center of excellence has formed in 2022, to promote the scaling of community-based pediatric palliative and hospice programs, including Children’s Hospice Homes. Learn and be inspired to connect and engage.

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March 2022

PediPal

Episode 13: House Away From Home

As Sarah and Dan continue their international tour in 2022, they find themselves surprisingly close to home in Phoenix, Arizona... by way of England, and by way of an inspiring story of community, advocacy, and ingenuity.

In this Episode your PediPal crew hears the story of the Cottor family and the founding of Ryan House, as well as the hopes for the future of pediatric hospice houses in the USA. And they learn some of the logistical challenges on the other side of their common "If I won the lottery..." fantasy.

September 2021

ARCH cohosted this event with the BREAK Exchange – September 1, 2021

Webinar: Sleep is #2: How U.S. Children’s Hospice Homes are fulfilling the unmet need for overnight respite

Presenter: Jonathan Cottor, Like House Coalition

The #1 wish that all families with a child on a life-limited journey wants is a cure, next is some sleep. The U.K. Children’s Hospice Home model started almost 40 years ago with Helen House and has grown to over 54 homes today. A simple concept that focuses on family and caregiver support by providing overnight respite, and pediatric palliative and end-of-life hospice care throughout a child’s journey. Thankfully three communities have succeeded in opening this much needed care model in the U.S., and many more are in various stages of development.

The presenter, Jonathan Cottor, will provide insights from his own family experience at Helen House and decades as a national advocate and champion for this model.

In this webinar, learn the status of the U.S. Children’s Hospice Home movement:

·What services this model provides, and how it is an important part of the continuum of care to meet unmet needs for families whose children have chronic and complex medical conditions.