The Meaningful Change Series looks at the ways in which the knowledge found within the SCN8A community can be leveraged to better support all of our children.
*recordings will be added after each event
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Meaningful Change 2024Caregivers Crossroads: Navigating Tough Conversations and Tougher Choices
May 10, Friday | 1-2 pm EST
May 22, Wednesday | 1-2 pm EST June 4, Tuesday | 6-7 pm EST June 10, Monday | 3-4 pm EST
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Understanding Loss and Grief in SCN8A: Navigating Challenges and Finding Support
Friday, May 10th
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Families living with an SCN8A diagnosis frequently are confronted with experiences of deep loss and grief, both during the child's life and after. There are many types of loss and grief that are common to our community, but which often are not well understood outside of the medically complex world. We will be discussing these experiences, talking about the importance of self-care, and highlighting the ongoing support programs that TCSF offers for SCN8A families.
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Liz Ramirez, The Cute Syndrome Foundation
Liz is a trained counselor with an advanced degree in marriage, child, and family therapy. In her capacity as a TCSF volunteer, she provides bereavement support and grants advising to the foundation. Liz is the mom of SCN8A warrior Will, who died of SUDEP in 2017 at the age of 7.
Liz is a trained counselor with an advanced degree in marriage, child, and family therapy. In her capacity as a TCSF volunteer, she provides bereavement support and grants advising to the foundation. Liz is the mom of SCN8A warrior Will, who died of SUDEP in 2017 at the age of 7.
Decisions, Decisions, and More Decisions
Wednesday, May 22nd
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Parents of medically complex children have to make a myriad of decisions, big and small, every day. It's fatiguing. Understanding how you process decisions, and recognizing how your child's providers support your decisions can help mitigate feelings of overwhelm, fear of regrets, and create an environment where decisions can feel shared.
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Jennifer Siedman, MEd, Courageous Parents Network
Jennifer is the Director of Community Engagement for Courageous Parents Network (CPN), a non-profit whose mission is to orient and empower parents and others caring for children with serious medical conditions by providing resources and tools that reflect the experience and perspective of families and clinicians. She brings her experience as an educator and development professional to her role in engaging patient and caregiver organizations, industry partners and healthcare clinicians. A bereaved mom, she serves as president of Ben’s Dream: Sanfilippo Research Foundation and has worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage.
Jennifer is the Director of Community Engagement for Courageous Parents Network (CPN), a non-profit whose mission is to orient and empower parents and others caring for children with serious medical conditions by providing resources and tools that reflect the experience and perspective of families and clinicians. She brings her experience as an educator and development professional to her role in engaging patient and caregiver organizations, industry partners and healthcare clinicians. A bereaved mom, she serves as president of Ben’s Dream: Sanfilippo Research Foundation and has worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage.
What is Palliative Care, Really?
Tuesday, June 4th
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What is palliative care, REALLY? Hospice care? Concurrent care? Too often these services are misunderstood, creating fear and anxiety in families and hesitancy by providers to recommend them. Come learn about each—how they can support your care goals and help make each day as good as it can be for your child and family.
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Maria Hopfgarten, CPN Champion, Courageous Parents Network
Maria Hopfgarten is originally from Sweden and carries a degree in Journalism from Stockholm University. Maria lives with her husband, daughter Sarah, and rescue dog Max in Denver, Colorado. She lost her son Jacob at age ten years old to mitochondrial disease. Maria has been supporting families living with mitochondrial disease for over a decade including being the President of the former non-profit Miracles for Mito. Maria’s journey with Jacob has now led her to be a Parent Champion of Courageous Parents Network, and during the day she works for Thermo Fisher Scientific managing their translation needs globally.
Maria Hopfgarten is originally from Sweden and carries a degree in Journalism from Stockholm University. Maria lives with her husband, daughter Sarah, and rescue dog Max in Denver, Colorado. She lost her son Jacob at age ten years old to mitochondrial disease. Maria has been supporting families living with mitochondrial disease for over a decade including being the President of the former non-profit Miracles for Mito. Maria’s journey with Jacob has now led her to be a Parent Champion of Courageous Parents Network, and during the day she works for Thermo Fisher Scientific managing their translation needs globally.
Jennifer Siedman, MEd, Courageous Parents Network
Jennifer is the Director of Community Engagement for Courageous Parents Network (CPN), a non-profit whose mission is to orient and empower parents and others caring for children with serious medical conditions by providing resources and tools that reflect the experience and perspective of families and clinicians. She brings her experience as an educator and development professional to her role in engaging patient and caregiver organizations, industry partners and healthcare clinicians. A bereaved mom, she serves as president of Ben’s Dream: Sanfilippo Research Foundation and has worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage.
Jennifer is the Director of Community Engagement for Courageous Parents Network (CPN), a non-profit whose mission is to orient and empower parents and others caring for children with serious medical conditions by providing resources and tools that reflect the experience and perspective of families and clinicians. She brings her experience as an educator and development professional to her role in engaging patient and caregiver organizations, industry partners and healthcare clinicians. A bereaved mom, she serves as president of Ben’s Dream: Sanfilippo Research Foundation and has worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage.
Peeking Around the Corner at the Impossible: Advance Care Planning and Powering Up to Accompany Your Child at End of Life
Monday, June 10th
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This session explains what advance care planning is and how exploring what is important to you and your family, including a framework for making difficult decisions, can demystify much of what we parents fear when considering the possibility that our child will die. Following the adage of 'name it to tame it,' this session also offers practical resources to help you prepare for what may come and feel more empowered to be present at your child's side.
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Pat O'Malley, MD
Pat has cared for children with medical complexity and their families throughout her 40 plus years as a pediatric intensivist, emergency physician, and palliative care physician. She currently serves as medical advisor to the MassGeneral for Children Bereavement Program.
Pat has cared for children with medical complexity and their families throughout her 40 plus years as a pediatric intensivist, emergency physician, and palliative care physician. She currently serves as medical advisor to the MassGeneral for Children Bereavement Program.
Blyth Lord, MEd, Courageous Parents Network
Blyth is the mother of three daughters. Her second daughter, Cameron, was diagnosed at 6 months with infantile Tay-Sachs disease and passed away at age 2. Blyth is the founder of Courageous Parents Network, whose mission is to orient, empower and equip parents caring for children with serious medical conditions. She is a passionate advocate for palliative care, from diagnosis onwards. She sits on the board of the patient disease group National Tay-Sachs and Allied Disease.
Blyth is the mother of three daughters. Her second daughter, Cameron, was diagnosed at 6 months with infantile Tay-Sachs disease and passed away at age 2. Blyth is the founder of Courageous Parents Network, whose mission is to orient, empower and equip parents caring for children with serious medical conditions. She is a passionate advocate for palliative care, from diagnosis onwards. She sits on the board of the patient disease group National Tay-Sachs and Allied Disease.
Watch the Event Recordings
Spring 2021
Spring 2023
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