In this episode of the CdLS Connections Podcast, we sit down with Marci Dunning—mom to Freya and creator of Freya’s Lucky Arm—for an honest and heartfelt conversation about parenting, resilience, and showing up authentically. Marci shares her journey raising Freya, the power of confidence and advocacy, and what it means to live openly and unapologetically in the rare disease community. Her story is a reminder of the strength, love, and connection that brings families together. This episode also available on YouTube: <a href='https://youtu.be/2xhz_t-zj0A'>https://youtu.be/2xhz_t-zj0A</a>Follow Marci &amp; Freya: Instagram, TikTok &amp; Facebook: @freyasluckyarm YouTube: Freya’s Lucky Arm#CdLS #RareDisease #ParentingJourney #Advocacy #FreyaLuckyArm<a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new">Send us Fan Mail</a><a rel="payment" href="https://www.buzzsprout.com/1774404/support">Support the show</a>Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.(c) Canadian CdLS Foundation. All Rights Reserved.

<description>&lt;p&gt;In this episode of the CdLS Connections Podcast, we sit down with Marci Dunning—mom to Freya and creator of Freya’s Lucky Arm—for an honest and heartfelt conversation about parenting, resilience, and showing up authentically.&lt;br/&gt;Marci shares her journey raising Freya, the power of confidence and advocacy, and what it means to live openly and unapologetically in the rare disease community. Her story is a reminder of the strength, love, and connection that brings families together.&lt;/p&gt;&lt;p&gt;&lt;br/&gt;This episode also available on YouTube: &lt;a href='https://youtu.be/2xhz_t-zj0A'&gt;https://youtu.be/2xhz_t-zj0A&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Follow Marci &amp;amp; Freya: Instagram, TikTok &amp;amp; Facebook: @freyasluckyarm&lt;br/&gt;YouTube: Freya’s Lucky Arm&lt;/p&gt;&lt;p&gt;#CdLS #RareDisease #ParentingJourney #Advocacy #FreyaLuckyArm&lt;/p&gt;&lt;p&gt;&lt;a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new"&gt;Send us Fan Mail&lt;/a&gt;&lt;/p&gt;&lt;p&gt;&lt;a rel="payment" href="https://www.buzzsprout.com/1774404/support"&gt;Support the show&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.&lt;/p&gt;&lt;p&gt;Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&amp;apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.&lt;/p&gt;&lt;p&gt;(c) Canadian CdLS Foundation. All Rights Reserved.&lt;/p&gt;</description>

In this episode of the CdLS Connections Podcast, we sit down with Marci Dunning—mom to Freya and creator of Freya’s Lucky Arm—for an honest and heartfelt conversation about parenting, resilience, and showing up authentically. Marci shares her journey raising Freya, the power of confidence and advocacy, and what it means to live openly and unapologetically in the rare disease community. Her story is a reminder of the strength, love, and connection that brings families together.  This episode a...

Ep.#17 💜 Family Series: Marci Dunning - Freya's Mother

Maria Watkins is a mother of five children, their middle child Ella was born with CdLS. Her and her husband live near Sioux City, Iowa, USA. They have a small farm, juggle work, a business, and their busy family and have recently started on their fitness journey. Maria shares Ella&apos;s early years and how a serious medical emergency helped her in finally accepting the diagnosis of CdLS. Maria shares the meaning of writing her blog in the early days and how circumstances moved her to entrepreneurship while her and her husband continued to ensure family and children remained their priority.You can find Maria&apos;s blog &quot;Life on M Avenue&quot; here: <a href='https://www.mavenuephotography.com/lifeonmavenue'>https://www.mavenuephotography.com/lifeonmavenue</a>Her photography can be found here: <a href='https://www.mavenuephotography.com/?fbclid=IwY2xjawNbXl1leHRuA2FlbQIxMABicmlkETBOc1ZsaHJ0N29YRGN6dWlZAR7q6jf6xXPFLiTUfqjR_L5XU5HcvNDcUhX2vSDZDgVRzfvlaT2mzDtqt40jDQ_aem_ieGuxcGlMsLQW5M5zcYw0A'>https://www.mavenuephotography.com</a>Strumming guitar performed by Tami Pfalzgraf @cdlsdads <a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new">Send us Fan Mail</a><a rel="payment" href="https://www.buzzsprout.com/1774404/support">Support the show</a>Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.(c) Canadian CdLS Foundation. All Rights Reserved.

<description>&lt;p&gt;Maria Watkins is a mother of five children, their middle child Ella was born with CdLS. Her and her husband live near Sioux City, Iowa, USA. They have a small farm, juggle work, a business, and their busy family and have recently started on their fitness journey. Maria shares Ella&amp;apos;s early years and how a serious medical emergency helped her in finally accepting the diagnosis of CdLS. Maria shares the meaning of writing her blog in the early days and how circumstances moved her to entrepreneurship while her and her husband continued to ensure family and children remained their priority.&lt;/p&gt;&lt;p&gt;You can find Maria&amp;apos;s blog &amp;quot;Life on M Avenue&amp;quot; here: &lt;a href='https://www.mavenuephotography.com/lifeonmavenue'&gt;https://www.mavenuephotography.com/lifeonmavenue&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Her photography can be found here: &lt;a href='https://www.mavenuephotography.com/?fbclid=IwY2xjawNbXl1leHRuA2FlbQIxMABicmlkETBOc1ZsaHJ0N29YRGN6dWlZAR7q6jf6xXPFLiTUfqjR_L5XU5HcvNDcUhX2vSDZDgVRzfvlaT2mzDtqt40jDQ_aem_ieGuxcGlMsLQW5M5zcYw0A'&gt;https://www.mavenuephotography.com&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Strumming guitar performed by Tami Pfalzgraf @cdlsdads&lt;/p&gt;&lt;p&gt;&lt;br/&gt;&lt;/p&gt;&lt;p&gt;&lt;a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new"&gt;Send us Fan Mail&lt;/a&gt;&lt;/p&gt;&lt;p&gt;&lt;a rel="payment" href="https://www.buzzsprout.com/1774404/support"&gt;Support the show&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.&lt;/p&gt;&lt;p&gt;Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&amp;apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.&lt;/p&gt;&lt;p&gt;(c) Canadian CdLS Foundation. All Rights Reserved.&lt;/p&gt;</description>

Maria Watkins is a mother of five children, their middle child Ella was born with CdLS. Her and her husband live near Sioux City, Iowa, USA. They have a small farm, juggle work, a business, and their busy family and have recently started on their fitness journey. Maria shares Ella's early years and how a serious medical emergency helped her in finally accepting the diagnosis of CdLS. Maria shares the meaning of writing her blog in the early days and how circumstances moved her to entrepreneur...

Ep. #16 💜 Family Series: Maria Watkins & Ella- "Life on M Avenue"

Join us for a conversation with Dawn Seitz Rauscher as she shares her journey and  her life with Nikki who passed away ten years ago at the age of 17. Nikki’s memory and legacy lives on in her family, community and the global CdLS Community.<a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new">Send us Fan Mail</a><a rel="payment" href="https://www.buzzsprout.com/1774404/support">Support the show</a>Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.(c) Canadian CdLS Foundation. All Rights Reserved.

<description>&lt;p&gt;Join us for a conversation with Dawn Seitz Rauscher as she shares her journey and  her life with Nikki who passed away ten years ago at the age of 17. Nikki’s memory and legacy lives on in her family, community and the global CdLS Community.&lt;/p&gt;&lt;p&gt;&lt;a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new"&gt;Send us Fan Mail&lt;/a&gt;&lt;/p&gt;&lt;p&gt;&lt;a rel="payment" href="https://www.buzzsprout.com/1774404/support"&gt;Support the show&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.&lt;/p&gt;&lt;p&gt;Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&amp;apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.&lt;/p&gt;&lt;p&gt;(c) Canadian CdLS Foundation. All Rights Reserved.&lt;/p&gt;</description>

Join us for a conversation with Dawn Seitz Rauscher as she shares her journey and  her life with Nikki who passed away ten years ago at the age of 17. Nikki’s memory and legacy lives on in her family, community and the global CdLS Community. Send us Fan Mail Support the show Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation. Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and...

Ep. #15 - 💜 Family Series: Dawn Seitz Rauscher - Team Nikki

Join us for a webinar presented by Dr. Peggy Marcon M.D. and Kelsey Gallagher R.D. of Sick Kids Toronto at the US CdLS Virtual Conference in 2020 where you will learn about what is Blenderized Tube Feed diet, how to transition, findings from research and first hand parent experience.The quality of the audio is less than optimal due to the recording of a live virtual event. We recommend you download the slides to view along with the presentations <a href='https://www.canadiancdlsfoundation.com/webinars'>here</a>, or watch the webinar on our <a href='https://www.youtube.com/watch?v=vjYrJoq9ueU'>YouTube channel</a>.<a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new">Send us Fan Mail</a><a rel="payment" href="https://www.buzzsprout.com/1774404/support">Support the show</a>Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.(c) Canadian CdLS Foundation. All Rights Reserved.

<description>&lt;p&gt;Join us for a webinar presented by Dr. Peggy Marcon M.D. and Kelsey Gallagher R.D. of Sick Kids Toronto at the US CdLS Virtual Conference in 2020 where you will learn about what is Blenderized Tube Feed diet, how to transition, findings from research and first hand parent experience.&lt;/p&gt;&lt;p&gt;The quality of the audio is less than optimal due to the recording of a live virtual event. We recommend you download the slides to view along with the presentations &lt;a href='https://www.canadiancdlsfoundation.com/webinars'&gt;here&lt;/a&gt;, or watch the webinar on our &lt;a href='https://www.youtube.com/watch?v=vjYrJoq9ueU'&gt;YouTube channel&lt;/a&gt;.&lt;/p&gt;&lt;p&gt;&lt;a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new"&gt;Send us Fan Mail&lt;/a&gt;&lt;/p&gt;&lt;p&gt;&lt;a rel="payment" href="https://www.buzzsprout.com/1774404/support"&gt;Support the show&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.&lt;/p&gt;&lt;p&gt;Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&amp;apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.&lt;/p&gt;&lt;p&gt;(c) Canadian CdLS Foundation. All Rights Reserved.&lt;/p&gt;</description>

Join us for a webinar presented by Dr. Peggy Marcon M.D. and Kelsey Gallagher R.D. of Sick Kids Toronto at the US CdLS Virtual Conference in 2020 where you will learn about what is Blenderized Tube Feed diet, how to transition, findings from research and first hand parent experience. The quality of the audio is less than optimal due to the recording of a live virtual event. We recommend you download the slides to view along with the presentations here, or watch the webinar on our YouTube chan...

Ep. #14 -💜🏥 Clinical Series: Dr. Peggy Marcon- Blenderized G-Tube Feeds for CdLS

In this deeply personal episode of CdLS Connections, Ken Pfalzgraf shares the life and legacy of his daughter Tami, who passed away at age 18 in late 2024 due to complications related to a gastric duplicative cyst associated with Cornelia de Lange Syndrome (CdLS).Ken reflects on fatherhood, advocacy, music, partnership, and the emotional reality of navigating complex medical systems. Through Tammi’s story, this conversation explores both the joy of raising a child with CdLS and the painful realities of medical dismissal and serious GI complications.Tami’s original music is featured throughout this episode.⚠️ Content Note: This episode contains discussion of death and dying, which may be sensitive for some listeners.In This Episode, We Discuss:• Gastrointestinal complications in CdLS, including gastric duplicative cysts • Recognizing when a child’s symptoms may be dismissed • The emotional toll of medical decision-making • Fatherhood and partnership in raising a medically complex child • Education systems and advocating for your child’s potential • Music as connection, expression, and legacyWhy This Episode MattersGI complications remain one of the most serious medical concerns in individuals with CdLS. Hearing directly from a parent who experienced these challenges offers invaluable insight for:<ul><li>Families navigating grief, sudden death, and advocacy</li><li>Clinicians working with medically complex patients</li><li>Educators supporting students with rare conditions</li><li>Advocates seeking improved awareness and listening within healthcare</li></ul>This episode bridges lived experience and clinical realities — reminding us that behind every diagnosis is a full and meaningful life.Support CdLS Education &amp; AwarenessIf this episode resonated with you, please consider supporting the work of the Canadian CdLS Foundation. Your donation helps keep this podcast free and accessible to families worldwide. <a href='https://www.buzzsprout.com/1774404/supporters/new'>https://www.buzzsprout.com/1774404/supporters/new</a><a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new">Send us Fan Mail</a><a rel="payment" href="https://www.buzzsprout.com/1774404/support">Support the show</a>Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.(c) Canadian CdLS Foundation. All Rights Reserved.

<description>&lt;p&gt;In this deeply personal episode of &lt;em&gt;CdLS Connections&lt;/em&gt;, Ken Pfalzgraf shares the life and legacy of his daughter &lt;b&gt;Tami&lt;/b&gt;, who passed away at age 18 in late 2024 due to complications related to a gastric duplicative cyst associated with Cornelia de Lange Syndrome (CdLS).&lt;/p&gt;&lt;p&gt;Ken reflects on fatherhood, advocacy, music, partnership, and the emotional reality of navigating complex medical systems. Through Tammi’s story, this conversation explores both the joy of raising a child with CdLS and the painful realities of medical dismissal and serious GI complications.&lt;/p&gt;&lt;p&gt;Tami’s original music is featured throughout this episode.&lt;/p&gt;&lt;p&gt;⚠️ &lt;b&gt;Content Note:&lt;/b&gt; This episode contains discussion of death and dying, which may be sensitive for some listeners.&lt;/p&gt;&lt;p&gt;In This Episode, We Discuss:&lt;/p&gt;&lt;p&gt;• Gastrointestinal complications in CdLS, including gastric duplicative cysts&lt;br/&gt;• Recognizing when a child’s symptoms may be dismissed&lt;br/&gt;• The emotional toll of medical decision-making&lt;br/&gt;• Fatherhood and partnership in raising a medically complex child&lt;br/&gt;• Education systems and advocating for your child’s potential&lt;br/&gt;• Music as connection, expression, and legacy&lt;/p&gt;&lt;p&gt;Why This Episode Matters&lt;/p&gt;&lt;p&gt;GI complications remain one of the most serious medical concerns in individuals with CdLS. Hearing directly from a parent who experienced these challenges offers invaluable insight for:&lt;/p&gt;&lt;ul&gt;&lt;li&gt;Families navigating grief, sudden death, and advocacy&lt;/li&gt;&lt;li&gt;Clinicians working with medically complex patients&lt;/li&gt;&lt;li&gt;Educators supporting students with rare conditions&lt;/li&gt;&lt;li&gt;Advocates seeking improved awareness and listening within healthcare&lt;/li&gt;&lt;/ul&gt;&lt;p&gt;This episode bridges lived experience and clinical realities — reminding us that behind every diagnosis is a full and meaningful life.&lt;/p&gt;&lt;p&gt;Support CdLS Education &amp;amp; Awareness&lt;/p&gt;&lt;p&gt;If this episode resonated with you, please consider supporting the work of the Canadian CdLS Foundation. Your donation helps keep this podcast free and accessible to families worldwide.&lt;br/&gt;&lt;a href='https://www.buzzsprout.com/1774404/supporters/new'&gt;https://www.buzzsprout.com/1774404/supporters/new&lt;/a&gt;&lt;/p&gt;&lt;p&gt;&lt;a target="_blank" href="https://www.buzzsprout.com/1774404/fan_mail/new"&gt;Send us Fan Mail&lt;/a&gt;&lt;/p&gt;&lt;p&gt;&lt;a rel="payment" href="https://www.buzzsprout.com/1774404/support"&gt;Support the show&lt;/a&gt;&lt;/p&gt;&lt;p&gt;Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.&lt;/p&gt;&lt;p&gt;Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we&amp;apos;re building awareness and connection for everyone affected by Cornelia de Lange Syndrome.&lt;/p&gt;&lt;p&gt;(c) Canadian CdLS Foundation. All Rights Reserved.&lt;/p&gt;</description>

In this deeply personal episode of CdLS Connections, Ken Pfalzgraf shares the life and legacy of his daughter Tami, who passed away at age 18 in late 2024 due to complications related to a gastric duplicative cyst associated with Cornelia de Lange Syndrome (CdLS). Ken reflects on fatherhood, advocacy, music, partnership, and the emotional reality of navigating complex medical systems. Through Tammi’s story, this conversation explores both the joy of raising a child with CdLS and the painful r...

Ep. #13 - 💜  Family Series: Remembering Tami — A Father’s Story, GI Complications & Advocacy in CdLS

Navigating the challenges & triumphs of Cornelia de Lange Syndrome (CdLS) and where we explore, learn, and share everything related to CdLS. We will learn from families, clinicians, researchers & educators and those exploring new frontiers relevant to the CdLS community.

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