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Rare Diseases, Real Stories

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by UMass Chan Medical School

5.0(6 reviews)
7 episodes
Updated Daily
Accepts GuestsHas SponsorsLocation 🇺🇸
46

Podcast Authority

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FairBased on show quality, social media presence, reviews, charts, and more
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Quality80
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Engagement32
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Podcast Overview

Rare Diseases, Real Stories is a special podcast series that celebrates families who are transforming the world of rare diseases. In each episode, hear from parents about the challenges they face before and after their child is diagnosed, and the grief, strength, love and unwavering hope that guide them. Through their stories, you'll discover how their collaboration with UMass Chan Medical School researchers is driving innovation and fostering new rare disease treatments. Prepare to be moved, motivated and inspired by the real-life champions who are shaping the future of rare disease advocacy and research, one family at a time. Rare diseases, Real Stories is produced by the UMass Chan's Office of Communications. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories on our website at umassmed.edu/rarediseasesrealstories or wherever you get your podcasts. 🔗 Share the episodes using the following hashtags: #rarediseasesrealstories, #RareDisease, #podcast Interested in learning more about gene therapy research? Email us at: AdvancingTogether@umassmed.edu

Language

🇺🇲

Publishing Since

2/3/2025

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46

Podcast Authority

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Quality80
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Engagement32
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Recent Episodes

Episode thumbnail for Courageous Parents Network

February 10, 2025

Courageous Parents Network

<div class="OutlineElement Ltr SCXW12309040 BCX0"> <p class="Paragraph SCXW12309040 BCX0"><span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0">In the final episode of</span></span> <span class="TextRun SCXW12309040 BCX0" lang= "EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0">Rare Diseases, Real Stories</span></span><span class="TextRun SCXW12309040 BCX0" lang= "EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0">,</span> <span class= "NormalTextRun SCXW12309040 BCX0">two</span> <span class= "NormalTextRun SCXW12309040 BCX0">Massachusetts</span> <span class= "NormalTextRun SCXW12309040 BCX0">mothers</span> <span class= "NormalTextRun SCXW12309040 BCX0">who lost their children to</span> <span class="NormalTextRun SCXW12309040 BCX0">rare diseases</span> <span class="NormalTextRun SCXW12309040 BCX0">share how they turned their grief into</span> <span class= "NormalTextRun SCXW12309040 BCX0">purpose. Blyth Taylor Lord started the</span></span> <a class="Hyperlink SCXW12309040 BCX0" href="https://courageousparentsnetwork.org/" target="_blank" rel= "noreferrer noopener"><span class= "FieldRange SCXW12309040 BCX0"><span class= "TextRun Underlined SCXW12309040 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0" data-ccp-charstyle= "Hyperlink">Courageous Parents Network</span></span></span></a> <span class="TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0">13 years</span> <span class= "NormalTextRun SCXW12309040 BCX0">after her daughter, Cameron</span><span class= "NormalTextRun SCXW12309040 BCX0">,</span> <span class= "NormalTextRun SCXW12309040 BCX0">died from Tay-Sachs disease</span><span class= "NormalTextRun SCXW12309040 BCX0">.</span> <span class= "NormalTextRun SCXW12309040 BCX0">Jennifer Siedman</span> <span class="NormalTextRun SCXW12309040 BCX0">lost her son, Ben, to</span> <span class="NormalTextRun SCXW12309040 BCX0">Sanfilippo syndrome</span> <span class="NormalTextRun SCXW12309040 BCX0">just shy of</span> <span class= "NormalTextRun SCXW12309040 BCX0">his</span> <span class= "NormalTextRun SCXW12309040 BCX0">18</span><span class= "NormalTextRun SCXW12309040 BCX0">th</span> <span class= "NormalTextRun SCXW12309040 BCX0">birthday</span><span class= "NormalTextRun SCXW12309040 BCX0">. Together, Lord and Seidman</span> <span class= "NormalTextRun SCXW12309040 BCX0">launched</span> <span class= "NormalTextRun SCXW12309040 BCX0">the</span> <span class= "NormalTextRun SCXW12309040 BCX0">network</span> <span class= "NormalTextRun SCXW12309040 BCX0">to</span> <span class= "NormalTextRun SCXW12309040 BCX0">empower</span> <span class= "NormalTextRun SCXW12309040 BCX0">and support</span> <span class= "NormalTextRun SCXW12309040 BCX0">parents</span> <span class= "NormalTextRun SCXW12309040 BCX0">whose</span> <span class= "NormalTextRun SCXW12309040 BCX0">children</span> <span class= "NormalTextRun SCXW12309040 BCX0">are diagnosed</span> <span class= "NormalTextRun SCXW12309040 BCX0">with rare diseases</span> <span class="NormalTextRun SCXW12309040 BCX0">and</span> <span class="NormalTextRun SCXW12309040 BCX0">other serious</span> <span class= "NormalTextRun SCXW12309040 BCX0">illnesses</span><span class= "NormalTextRun SCXW12309040 BCX0">.</span><span class= "NormalTextRun SCXW12309040 BCX0"> </span></span><span class= "EOP SCXW12309040 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW12309040 BCX0"> <p class="Paragraph SCXW12309040 BCX0"><span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0">🎧</span></span> <span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0">L</span><span class= "NormalTextRun SCXW12309040 BCX0">isten and subscribe to all episodes of</span></span> <span class="TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0">Rare Diseases, Real Stories: </span></span><a class="Hyperlink SCXW12309040 BCX0" href="https://umassmed.edu/rarediseasesrealstories" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW12309040 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0" data-ccp-charstyle= "Hyperlink">umassmed.edu/rarediseasesrealstories</span></span></a>  </p> </div> <div class="OutlineElement Ltr SCXW12309040 BCX0"> <p class="Paragraph SCXW12309040 BCX0"><span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW12309040 BCX0">💜</span></span> <span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW12309040 BCX0">Learn</span> <span class= "NormalTextRun SCXW12309040 BCX0">more</span> <span class= "NormalTextRun SCXW12309040 BCX0">about the Courageous Parents Network</span><span class= "NormalTextRun SCXW12309040 BCX0">:</span></span><span class= "EOP SCXW12309040 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW12309040 BCX0"> <p class="Paragraph SCXW12309040 BCX0"><a class= "Hyperlink SCXW12309040 BCX0" href= "https://courageousparentsnetwork.org/" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW12309040 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0" data-ccp-charstyle= "Hyperlink">Courageous Parents Network</span></span></a><span class="EOP SCXW12309040 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW12309040 BCX0"> <p class="Paragraph SCXW12309040 BCX0"><a class= "Hyperlink SCXW12309040 BCX0" href= "https://neurojourney.courageousparentsnetwork.org/" target= "_blank" rel="noreferrer noopener"><span class= "FieldRange SCXW12309040 BCX0"><span class= "TextRun Underlined SCXW12309040 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW12309040 BCX0" data-ccp-charstyle= "Hyperlink">NeuroJou</span><span class= "NormalTextRun SCXW12309040 BCX0" data-ccp-charstyle= "Hyperlink">rney</span></span></span></a><span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW12309040 BCX0"> </span></span><span class= "EOP SCXW12309040 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW12309040 BCX0"> <p class="Paragraph SCXW12309040 BCX0"><span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW12309040 BCX0">🔗</span></span> <span class= "TextRun SCXW12309040 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW12309040 BCX0">Share</span> <span class= "NormalTextRun SCXW12309040 BCX0">the Courageous Parents Network episode</span> <span class="NormalTextRun SCXW12309040 BCX0">using the following hashtags: #RareDiseasesRealStories, #RareDiseases, #podcast</span></span><span class="EOP SCXW12309040 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW125305488 BCX0"> <p class="Paragraph SCXW125305488 BCX0"><span class= "TextRun SCXW125305488 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW125305488 BCX0">Interested in learning more about gene therapy research</span><span class= "NormalTextRun SCXW125305488 BCX0">?</span> <span class= "NormalTextRun SCXW125305488 BCX0">E</span><span class= "NormalTextRun SCXW125305488 BCX0">mail us at:</span></span> <a class="Hyperlink SCXW125305488 BCX0" href= "mailto:AdvancingTogether@umassmed.edu" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW125305488 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW125305488 BCX0" data-ccp-charstyle= "Hyperlink">AdvancingTogether@umassmed.edu</span></span></a><span class="TextRun SCXW125305488 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW125305488 BCX0"> </span></span><span class= "EOP SCXW125305488 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW125305488 BCX0"> <p class="Paragraph SCXW125305488 BCX0"><span class= "EOP SCXW125305488 BCX0" data-ccp-props="{}"> </span></p> </div> <p> </p>

Episode thumbnail for Jack's story: Hereditary spastic paraplegia type 4

February 10, 2025

Jack's story: Hereditary spastic paraplegia type 4

<p><span class="TextRun SCXW205058544 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW205058544 BCX0">Seven-year-old Jack Laidlaw</span><span class= "NormalTextRun SCXW205058544 BCX0">,</span> <span class= "NormalTextRun SCXW205058544 BCX0">the oldest of three boys</span><span class="NormalTextRun SCXW205058544 BCX0">,</span> <span class="NormalTextRun SCXW205058544 BCX0">is</span> <span class="NormalTextRun SCXW205058544 BCX0">upbeat and</span> <span class="NormalTextRun SCXW205058544 BCX0">friendly to everyone he meets,</span> <span class= "NormalTextRun SCXW205058544 BCX0">according to his parents,</span> <span class="NormalTextRun SCXW205058544 BCX0">Anna</span> <span class="NormalTextRun SCXW205058544 BCX0">and Richard</span> <span class= "NormalTextRun SCXW205058544 BCX0">Laidlaw</span><span class= "NormalTextRun SCXW205058544 BCX0">.</span> <span class= "NormalTextRun SCXW205058544 BCX0">But</span> <span class= "NormalTextRun SCXW205058544 BCX0">J</span><span class= "NormalTextRun SCXW205058544 BCX0">ack faces</span> <span class= "NormalTextRun SCXW205058544 BCX0">challenges</span> <span class= "NormalTextRun SCXW205058544 BCX0">due to</span> <span class= "NormalTextRun SCXW205058544 BCX0">a rare disorder</span> <span class="NormalTextRun SCXW205058544 BCX0">he cannot yet</span> <span class= "NormalTextRun SCXW205058544 BCX0">comprehend</span><span class= "NormalTextRun SCXW205058544 BCX0">.</span> <span class= "NormalTextRun SCXW205058544 BCX0">H</span><span class= "NormalTextRun SCXW205058544 BCX0">is parents are determin</span><span class= "NormalTextRun SCXW205058544 BCX0">ed</span> <span class= "NormalTextRun SCXW205058544 BCX0">to</span> <span class= "NormalTextRun SCXW205058544 BCX0">remain</span> <span class= "NormalTextRun SCXW205058544 BCX0">hopeful and create a better future for him</span> <span class= "NormalTextRun SCXW205058544 BCX0">despite</span> <span class= "NormalTextRun SCXW205058544 BCX0">his diagnosis</span> <span class="NormalTextRun SCXW205058544 BCX0">of hereditary spastic paraplegia type 4 (SPG4). </span></span><span class= "EOP SCXW205058544 BCX0" data-ccp-props="{}"> </span></p> <div class="OutlineElement Ltr SCXW185616588 BCX0"> <p class="Paragraph SCXW185616588 BCX0"><span class= "EOP SCXW185616588 BCX0" data-ccp-props="{}"><span class= "TextRun SCXW26404757 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW26404757 BCX0">🎧</span></span> <span class= "TextRun SCXW26404757 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW26404757 BCX0">L</span><span class= "NormalTextRun SCXW26404757 BCX0">isten and subscribe to all episodes of</span></span> <span class="TextRun SCXW26404757 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW26404757 BCX0">Rare Diseases, Real Storie:</span></span> <a class="Hyperlink SCXW26404757 BCX0" href="https://umassmed.edu/rarediseasesrealstories" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW26404757 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW26404757 BCX0" data-ccp-charstyle= "Hyperlink">umassmed.edu/</span><span class= "NormalTextRun SCXW26404757 BCX0" data-ccp-charstyle= "Hyperlink">rarediseasesrealstories</span></span></a></span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0"><span class= "TextRun SCXW128340604 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW128340604 BCX0">💜</span></span> L</span><span class="NormalTextRun SCXW57878448 BCX0">earn more about</span> <span class="NormalTextRun SCXW57878448 BCX0">the Laidlaw</span> <span class= "NormalTextRun SCXW57878448 BCX0">family</span> <span class= "NormalTextRun SCXW57878448 BCX0">and their efforts to support</span> <span class= "NormalTextRun SCXW57878448 BCX0">SPG4</span> <span class= "NormalTextRun SCXW57878448 BCX0">research. </span></span><span class="EOP SCXW57878448 BCX0" data-ccp-props= "{"335559738":240,"335559739":240}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href= "https://blugenes.org/spg4-cure/" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">BluGenes</span></span></a><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0">   </span></span><span class="EOP SCXW57878448 BCX0" data-ccp-props= "{"335559738":240,"335559739":240}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href= "https://give.rarevillage.org/campaign/spg4-research-and-treatment-for-jack/c577364" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">SPG4 research and treatment for Jack</span></span></a><span class="EOP SCXW57878448 BCX0" data-ccp-props= "{"335559738":240,"335559739":240}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href= "https://www.gofundme.com/f/donate-to-research-for-the-spg4-cure-for-jack" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">Additional</span> <span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">information about Jack</span></span></a><span class= "EOP SCXW57878448 BCX0" data-ccp-props= "{"335559738":240,"335559739":240}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0"><span class= "TextRun SCXW128340604 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW128340604 BCX0">💜</span></span> To learn more about</span> <span class= "NormalTextRun SCXW57878448 BCX0">h</span><span class= "NormalTextRun SCXW57878448 BCX0">ereditary</span> <span class= "NormalTextRun SCXW57878448 BCX0">s</span><span class= "NormalTextRun SCXW57878448 BCX0">pastic</span> <span class= "NormalTextRun SCXW57878448 BCX0">p</span><span class= "NormalTextRun SCXW57878448 BCX0">araplegia</span><span class= "NormalTextRun SCXW57878448 BCX0">, patient</span> <span class= "NormalTextRun SCXW57878448 BCX0">advocacy</span> <span class= "NormalTextRun SCXW57878448 BCX0">and research,</span> <span class= "NormalTextRun SCXW57878448 BCX0">visit</span> <span class= "NormalTextRun SCXW57878448 BCX0">the following resources:  </span></span><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW57878448 BCX0"> </span></span><span class= "EOP SCXW57878448 BCX0" data-ccp-props= "{"335559738":240,"335559739":240}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href= "https://www.umassmed.edu/GrayEdwardsLab/research/spastic-paraplegia-type-4-spg4/" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">UMass Chan Medical School</span></span></a><span class= "EOP SCXW57878448 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href= "https://www.childrenshospital.org/conditions/hereditary-spastic-paraplegia" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">Boston Children’s Hospital, Spastic Paraplegia – Centers of Excellence Research Network</span></span></a><span class="EOP SCXW57878448 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href="https://www.curespg4.org/" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">Cure SPG4 Foundation</span></span></a><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0"> </span></span><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW57878448 BCX0"> </span></span><span class= "EOP SCXW57878448 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href="https://sp-foundation.org/" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">Spastic Paraplegia Foundation, Inc.</span></span></a><span class="EOP SCXW57878448 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href= "https://www.facebook.com/mauryakodurifoundation/" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">Mauray</span> <span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">Koduri Foundation</span></span></a><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0"> </span></span><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW57878448 BCX0"> </span></span><span class= "EOP SCXW57878448 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><a class= "Hyperlink SCXW57878448 BCX0" href= "https://www.lillyandblair.org/about" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW57878448 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0" data-ccp-charstyle= "Hyperlink">The Lilly Blair Foundation</span></span></a><span class="EOP SCXW57878448 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW57878448 BCX0"> <p class="Paragraph SCXW57878448 BCX0"><span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0"> </span></span> <span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0">🔗</span></span> <span class= "TextRun SCXW57878448 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW57878448 BCX0">Share</span> <span class= "NormalTextRun SCXW57878448 BCX0">Jack</span><span class= "NormalTextRun SCXW57878448 BCX0">’s story</span> <span class= "NormalTextRun SCXW57878448 BCX0">using the</span> <span class= "NormalTextRun SCXW57878448 BCX0">following hashtags: #RareDiseasesRealStories, #RareDisease</span><span class= "NormalTextRun SCXW57878448 BCX0">s</span><span class= "NormalTextRun SCXW57878448 BCX0">, #</span><span class= "NormalTextRun SCXW57878448 BCX0">podcast</span></span><span class= "EOP SCXW57878448 BCX0" data-ccp-props="{}"> </span></p> <div class="OutlineElement Ltr SCXW125305488 BCX0"> <p class="Paragraph SCXW125305488 BCX0"><span class= "TextRun SCXW125305488 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW125305488 BCX0">Interested in learning more about gene therapy research</span><span class= "NormalTextRun SCXW125305488 BCX0">?</span> <span class= "NormalTextRun SCXW125305488 BCX0">E</span><span class= "NormalTextRun SCXW125305488 BCX0">mail us at:</span></span> <a class="Hyperlink SCXW125305488 BCX0" href= "mailto:AdvancingTogether@umassmed.edu" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW125305488 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW125305488 BCX0" data-ccp-charstyle= "Hyperlink">AdvancingTogether@umassmed.edu</span></span></a><span class="TextRun SCXW125305488 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW125305488 BCX0"> </span></span><span class= "EOP SCXW125305488 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW125305488 BCX0"> <p class="Paragraph SCXW125305488 BCX0"><span class= "EOP SCXW125305488 BCX0" data-ccp-props="{}"> </span></p> </div> </div>

Episode thumbnail for Raiden's story: UBA5

February 10, 2025

Raiden's story: UBA5

<p><span class="TextRun SCXW226457955 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW226457955 BCX0">Tommy and Linda Pham </span><span class= "NormalTextRun SCXW226457955 BCX0">turned their heartbreak over their son Raiden’s</span> <span class= "NormalTextRun SCXW226457955 BCX0">ultra-</span><span class= "NormalTextRun SCXW226457955 BCX0">rare disease</span> <span class= "NormalTextRun SCXW226457955 BCX0">diagnosis</span><span class= "NormalTextRun SCXW226457955 BCX0">,</span> <span class= "NormalTextRun SCXW226457955 BCX0">UBA5 disorder</span><span class= "NormalTextRun SCXW226457955 BCX0">,</span> <span class= "NormalTextRun SCXW226457955 BCX0">into hope for</span> <span class="NormalTextRun SCXW226457955 BCX0">others.</span> <span class="NormalTextRun SCXW226457955 BCX0">There are</span> <span class="NormalTextRun SCXW226457955 BCX0">only</span> <span class="NormalTextRun SCXW226457955 BCX0">30 known cases in the world</span><span class= "NormalTextRun SCXW226457955 BCX0">,</span> <span class= "NormalTextRun SCXW226457955 BCX0">but</span> <span class= "NormalTextRun SCXW226457955 BCX0">the</span> <span class= "NormalTextRun SpellingErrorV2Themed SCXW226457955 BCX0">Pham</span><span class="NormalTextRun SpellingErrorV2Themed SCXW226457955 BCX0">s</span><span class="NormalTextRun SCXW226457955 BCX0">’</span> <span class="NormalTextRun SCXW226457955 BCX0">relentless determination and</span> <span class= "NormalTextRun SCXW226457955 BCX0">their</span> <span class= "NormalTextRun SCXW226457955 BCX0">partnership with UMass Chan</span> <span class="NormalTextRun SCXW226457955 BCX0">Medical School</span> <span class="NormalTextRun SCXW226457955 BCX0">could pave the</span> <span class="NormalTextRun SCXW226457955 BCX0">way for gene therapy advancements. </span></span><span class= "EOP SCXW226457955 BCX0" data-ccp-props="{}"> </span></p> <p><span class="EOP SCXW226457955 BCX0" data-ccp-props= "{}"><span class="TextRun SCXW65787879 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW65787879 BCX0"><span class= "TextRun SCXW69343013 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW69343013 BCX0">🎧</span></span> Listen and subscribe to all episodes of</span></span> <span class= "TextRun SCXW65787879 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW65787879 BCX0">Rare Diseases, Real Stories:</span></span><span class="TextRun SCXW65787879 BCX0" lang= "EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW65787879 BCX0"> </span></span><a class= "Hyperlink SCXW65787879 BCX0" href= "https://umassmed.edu/rarediseasesrealstories" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW65787879 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW65787879 BCX0" data-ccp-charstyle= "Hyperlink">umassmed.edu/</span><span class= "NormalTextRun SCXW65787879 BCX0" data-ccp-charstyle= "Hyperlink">rarediseasesrealstories</span></span></a> </span></p> <div class="OutlineElement Ltr SCXW140745062 BCX0"> <p class="Paragraph SCXW140745062 BCX0"><span class= "TextRun SCXW140745062 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0">💜 To learn more about the Raiden Science Foundation</span><span class= "NormalTextRun SCXW140745062 BCX0">,</span> <span class= "NormalTextRun SCXW140745062 BCX0">v</span><span class= "NormalTextRun SCXW140745062 BCX0">isit</span> <span class= "NormalTextRun SCXW140745062 BCX0">the foundation’s website at: </span></span> <a class="Hyperlink SCXW140745062 BCX0" href= "https://www.raidenscience.org/" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW140745062 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0" data-ccp-charstyle= "Hyperlink">https://www.raidenscience.org/.</span></span></a> <span class="TextRun SCXW140745062 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0">Follow Raiden’s journey on Instagram:</span></span> <a class="Hyperlink SCXW140745062 BCX0" href="https://www.instagram.com/raiden_journey/reels/?__d=1%2F" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW140745062 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0" data-ccp-charstyle= "Hyperlink">@raiden_journey.</span></span></a><span class= "TextRun SCXW140745062 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0"> </span></span><span class= "EOP SCXW140745062 BCX0" data-ccp-props= "{"335559738":240,"335559739":240}"> </span></p> </div> <div class="OutlineElement Ltr SCXW140745062 BCX0"> <p class="Paragraph SCXW140745062 BCX0"><span class= "TextRun SCXW140745062 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0">💜</span></span> <span class= "TextRun SCXW140745062 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0">UBA5 disorder</span> <span class="NormalTextRun SCXW140745062 BCX0">resources and support</span></span><span class="EOP SCXW140745062 BCX0" data-ccp-props= "{"335559738":240,"335559739":240}"> </span></p> </div> <div class="OutlineElement Ltr SCXW140745062 BCX0"> <p class="Paragraph SCXW140745062 BCX0"><a class= "Hyperlink SCXW140745062 BCX0" href= "https://www.raidenscience.org/" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW140745062 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0" data-ccp-charstyle= "Hyperlink">Raiden Science Foundation</span></span></a><span class= "EOP SCXW140745062 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW140745062 BCX0"> <p class="Paragraph SCXW140745062 BCX0"><a class= "Hyperlink SCXW140745062 BCX0" href= "https://www.umassmed.edu/translational-institute-for-molecular-therapeutics/about-us2/UBA5/" target="_blank" rel="noreferrer noopener"><span class= "TextRun Underlined SCXW140745062 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0" data-ccp-charstyle= "Hyperlink">Translational Institute for Molecular Therapeutics at UMass Chan Medical School  </span></span></a><span class= "EOP SCXW140745062 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW140745062 BCX0"> <p class="Paragraph SCXW140745062 BCX0"><span class= "TextRun SCXW140745062 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0">🔗</span></span> <span class= "TextRun SCXW140745062 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="none"><span class= "NormalTextRun SCXW140745062 BCX0">Share Raiden’s story using the following hashtags: #RareDiseasesRealStories, #RareDisease</span><span class= "NormalTextRun SCXW140745062 BCX0">s</span><span class= "NormalTextRun SCXW140745062 BCX0">, #</span><span class= "NormalTextRun SCXW140745062 BCX0">podcast</span><span class= "NormalTextRun SCXW140745062 BCX0"> </span></span><span class= "EOP SCXW140745062 BCX0" data-ccp-props="{}"> </span></p> <div class="OutlineElement Ltr SCXW125305488 BCX0"> <p class="Paragraph SCXW125305488 BCX0"><span class= "TextRun SCXW125305488 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW125305488 BCX0">Interested in learning more about gene therapy research</span><span class= "NormalTextRun SCXW125305488 BCX0">?</span> <span class= "NormalTextRun SCXW125305488 BCX0">E</span><span class= "NormalTextRun SCXW125305488 BCX0">mail us at:</span></span> <a class="Hyperlink SCXW125305488 BCX0" href= "mailto:AdvancingTogether@umassmed.edu" target="_blank" rel= "noreferrer noopener"><span class= "TextRun Underlined SCXW125305488 BCX0" lang="EN-US" xml:lang= "EN-US" data-contrast="none"><span class= "NormalTextRun SCXW125305488 BCX0" data-ccp-charstyle= "Hyperlink">AdvancingTogether@umassmed.edu</span></span></a><span class="TextRun SCXW125305488 BCX0" lang="EN-US" xml:lang="EN-US" data-contrast="auto"><span class= "NormalTextRun SCXW125305488 BCX0"> </span></span><span class= "EOP SCXW125305488 BCX0" data-ccp-props="{}"> </span></p> </div> <div class="OutlineElement Ltr SCXW125305488 BCX0"> <p class="Paragraph SCXW125305488 BCX0"><span class= "EOP SCXW125305488 BCX0" data-ccp-props="{}"> </span></p> </div> </div>

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What is Rare Diseases, Real Stories?

Rare Diseases, Real Stories is a special podcast series that celebrates families who are transforming the world of rare diseases. In each episode, hear from parents about the challenges they face before and after their child is diagnosed, and the grief, strength, love and unwavering hope that guide them. Through their stories, you'll discover how their collaboration with UMass Chan Medical School researchers is driving innovation and fostering new rare disease treatments. Prepare to be moved, motivated and inspired by the real-life champions who are shaping the future of rare disease advocacy and research, one family at a time.

Rare diseases, Real Stories is produced by the UMass Chan's Office of Communications.

🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories on our website at umassmed.edu/rarediseasesrealstories or wherever you get your podcasts.

🔗 Share the episodes using the following hashtags: #rarediseasesrealstories, #RareDisease, #podcast

Interested in learning more about gene therapy research? Email us at: AdvancingTogether@umassmed.edu

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This podcast updates daily.

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