# rare disease (blogs) — RSS Amplifier Recent posts from the 5 feeds in the RSS Amplifier directory that cover rare disease. Page: Feed: --- ## [Milo’s Story](https://www.curegm1.org/milos-story/) _2026-08-20 · Christine Waggoner · Cure GM1_ Milo’s Story Milo passed away from infantile GM1 (Type 1) on July 20, 2026. Below,... The post Milo’s Story appeared first on Cure GM1 . ## [Ayesha’s Story](https://www.curegm1.org/ayeshas-story/) _2026-08-17 · Christine Waggoner · Cure GM1_ Ayesha’s Story Ayesha is the only child of a family who has already endured heartbreaking... The post Ayesha’s Story appeared first on Cure GM1 . ## [5 Things Worth The Money - The Patient Edition](https://taylorcoffman.substack.com/p/5-things-worth-the-money-the-patient) _2026-08-16 · Rare Disease Girl_ and I'll throw in some bonus ones too! ## [Ravi’s Story](https://www.curegm1.org/ravis-story/) _2026-08-14 · Christine Waggoner · Cure GM1_ Ravi’s Story Ravi passed away from infantile GM1 (Type 1) on March 4, 2026. Below,... The post Ravi’s Story appeared first on Cure GM1 . ## [3x3 Thursday - On Uncertainty Versus Possibility](https://taylorcoffman.substack.com/p/3x3-thursday-on-uncertainty) _2026-08-13 · Rare Disease Girl_ 3 minute read - A thought. A quote. A question. ## [From Hope to Reality: Celebrating Five Years of Riaan Research Initiative](https://riaanresearch.substack.com/p/from-hope-to-reality-celebrating) _2026-08-11 · Riaan Research Initiative · Riaan's Newsletter_ Read Our First-Ever Impact Report ## [Resilience Fatigue Is Real.](https://taylorcoffman.substack.com/p/resilience-fatigue-is-real) _2026-08-09 · Rare Disease Girl_ and 12 ways I cope with it. ## [3x3 Thursday - On Turning Points](https://taylorcoffman.substack.com/p/3-things-thursday-on-turning-points) _2026-08-06 · Rare Disease Girl_ 3 minute read - A thought. A quote. A question. ## [August 2026 Cure GM1 Catalyst](https://www.curegm1.org/august-2026-cure-gm1-catalyst/) _2026-08-03 · Christine Waggoner · Cure GM1_ Hello! We have some incredible news for the GM1 community. In July, members of the Cure GM1 team met with representatives of the U.S. Food & Drug Administration (FDA) to discuss the future of Enzyme Replacement Therapy (ERT) as a treatment for those living with GM1 gangliosidosis. The post August 2026 Cure GM1 Catalyst appeared first on Cure GM1 . ## [Hometown Drive – July 30, 2026](https://www.hometownstation.com/podcasts/hometown-drive-july-30-2026-604021) _2026-07-31 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ Hometown Drive –July 30, 2026 Live in studio, you’re watching Hometown Drive with Jade Aubuchon and Jen Sparks. Today, they talk about a few cold cases in the Santa Clarita area, E-Bikes and the latest social media trend causing property damage around town. Do you have a news tip? Call us at (661) 298-1220, ... The post Hometown Drive – July 30, 2026 appeared first on KHTS Radio . ## [Retro Grid Dungeon Crawler (Sponsored)](https://crawlproof.com/a/neu5povELhko) _2026-07-31 · **Sponsored**_ Retro grid movement with first-person combat, loot and skill-tree progression. ## [The Senior Hour– Providence Holy Cross Medical Center, Sondra Wollenman- July 29, 2026](https://www.hometownstation.com/podcasts/the-senior-hour-providence-holy-cross-medical-center-sondra-wollenman-july-29-2026-603795) _2026-07-30 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ The Senior Hour Hosts: Barbara Cochran and Kevin MacDonald GUEST: Sondra Wollenman On today’s show, your hosts Barbara Cochran and Kevin MacDonald talk with Sondra Wollenman, RN at Providence Holy Cross Medical Center. They talk about the services offered, specifically Palliative Care for those suffering from chronic illnesses. They help guide the patient through medical ... The post The Senior… ## [Politics And The Pulpit- Herb Morgan- July 29, 2026](https://www.hometownstation.com/podcasts/politics-and-the-pulpit-herb-morgan-july-29-2026-603786) _2026-07-30 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ Politics And The Pulpit –July 29, 2026 Host: Pastor Jerry Cook Guest: Herb Morgan On today’s show, your host Pastor Jerry Cook talks with Herb Morgan, State Controller. Previous Episode: Politics And The Pulpit- Jennifer Oliver O’Connell- July 22, 2026 Do you have a news tip? Call us at (661) 298-1220, or send ... The post Politics And The Pulpit- Herb Morgan- July 29, 2026 appeared first on KHTS… ## [The Rare Hour- Taylor Kelstrom- July 28, 2026](https://www.hometownstation.com/podcasts/the-rare-hour-taylor-kelstrom-july-28-2026-603715) _2026-07-28 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ SHOW: The Rare Hour HOST: Christopher Velona GUEST: Taylor Kelstrom On today’s show, host Christopher Velona welcomes Taylor Kelstrom. Taylor is a local real estate agent with the Remax Gateway group and Kelstrom Group. Together, they talk about Taylor’s personal and professional life as well as his company’s involvement in the Rare Stairs event taking ... The post The Rare Hour- Taylor Kelstrom-… ## [GM1 Gangliosidosis vs. GM2 Gangliosidosis (Tay-Sachs / Sandhoff): Understanding the Differences](https://www.curegm1.org/gm1-gangliosidosis-vs-gm2-gangliosidosis-tay-sachs-sandhoff-understanding-the-differences/) _2026-07-26 · Christine Waggoner · Cure GM1_ From First Clinical Descriptions to Modern Therapeutics, a plain-language guide for families and caregivers Why... The post GM1 Gangliosidosis vs. GM2 Gangliosidosis (Tay-Sachs / Sandhoff): Understanding the Differences appeared first on Cure GM1 . ## [How to Help Fund Research and Support the Cure GM1 Foundation](https://www.curegm1.org/how-to-help-fund-research-and-support-the-cure-gm1-foundation/) _2026-07-26 · Christine Waggoner · Cure GM1_ GM1 gangliosidosis is a rare, inherited disease that robs children of their abilities, and their... The post How to Help Fund Research and Support the Cure GM1 Foundation appeared first on Cure GM1 . ## [The Real Estate Fix – Jane Szerman, Attorney- July 24, 2026](https://www.hometownstation.com/podcasts/the-real-estate-fix-jane-szerman-attorney-july-24-2026-603677) _2026-07-24 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ The Real Estate Fix With Rich Szerman HOST: Rich Szerman On today’s show, your host Rich welcomes Real Estate Attorney and his wife, Jane Szerman. Together they answer questions about real estate and more. Call Rich at 661-714-1400. Previous Episode: The Real Estate Fix – Real Estate Scams with Marcela Slavik- July 10, ... The post The Real Estate Fix – Jane Szerman, Attorney- July 24, 2026… ## [Crickets on the aHUS Name Change Front... until now](https://taylorcoffman.substack.com/p/crickets-on-the-ahus-name-change) _2026-07-24 · Rare Disease Girl_ Patients & caregivers get an opportunity to share their voice ## [Hometown Drive- July 23, 2026](https://www.hometownstation.com/podcasts/hometown-drive-july-23-2026-603854) _2026-07-24 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ Hometown Drive –July 23, 2026 Live in studio it’s Jade Aubuchon and Jen Sparks on Hometown Drive. Do you have a news tip? Call us at (661) 298-1220, or send an email to news@hometownstation.com. Don’t miss a thing. Get breaking KHTS Santa Clarita News Alerts delivered right to your inbox. Report a typo or error, email Corrections@hometownstation.com KHTS ... The post Hometown Drive- July 23, 2026… ## [Cure GM1 Held an INTERACT Meeting About ERT with The FDA](https://www.curegm1.org/interact-meeting-ert-for-gm1/) _2026-07-23 · Christine Waggoner · Cure GM1_ Cure GM1 Moves ERT One Step Closer to A Trial We have some incredible news... The post Cure GM1 Held an INTERACT Meeting About ERT with The FDA appeared first on Cure GM1 . ## [Good Morning Santa Clarita- BodyShop661- July 22, 2026](https://www.hometownstation.com/podcasts/good-morning-santa-clarita-bodyshop661-july-22-2026-603836) _2026-07-23 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ Good Morning Santa Clarita –July 22, 2026 Live in studio, Delgado & Jen talk with Cesar Ranuschio Owner of BodyShop661 on Good Morning Santa Clarita! Do you have a news tip? Call us at (661) 298-1220, or send an email to news@hometownstation.com. Don’t miss a thing. Get breaking KHTS Santa Clarita News Alerts delivered right to your ... The post Good Morning Santa Clarita- BodyShop661- July 22,… ## [AI Summaries & Audio Briefings (Sponsored)](https://crawlproof.com/a/OgZgbu6d6M8M) _2026-07-23 · **Sponsored**_ Read AI summaries and listen to concise audio briefings for the latest stories. ## [Good Morning Santa Clarita- Dr. Aakash Ahuja- July 22, 2026](https://www.hometownstation.com/podcasts/good-morning-santa-clarita-dr-aakash-ahuja-july-22-2026-603827) _2026-07-23 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ Good Morning Santa Clarita –July 22, 2026 Live in studio, KHTS Co-Owner Carl Goldman talks with Dr. Aakash Ahuja – Hart District Board of Trustees Do you have a news tip? Call us at (661) 298-1220, or send an email to news@hometownstation.com. Don’t miss a thing. Get breaking KHTS Santa Clarita News Alerts delivered right to ... The post Good Morning Santa Clarita- Dr. Aakash Ahuja- July 22, 2026… ## [Politics And The Pulpit- Jennifer Oliver O’Connell- July 22, 2026](https://www.hometownstation.com/podcasts/politics-and-the-pulpit-jennifer-oliver-oconnell-july-22-2026-603696) _2026-07-22 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ Politics And The Pulpit –July 22, 2026 Host: Pastor Jerry Cook Guest: Jennifer Oliver O’Connell On today’s show, your host Pastor Jerry Cook talks with Jennifer Oliver O’Connell of RedState.com You can find Pastor Cook at Freedom’s Way Baptist Church in Castaic. Previous Episode: Politics And The Pulpit- Michael Gates, Attorney General Candidate- July ... The post Politics And The Pulpit- Jennifer… ## [The Senior Hour- Kevin MacDonald, Christopher Velona- July 22, 2026](https://www.hometownstation.com/podcasts/the-senior-hour-kevin-macdonald-christopher-velona-july-22-2026-604001) _2026-07-22 · Jennifer Sparks · Podcasts Archives — KHTS Radio_ The Senior Hour Hosts: Barbara Cochran and Kevin MacDonald GUEST: Christopher Velona On today’s show, your hosts Barbara Cochran and Kevin MacDonald talk about the Senior Center and it’s many offerings. There you can find group lessons, clubs, games, entertainment and meals. Go to scvseniorcenter.org Next, they talk with Christopher Velona, host of The Rare ... The post The Senior Hour- Kevin… ## [The Angel POV](https://taylorcoffman.substack.com/p/the-angel-pov) _2026-07-16 · Rare Disease Girl_ Surviving death, changes how I see life... ## [GM1 Gangliosidosis: A History](https://www.curegm1.org/history-of-gm1-gangliosidosis/) _2026-07-15 · Christine Waggoner · Cure GM1_ GM1 Gangliosidosis: A History From First Clinical Descriptions to Modern Therapeutics Last updated August 2026... The post GM1 Gangliosidosis: A History appeared first on Cure GM1 . ## [Going to The Pitt](https://taylorcoffman.substack.com/p/going-to-the-pitt) _2026-07-05 · Rare Disease Girl_ Life sure will take you on a journey if you let it. ## [July 2026 Cure GM1 Catalyst](https://www.curegm1.org/july-2026-cure-gm1-catalyst/) _2026-06-30 · Christine Waggoner · Cure GM1_ Summer has a way of slowing things down, and we hope you are finding joy in relaxed routines, longer days, and more time with your precious families. I’m pleased to introduce our coordinator for this year’s virtual International Cure GM1 Community Conference, Cleopatra Frazier. She’ll be here to answer all of your questions and help us create an impactful and meaningful experience for all of you… ## [When a Droplet Meets the Ocean](https://riaanresearch.substack.com/p/when-a-droplet-meets-the-ocean) _2026-06-30 · Riaan Research Initiative · Riaan's Newsletter_ Reflections on Rare Disease and the Afterlife ## [This Is a Love Story](https://riaanresearch.substack.com/p/this-is-a-love-story) _2026-06-17 · Riaan Research Initiative · Riaan's Newsletter_ Thank you for helping us make history. ## [Kid Adventures + Meeting The Cast of the Pitt & Jane Fonda](https://taylorcoffman.substack.com/p/kid-adventures-meeting-the-cast-of) _2026-06-16 · Rare Disease Girl_ and on being insanely busy but not missing the good stuff... ## [Your 24/7 AI Media Buyer (Sponsored)](https://crawlproof.com/a/azdC5rVIJpzH) _2026-06-16 · **Sponsored**_ Finds placement, geo, and funnel leaks and proposes fixes you approve ## [Riaan Receives First Gene Therapy for Cockayne Syndrome](https://riaanresearch.substack.com/p/riaan-becomes-first-patient-treated) _2026-06-13 · Riaan Research Initiative · Riaan's Newsletter_ A monumental advancement for the Cockayne syndrome patient community ## [Dear Insurance Industry, Don’t Pee On My Leg And Tell Me It’s Raining.](https://taylorcoffman.substack.com/p/dear-insurance-industry-dont-pee) _2026-06-07 · Rare Disease Girl_ Ending the "profits over people"debate once and for all ## [June 2026 Cure GM1 Catalyst](https://www.curegm1.org/june-2026-cure-gm1-catalyst/) _2026-06-01 · Christine Waggoner · Cure GM1_ Happy June! This is our favorite month because it means International GM1 Gangliosidosis Awareness Day 2026 is almost here. Our June 2026 Cure GM1 Catalyst newsletter covers GM1 Awareness Day results, community stories, the latest research, and ways to get involved. The post June 2026 Cure GM1 Catalyst appeared first on Cure GM1 . ## [The Patient Mental Health Guide](https://taylorcoffman.substack.com/p/the-patient-mental-health-guide) _2026-05-21 · Rare Disease Girl_ A digital atlas to help patients when life gets hard ## [Artemis II & An Ordinary Night](https://riaanresearch.substack.com/p/artemis-ii-and-an-ordinary-night) _2026-04-11 · Riaan Research Initiative · Riaan's Newsletter_ When a lunar mission collides with caregiving ## [Six Wonderful Years](https://riaanresearch.substack.com/p/six-wonderful-years) _2025-12-12 · Riaan Research Initiative · Riaan's Newsletter_ Happy 6th Birthday, Riaan! ## [Our Worlds Are Equally Important](https://riaanresearch.substack.com/p/our-worlds-are-equally-important) _2025-12-05 · Riaan Research Initiative · Riaan's Newsletter_ A rare mama's enlightening ride after Thanksgiving ## [The Myth of the Support System](https://riaanresearch.substack.com/p/the-myth-of-the-support-system) _2025-11-10 · Riaan Research Initiative · Riaan's Newsletter_ Many of us claim to have one. How many of us really do? ## [Bermuda, You Left Us Breathless](https://riaanresearch.substack.com/p/bermuda-you-left-us-breathless) _2025-09-11 · Riaan Research Initiative · Riaan's Newsletter_ Riaan Visits the Land of Pink Sands ## [The Bad Days](https://riaanresearch.substack.com/p/the-bad-days) _2025-08-27 · Riaan Research Initiative · Riaan's Newsletter_ We Are Never Ready ## [Why I Believe in Living a Rare Life](https://liveliferare.substack.com/p/why-i-believe-in-living-a-rare-life) _2025-02-28 · Stephen V. Smith · Live Life Rare_ Ten years ago, I did what few patients do — I walked upright, of my own volition, into the neuro intensive care unit of a Birmingham hospital. ## [What, A Decade?](https://liveliferare.substack.com/p/what-a-decade) _2024-12-16 · Stephen V. Smith · Live Life Rare_ My life completely changed 10 years ago - for better AND for worse