Season 6, Episode 4: In Conversation with Rose Dallimore 

I am honored to welcome Rose Dallimore, a restorative practitioner, writer, artist, and activist living with complex chronic illnesses, including rare spinal conditions and hypermobile Ehlers-Danlos syndrome.

In this episode, Rose shares her journey through chronic pain, complex diagnoses, and two major spinal surgeries that changed her mobility and quality of life. We talk about navigating healthcare as a woman, the ways chronic pain is often dismissed, and what it means to advocate for yourself when the answers aren't always clear.

Rose also opens up about her work in advocacy, art, and mutual aid, including the Our Body Justice Project, and why sharing our stories can become a powerful form of survival, connection, and change.

Rose's story is a powerful reminder that we don't have to suffer alone, and that finding your voice can create space for others to be heard.

Listen wherever you get your podcasts!

Resources discussed in this episode:

Tethered Cord Syndrome — https://www.uclahealth.org/medical-services/neurosurgery/conditions-treated/adult-tethered-cord

Atlantoaxial Instability — https://www.ncbi.nlm.nih.gov/books/NBK519563/Ehlers-Danlos Syndromes: Neurological & Spinal Manifestations — https://www.ehlers-danlos.com/2017-eds-classification-non-experts/neurological-spinal-manifestations-ehlers-danlos-syndromes/

Complex Regional Pain Syndrome (CRPS) — https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

Hypermobile Ehlers-Danlos Syndrome (hEDS) — https://www.ehlers-danlos.com/heds/

Endometriosis — https://www.endofound.org

Adenomyosis — https://my.clevelandclinic.org/health/diseases/14167-adenomyosis

Pudendal Neuralgia — https://www.nhs.uk/conditions/pudendal-neuralgia/

#1of20Podcast #RareDiseaseAwareness #RareDisease #RareDiseaseAdvocacy #WomensHealth #ChronicIllness #EhlersDanlosSyndrome #DisabilityAdvocacy

Season 6, Episode 3: In Conversation with Joyce Sireno 🧬💜

I am honored to welcome Joyce Sireno, a longtime Huntington’s disease advocate whose family has been deeply impacted by the disease across generations.

Joyce is at risk of having inherited Huntington’s disease. She has a 50/50 chance of having inherited the gene from her father, and if she has the gene, she will develop the disease.

Huntington’s disease can cause motor and physical symptoms, cognitive decline, and behavioral changes. It has been described as having Alzheimer’s, Parkinson’s, and dementia all at once. But for Joyce, what makes it even more devastating is the uncertainty — never knowing which symptoms will appear, when they will begin, or how quickly the disease will progress. There is currently no cure.

Joyce has chosen not to undergo genetic testing, knowing that the result would not change the course of the disease. She has lost her father, two sisters, and one brother, along with many friends, to Huntington’s disease.

We talk about turning grief into advocacy, finding hope in the future of Huntington’s research, and why caring for the families living with HD today matters just as much as finding a treatment for tomorrow.

A deeply personal conversation about family, uncertainty, advocacy, and choosing hope.

Listen wherever you get your podcasts!

Season 6, Episode 2: In Conversation with Bridget Downing 🦓✨

I am honored to welcome Bridget Downing  a Charleston, South Carolina teacher living with Friedreich’s ataxia, a rare neuromuscular disease that has reshaped—but never defined—her life. In this inspiring podcast, Bridget shares her personal journey from diagnosis to progression, how she navigates daily life using a Segway, and the resilience it takes to keep moving forward. She also explores the remarkable growth of the Friedreich’s Ataxia Research Alliance and reflects on her own recent step into advocacy—proving that it’s never too late to use your voice and make an impact. Honest, empowering, and deeply human, Bridget’s story is one of strength, adaptation, and hope.

In this episode, we discuss:

✨ Bridget's diagnostic odyssey and ultra-rare Friedreich's ataxia diagnosis

✨ The determination of parents navigating rare disease before the internet

✨ Living with disability, independence, and accessibility

✨ Building community through rare disease advocacy

✨ The importance of Rare Disease Week and legislative advocacy

✨ Finding purpose through resilience, education, and sharing your story

#1of20Podcast #RareDiseaseAwareness #RareDisease #FriedreichsAtaxia #RareDiseaseAdvocacy #AccessibilityMatters

Season 6, Episode 1: In Conversation with Joyce Fitz

I am excited to welcome Joyce Fitz to the podcast! 🗣️🦓✨

About Joyce: Joyce is a 17 year old rare disease advocate from Linden NJ living with Shwachman Diamond Syndrome, a rare form of bone marrow failure. She is a current senior at the academy for allied health and sciences with a hopeful major in public policy in college. She has been a congressional advocate for 4 years, with her most recent achievement being introducing a resolution in NJ state congress to have an awareness day for her condition. Outside of advocacy she can be found performing as a vocalist across various popular cabaret venues in NYC or horseback riding at Legacy Riding Stables. She is very excited to be speaking on this podcast!

What is Shwachman-Diamond Syndrome (SDS)?: Shwachman Diamond Syndrome is an ultra rare genetic disease affecting 1 in every 80,000 people. It causes bone marrow failure, in my case making my body unable to produce enough neutrophils and red blood cells. It also causes exocrine pancreatic insufficiency, where the pancreas does not have enough digestive enzymes to digest fat. There is a high risk for leukemia with 30% of patients developing it by adulthood and also causes a shortened median life expectancy of 35.

Episode Highlights: 

• Growing up with an ultra-rare disease
• Receiving a diagnosis after an extended diagnostic journey
• The role of genetic testing in finding answers
• Turning personal challenges into advocacy opportunities
• Advancing rare disease legislation in New Jersey
• Why youth voices matter in healthcare policy
• Living beyond a diagnosis and pursuing passions
• Balancing advocacy, education, horseback riding, and music
• Advice for young rare disease advocates

Resources Joyce Shared:

• Shwachman-Diamond Syndrome Foundation
• National Organization for Rare Disorders (NORD)
• Global Genes
• Rare Disease Legislative Advocates (RDLA)
• Genetic Alliance
• Cleveland Clinic: Shwachman-Diamond Syndrome Overview

#ShwachmanDiamondSyndrome #SDSAwareness #RareDiseaseCommunity #PatientAdvocacy #RareDiseaseAwareness #YouthAdvocacy #GeneticTesting #HealthcarePolicy #HopeForRare #RareButNotAlone

Season 5, Episode 18: In Conversation with Munira Shamim

I am excited to welcome Munira Shamim to the podcast! 🗣️🦓✨

→ About Munira:
Munira Shamim is the co-founder of Growing Stronger, a nonprofit organization dedicated to advancing research and improving care for individuals with achondroplasia, the most common form of dwarfism. A passionate advocate and mother of three, Munira’s journey into rare disease advocacy began when her son, Ahmin, was diagnosed as a baby with achondroplasia.

Since that diagnosis, Munira has become a vocal champion for involving families in the research process, building community-centered resources, and advocating for science that reflects the lived realities of people with rare conditions. From managing her son’s surgeries to enrolling him in one of the first clinical trials for children with achondroplasia, she brings a grounded and deeply personal perspective to every conversation.

In 2020, Munira and her husband launched Growing Stronger to create the kind of resource they wished had existed when Ahmin was first diagnosed. Through research, advocacy, and education, the organization aims to empower families and improve outcomes for those with achondroplasia. Growing Stronger has supported initiatives ranging from clinical trial awareness to day-to-day living tips for families navigating the complex care needs associated with the condition.

→ What is Achondroplasia?
Achondroplasia is a rare genetic bone condition caused by a mutation in the FGFR3 gene. It affects the way bones grow and develop—particularly in the limbs and spine—and can lead to significant health implications, including spinal compression, sleep apnea, short stature, and hearing issues, all of which can have a lasting impact.

→ Resources Munira Shared:
https://growingstronger.org
https://rarediseases.info.nih.gov/diseases/8173/achondroplasia
https://www.chop.edu/conditions-diseases/achondroplasia

#AchondroplasiaAwareness #RareDiseaseCommunity #DwarfismAdvocacy #GrowingStrongerTogether #GeneticResearch #RareDiseaseAwareness #PatientAdvocacy #StrongerTogether #HopeForRare #RareButNotAlone

⁠Season 5, Episode 17: In Conversation with Beatriz “Bia” Kaori Miyakoshi Lopes⁠

→ About Bia:

Bia Kaori is the first patient advocate for FDMAS in Latin America. Her journey in social media began recently, but it has already been a wild and impactful ride. Living with not one but two rare diseases, and with a master’s research background focused on accessibility and infrastructure, Bia is dedicated to sharing knowledge and striving to make the world a little better.

As the first patient advocate for FDMAS in and from Latin America, Bia recognizes the significant lack of answers, cures, information, and patient voices in the region. While FDMAS remains globally under-researched, the scarcity of resources in Latin America is even greater. At 28 years old, Bia was deeply moved upon finally meeting others with the same condition—an experience that required traveling to the United States.

An interview with the FDMAS Alliance to share her story served as a turning point, inspiring Bia to expand her advocacy through social media. There, she documents life with FDMAS by sharing personal experiences, limitations, struggles, and successes.

Today, Bia continues to use her platform to showcase everyday realities, break stigma around accessibility and rare diseases, and ensure that voices like hers are heard in Latin America and beyond.

→ What is Fibrous Dysplasia/McCune-Albright Syndrome?

Fibrous dysplasia (FD) is a rare disease in which normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and sometimes affects multiple bones. The most common sites are the bones of the skull and face—Bia has hers in her left palate, cheek, and eye bone.

Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS), in which the endocrine system and skin are also affected. These are two very rare, chronic diseases without a cure.

→ Resources Bia Shared:

@fdysplasiaorg on Instagra,

https://fdmasalliance.org

#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness

Season 5, Episode 16: In conversation with Carolyn Haeler

In this special episode, Carolyn and I have a meaningful and relatable conversation about how we adapted to our dietary restrictions in a world where it is challenging. Carolyn’s story is remarkable, because instead of waiting for the change, she initiated the change. She is the CEO of Founder of Mightylicious Gluten Free Cookies,

To know Carolyn is to know she is a lifelong foodie, Carolyn’s love language has always been baking. In 2012, at the age of 31, she was diagnosed with celiac disease—a diagnosis that would change her life for better and for worse. After 9 months of illness, she was finally able to heal her body from the inside out. Carolyn became passionate about functional ingredients, nutrition, and living a gluten-free life. This led her to founding Mightylicious Gluten Free Cookies, a woman-owned company that produces Gluten Free Cookies (7 varieties including vegan and vegetarian options) as well as Three new Gluten Free Flour Mixes.  

They are available online at our website, Amazon and many retail outlets throughout the USA including Walmart and Krogers.  We were just awarded the Good Housekeeping 2025 Best Snack Award for our Mightylicious Gluten Free Oatmeal coconut cookies.

Where to find Carolyn?: 

https://www.instagram.com/mightyliciousfoods/

https://www.facebook.com/mightyliciousfoods

https://www.tiktok.com/tag/mightylicious

Season 5, Episode 15: In conversation with Brendan James Clark

→ About Brendan: Brendan is a patient who had a Desmoid Tumor. He was diagnosed with a desmoid tumor in his  abdomen at the age of 19, following a car accident, extended hospital stays and major abdominal surgery to confirm the diagnosis. This experience has given him  a unique perspective, both as a patient and future doctor.

He is currently a third-year medical student with a strong passion, especially for surgery and oncology. His  journey has been shaped by his personal experience as a desmoid patient, which has shown him the value of improving patient care, raising awareness for rare diseases, and advocating for better overall understanding. He wants to use his experience as a patient to become the kind of doctor he wishes he had throughout his journey.

→ What is a Desmoid tumor? They are rare growths that derive from connective tissue. 

→ Resources Brendan shared?:

https://dtrf.org/

https://rarediseases.org/rare-diseases/desmoid-tumor/

https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-soft-tissue-tumors/desmoid-tumor

Season 5, Episode 14: In conversation with Camryn Berry

→ About Camryn: Camryn Berry is a young adult living with Fibrous Dysplasia/McCune-Albright Syndrome. Through her experiences getting diagnosed with her condition as a child, growing up in rural Maine, she has had numerous experiences in her rare disease odyssey. Most importantly, being the first female child to receive a medication recommended by the NIH, ending her need for further surgeries.Now as an adult, Camryn is a remarkable individual who is paving a bright path forward as a “patient scientist”, a Ph.D. candidate at Boston Children’s Hospital and Harvard Medical School.  She has a unique intersection of her experiences as a patient living with FD/MAS and a Ph.D. researcher studying the disease. This journey has highlighted the importance of incorporating patient perspectives in shaping research questions, study designs, and outcome measures that reflect patient priorities. She is committed to demonstrating how meaningful collaboration between researchers and patients can lead to more impactful and relevant discoveries.
→ What is Fibrous Dysplasia/McCune-Albright Syndrome?: Fibrous dysplasia (FD) is a rare disease where normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and can sometimes affect more than one bone. The most common sites for fibrous dysplasia are the bones in the skull and face - mine is in my left palate, cheek, and eye bone. Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS). In MAS, the endocrine system and skin are also affected.

→ Resources Camryn shared?:

@fdysplasiaorg
@everylifeorg
@foundationforfacesofchildren

✨✨✨

#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity

#FibrousDysplasia

#McCuneAlbrightSyndrome

#FDMASAwareness

Season 5, Episode 13: In Conversation with Clio Lang
→ About Clio: Clio Lang, speaker, model and author of “No One’s Daughter” is a brain surgery survivor dedicated to finding a cure for hydrocephalus. She is a Rare disease legislative advocate through the Every Life Foundation.
It is important to note that Hydrocephalus can happen to anyone. Over 1 million patients in America have hydrocephalus and shunts have a 50% failure rate. Meaning that brain surgery is the only treatment for this condition.
She shares her experience of living with this condition—managing daily life as a rare disease patient, navigating the medical system, and finding joy even in difficult moments. Clio taught me the power of storytelling, the importance of using your voice to drive change, and what it means to stand firmly on the right side of a cause.
→ What is Congenital Hydrocephalus (Hydro)?: It is a condition where the brain cannot drain CSF itself and requires a brain shunt. She has a programmable shunt called a Codman Certas Plus, which is connected to a catheter running from her brain to her abdomen. She has a rare form of hydrocephalus resulting from a brain bleed at birth.
→ Resources Clio shared?: 
@hydroassoc
✨✨✨
#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #HydrocephalusAwareness #BrainHealth #LivingWithHydrocephalus #HydroWarrior #MedicalAdvocacy