Best Zebra Developers Podcasts (2024)

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Hemophilia with Patrick James Lynch From Believe limited 40:38

13h ago40:38

40:38

Send us a text Patrick James Lynch is a Hemophilia patient, and advocate, fim maker and podcaster. His films include Bomardier Blood, Deliver Us and My Beautiful Stutter as well as many others, He has been won several awards including the Rare impact award from the National Association for Rare Disorders (NORD) the Meritorious service award in and …

1
Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD) 39:08

5d ago39:08

39:08

Send us a text This week Rare Connection goes back to it's roots with a condition covered by the Medical Nutrition Equity Act if it were to pass. The MNEA would mandate that health insurance cover medically prescribed food, formula and vitamins for those who need them. At the beginning of last season in February Nutrition Equity became Rare Conne68…

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Hypohidrotic Ectodermal Dysplasia With Rebekah From Oregon 29:46

16d ago29:46

29:46

Send us a text Join me as I talk with Rebekah about her child Mason's diagnosis with HypoHidrotic Ectodermal Dysplasia. Mason is now years old and he is already advocating for his health with his mother's help. HypoHidrotic Ectodermal Dysplasia is a rare genetic condition characterized by the bodies inability to sweat, sparse hare, tooth loss and e…

1
Menkes Disease With Daniel DeFabio From New York 1:00:12

29d ago1:00:12

1:00:12

Send us a text Nicknamed Kinky Hair Syndrome Menkes Syndrome is tested for in cases where the child isn't getting enough copper which can cause hair loss. It is often the first sign. It isn't on the newborn screening currently, but their are clinical trials for it. Go to clinicaltrials.gov for more information if your child has it. Babies won't sho…

1
Pura Syndrome With Melissa From Washington 38:41

1M ago38:41

38:41

Send us a text In this episode I talk with Melissa from the Pura Syndrome Foundation about her child Taylor now 27 who was diagnosed with Pura Syndrome 2 years after it was discovered in 2014. Listen along and learn about this condition and Melkisa's roles with the Pura Syndromde Foundation over the years from working on the grants committee, to fu…

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Severe Methylene Tetrahydro Folate Reductase (MTHFR) With Grace from Florida 57:19

1M ago57:19

57:19

Send us a Text Message. In this episode I talk with Grace a parent of 2 children. Her youngest daughter Carson, who just turned 4 has Severe MTHFR. MTHFR is the rarest form of Homocystinuria. With Severe MTHFR they do NOT follow a low protein diet like classical HCU. In addition to being a parent with this rare condition, Grace also is a director o…

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Introducing “The Youth Development Center” 31:35

2M ago31:35

31:35

Introducing the newest series from NHPR’s award-winning Document team: “The Youth Development Center.” New Hampshire has sent its most troubled kids to the same juvenile detention center for more than a century. It's a place that was supposed to nurture them, that instead hurt them – in some of the worst ways imaginable. It's now at the center of o…

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High Functioning Autism (Aspburger's Syndrome) With Kadin From Ohio 17:26

2M ago17:26

17:26

Send us a text Listen along as I talk with Kadin about High Functioning Autism. Listen to Kadin's diagnosis journey. Find out about the signs and symptoms in both children and adults, How Kadin is getting along in college, and is aspirations for the future. I am trying to turn this podcast into a Nonprofit, and I need board members if you are inter…

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Rare Connection Episode 11: Acoustic Neuroma with Shari from California 46:52

3M ago46:52

46:52

Send us a text Shari was diagnosed with an acoustic neuroma (a rare benign tumor) In the removal of this tumor she had a stroke. In her book "When Life Gives You Lemons, Make Cranberry Juice" She talks about the removal of this tumor and how it will forever impact her life. Shari sees the Good things in life as the sweet "Cranberries" and the Bad t…

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Rare Connection Episode 10: AI Assist 30:31

3M ago30:31

30:31

Send us a text Meet Joel Cofounder of Endurant Health. Endurant Health has developed an AI tool to help diagnose rare disease patients. Joel's mother was diagnosed with a rare genetic metabolic condition called Homocystinuria. (HCU). Together with friends who are undergoing similar battles finding proper diagnosis they founded Endurant Health to Ai…

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Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma 30:21

3M ago30:21

30:21

Send us a text Join me as I talk to Sky , mother of 3 children. about her daughter Presley's diagnosis with Malan Syndrome. Malan Syndrome is an overgrowth disorder that is considered as ultra rare. Their are only 300 cases of this condition world wide. Join me as I ask about her 8 year journey to diagnosis, Symptoms, Her role in Co-founding The Ok…

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Rare Connection Episode 8: Mast Cell Activation Syndrome & Growth Hormone Deficiency 1:02:59

3M ago1:02:59

1:02:59

Send us a text Join me as I welcome Jessica back to talk about Mast Cell Activation Syndrome and Growth Hormone deficiency. Learn about how they are diagnosed symptoms, and triggers Support the Show.By Joanna

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Primary Sclerosing Cholangitis,& Trigeminal Neuralgia 1:05:51

4M ago1:05:51

1:05:51

Send us a text In this episode I talk with Christina, Who is the host of Speaking in Spoons and a patient with Primary Sclerosing Cholangitis (PSC), Trigeminal Neuralgia and Hemiplegic Migraines. The aim of this podcast is to connect those with similar conditions, educate medical professionals, and hopefully help find treatments and clinical trials…

1
Rare Connection Episode 6: Calciphylaxis and Multiple Endocrine Neoplasia Type 1 1:33:06

5M ago1:33:06

1:33:06

Send us a text Dubbed the man who died twice and Hod brought back to life, Kevin Hills Story appears in 45 national and international Newspapers and Magazines. Listen along as I talk with Kevin about his medical conditions Calcifylaxis and Multiple Endocrine Neoplasia Type 1(MEN1). You can see the full video on YouTube on my channel Rare Chef also …

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Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS) 29:12

5M ago29:12

29:12

Send us a text In this episode I talk with Nico who has Congenital Central Hypoventilation Syndrome (CCHS). Nico worked for CCHS Network inc. which his mother started. He revamped the website and planned a global conference for CCHS patients. After losing friends to CCHS he decided to branch out and work with people with disabilities at large. He b…

1
Rare Connection Episode 4: Pyruvate Dehydogenase Defiecency (PDCD) 35:44

5M ago35:44

35:44

Send us a Text Message. In this episode I talk with Layna (parent and advocate with Hope for PDCD https://www.hopeforpdcd.org/) . PDCD is a inherited metabolic condition that has to do with Carbohydrate metabolism. They follow the Keto diet. Layna is responsible for fundraising, education, social media, education, and advocacy. She has a youtube ch…

1
Rare Connection Episode 3: GastroParesis and POTS 24:26

5M ago24:26

24:26

Send us a text Join me as I talk with Author, Student and Patient Charleigh. Charleigh has Gastroparesis (GP) and Post Orthostatic Tachycardia Syndrome (POTS). She is also a student at Pratt University and an Author of 2 books Rule 25: Don't Forget the Target and Demon Scout. In this episode Charleigh talks about her symptoms of both POTS and GP, D…

1
Rare Connection Episode 2 Wendy Psoriatic Arthritis 46:46

5M ago46:46

46:46

Send us a text In this episode, I talk with Wendy about her life as a Special Education Teacher, and yoga instructor and her new book "Kiss You Love, Goodbye" Wendy talks about her how she found her knew purpose in life after she wasn't able to teach again. How she adapted to life after teaching. Support the Show.…

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Rare Connection Episode 1: Homocystinuria (HCU) Jenifer from Cananda 23:14

7M ago23:14

23:14

Send us a text In this episode Jenifer tells her story about how she was diagnosed with Homocystinuria (HCU) and how she was diagnosed. She will tell where she goes for help and other resources that have helped her along the way. At 55 Jenifer is one of the older HCU patients. At one time they thought that those with Homocystinuria wouldn't live pa…

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Nutrition Equity Episode 13: Diabetes Awareness month With Jessica 43:22

10M ago43:22

43:22

Send us a text In this episode of Nutrition Equity I talk with Jessica, a patient with both Classical Homocystinuria and Diabetes. Jessica will talk about the complexities of dealing with two conflicting conditons. Homocystinuria requires a low protein diet and Diabetes requires you to watch your carbs and sugar intake. While nuts aren't allowed fo…

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Nutrition Equity Episode 12: HCU Awareness Month Cobalamin G Heather Parent 1:00:18

10M ago1:00:18

1:00:18

Send us a text In this episode I talk with Heather a parent of a child with Cobalamin G. Cobalmin disorders are named for the order in which they were discovered. Some Cobalmin disorders fall under the Homocystinuria Family, some are Methyl Malonic acidemia's and some are both. They are tested for on Newborn screening, but often missed. Heather's c…

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Nutrition Equity Episode 11: HCU Awareness Month Bharat Assistant Taste Connections 21:34

11M ago21:34

21:34

Send us a text In this episode, Bharat disscuses his personal journey as an Homocystinuria (HCU) patient, his role at taste connections (one of the medical food companies). Bharat is one of the few classical Homocystinuria patients that is also diabetic. He discusses the types of restaurants he likes and the coverage in his state for medical food, …

1
Nutrition Equity Episode 10: Danae Bartke Exeutive Director HCU Network America 40:42

11M ago40:42

40:42

Send us a text This month is Homocystinuria (HCU) Awareness Month. Today I am joined by Danae Bartke the Executive Director of HCU Network America. Two of the three types of Homocystinuria would be covered if the Medical Nutrition Equity Act were to pass. Currently we are trying to get this crucial bill reintroduced into congress again. In this epi…

1
Nutrition Equity Episode 8: Short Bowel Syndrome 32:39

12M ago32:39

32:39

Send us a Text Message. In this episode I talk with Andrew Jablowski Founder of the Short Bowel Syndrome foundation inc. Andrew is a patient advisor and physician advisor for NAIA Pharmacuticals formerly Shire pharmacuticals. Andrew will talk about his life with Short Bowel Syndrome, his job as a physician and patient advisor, and his foundation. Y…

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Nutrtion Equity Episode 9: Classical Homocystinuria (HCU) Newborn Screening Awareness Month 49:30

12M ago49:30

49:30

Send us a text Listen in as I talk with Valerie a mother of 18 year old Summer who was diagnosed late with Classical Homocystinuria. A rare genetic condition that can be fatal if not caught early. As a result of her late diagnosis Valerie's child Summer had strokes in utero which caused learning disabilities. You can learn more about Homocystinuria…

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Nutrition Equity Episode 7: Cobalamin Disorders 53:04

1y ago53:04

53:04

Send us a Text Message. Listen as I talk with Brittany, parent of two children with Cobalamin G and the head of the Cobalamin Steering Committee for HCU Network America. Brittany will discuss her reasons for advocacy, her role on the steering committee, and the issues faced by those with Cobalamin Disorders. Support the Show.…

1
Nutrition Equity Episode 6: Tyrosinemia (TYR) 31:35

1y ago31:35

31:35

Send us a text In this episode of Nutrition Equity I talk with Andrew. A Tyrosinemia patient. Listen along as we learn about Andrew's battles with Tyrosinemia and what it is like to live with this rare condition. Learn about the issues he and others have faced with getting medical foods and formula. What it is like now vs When he was a child. Suppo…

1
Nutrition Equity Episode 5: Eosiniphilia 26:25

1y ago26:25

26:25

Send us a text Listen in as we talk with patient and biologist Aneta about Eosinophilia. Thanks to Aneta for doing this episode last minute because of a cancelation with the original person I was going to interview. Support the Show.By Joanna

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Nutrition Equity Episode 4 : Cystic Fibrosis (CF) 1:03:42

1y ago1:03:42

1:03:42

Send us a text In this episode we talk with Jessica a Cystic Fibrosis patient about her journey with CF, listen in as she discuses here experiences growing up with CF and discusses some of the common misconceptions of CF. She will also discuss her diet and a medical formula and medications that she puts through her g-tube. If you are reading this p…

1
Susan MSUD chair for PKU and Allied Disorders talks about MSUD 24:42

1y ago24:42

24:42

Send us a text This video is the third episode of Nutrition Equity a podcast devoloped to promote the Medical Nutriiton Equity Act . In this episode we talk with Susan Neeleman of the MSUD Community. Susan is the Vice President of the New England Connection for PKU and Allied Disorders (NECPAD), the editor cf tShe is a powerful leader in the MSUD a…

1
Nutrition Equity Episode 2 PKU with Jill 1:08:36

1y ago1:08:36

1:08:36

Send us a Text Message. Support the Show.By Joanna

1
Kelly the National Homocystinuria representative 42:25

1y ago42:25

42:25

Send us a text In this episode we talk ro Kelly Waters the national Homocystinuria (HCU) Represntative about Homocystinuria and her advocacy work. We also discus her symptoms, diagnosis, and how you can help advance treatment. I am working on a visual version of this podcast also which I hope to have up in a couple weeks. It had to be retaped. Supp…

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The Last EVER Episode of the Big Life Kids Podcast! 9:39

2y ago9:39

9:39

In our final episode, Zara and Leo face the ultimate challenge... the Believemobile is GONE! Join us in our farewell episode as we discover how to deal with big life changes. Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eidens and Big Life Journal team. Written and directed by Sarah Cyrano. Sound desi…

1
Zara and Leo are all GROWN-UP! Is it time to say goodbye? 19:21

2y ago19:21

19:21

Zara and Leo are grown-ups! They meet to dig up their time capsule and remember the good times. Find out how to deal with life’s BIG CHANGES with gratitude, and discover the blind explorer who traveled far and wide to face life’s challenges head-on. Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eidens …

1
Are YOU Afraid of the Moany Monster? 8:46

2y ago8:46

8:46

In this episode, Ava from Iran shares how she dealt with the difficulties of learning online, while Zara and Leo swap spooky stories about the perils of COMPLAINING over the campfire! Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eidens and Big Life Journal team. Written and directed by Sarah Cyrano. S…

1
How to COMPLAIN so much that you turn into a ZEBRA!!! 18:23

2y ago18:23

18:23

Leo is bored. Really bored. And his favorite thing to do when he’s bored? Complain. But sometimes complaining doesn’t do you any favors... especially when you’ve turned into a zebra. Find out about COMPLAINING MINDSET, and meet the inventor who turned his problem into an opportunity to make things better! Additional show notes available at biglifej…

1
Disco skating for the WIN... or for the LOLS?! 9:22

2+ y ago9:22

9:22

In this episode, Maggie from Melbourne in Australia shares how she enjoys each day of learning to use her skate shoes, and Zara and Leo get swept up in an epic ice skating disco competition! Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eidens and Big Life Journal team. Written and directed by Sarah Cy…

1
Enjoy the journey and LIVE IN THE JUNGLE... or the moment! 17:44

2+ y ago17:44

17:44

Zara and Leo are traveling by night bus along the coast of Brazil! Find out why sometimes the journey is more important than the destination, and meet the man who created his own rainforest, through love, hard work, and a TREE-mendous amount of patience! Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Ei…

1
Sibling CONFLICT: Resolved LIVE on reality TV... in the FOREST! 8:40

2+ y ago8:40

8:40

In this episode, Elijah from Utah in the United States tells us how he and his brother Gideon worked through a conflict. Meanwhile, Zara and Leo deal with their own dispute... on a reality TV show in the forest! Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eidens and Big Life Journal team. Written and…

1
SIBLING RIVALRY: Battleships at the Lake! 18:09

2+ y ago18:09

18:09

It’s time for the biggest battle of the century, ZARA vs LEO in a head-to-head contest at the lake! Find out why SIBLING RIVALRY is such a powerful force, and meet the fiercest, most hard-working sisters on the planet - it’s Venus and Serena Williams! Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eiden…

1
Zara and Leo enter... the “Better”-Verse!!! 9:24

2+ y ago9:24

9:24

In this episode, Aariz from Toronto in Canada shares how he deals with tough stuff, and we take a trip to the “better”-verse, where everyone is having more fun than you... or are they? Additional show notes available at biglifejournal.com/podcast Credits: Produced by Alexandra Eidens and Big Life Journal team. Written and directed by Sarah Cyrano. …

1
Welcome to Good-Vibes-ONLY Land! ...or is it? 17:12

2+ y ago17:12

17:12

Episode 61: Welcome to Good-Vibes-ONLY Land! ...or is it? Zara and Leo take a trip to Good-Vibes-Only Land, but there’s something not quite right about this place... Discover why it’s okay not to be okay, and meet the mental health activist who found a way to tackle TOXIC POSITIVITY! Additional show notes available at biglifejournal.com/podcast Cre…

1
FAIL School Musical: How to deal with “BAD” GRADES! 7:27

3y ago7:27

7:27

Episode 60: FAIL School Musical: How to deal with “BAD” GRADES! In this episode, Liyah from the Philippines tells us about her struggles learning Arabic and we discover how Zara and Leo approach their positive and negative feedback at school! Children listening will discover that they can choose to be proud of themselves and that feedback can teach…

1
Lady Pink & the SUPERHERO Comic-Coscars! 18:42

3y ago18:42

18:42

Episode 59: Lady Pink & the SUPERHERO Comic-Coscars! Join us for the biggest comic book event of the year: the Comic-Coscars! How will Leo cope when he wins the worst award of the night? Find out how to look beyond EXTERNAL VALIDATION and meet the graffiti artist who didn’t care what ANYONE thought of her artwork! An episode packed with advice for …

1
Zara, Leo and Brielle Face their FEARS at the Dentist! 7:05

3y ago7:05

7:05

Episode 58: Zara, Leo and Brielle Face their FEARS at the Dentist! In this episode, Brielle from the Philippines tells us about facing one of her greatest fears: getting x-rays at the dentist! Meanwhile, Leo has his annual teeth check-up. Find out how they both rise to the challenge! Additional show notes available at biglifejournal.com/podcast Cre…

1
I’m a COURAGEOUS Lion... Get Me Out of Here! 16:44

3y ago16:44

16:44

Episode 57: I’m a COURAGEOUS Lion... Get Me Out of Here! Zara and Leo head to the African Serengeti to shoot a wildlife documentary! But when they take a shortcut through a cornfield, things get strange... and scary. Find your BRAVERY and meet the African inventor who found a way to protect his herd from the local lions. Additional show notes avail…

1
Count Mapula’s Dracula Spectacula: The Ultimate Countdown! 6:46

3y ago6:46

6:46

Episode 56: Count Mapula’s Dracula Spectacula: The Ultimate Countdown! In this episode, MaKayla from Florida in the United States faces the ultimate test of patience at school. Meanwhile, Zara and Leo are at a theme park waiting in line for the most popular ride. Will they EVER get a turn? Additional show notes available at biglifejournal.com/podca…

1
Play the WAITING game in the Wicked Wild West! 16:03

3y ago16:03

16:03

Episode 55: Play the WAITING game in the Wicked Wild West! Sheriff Zara is headed to the Wild West, investigating a series of strange cases aboard the Smokey Plain Steam Train. Find out how to be PATIENT for things that are just out of reach and meet the Californian musician who used patience to overcome big obstacles. Additional show notes availab…

1
Zara Takes the Lead on the BASKETBALL Court! 8:20

3y ago8:20

8:20

Episode 54: Zara Takes the Lead on the BASKETBALL Court! In this episode, Raya from Philadelphia in the United States faces a big challenge when her father has surgery and she needs to step up! Meanwhile, Zara and Leo’s streetball team are playing the match of their lives against their arch-rivals. Children will learn about LEADERSHIP and how great…

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