Кращі подкасти про muscular development (2024)

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Dyskeratosis Congenita with Damien from Arizona improved sound from live 1:13:28

16h ago1:13:28

1:13:28

Send us a text This is an audio playback from the live version of my podcast earrlier today with Damien. If you were listening to the live version, I rerecorded my part to make it clearer. I am hoping that upgrading my internet plan will help with the video version. This episode is on Dyskeratosis Congenita (bone marrow failure) by means of Short T…

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Congenital Muscular Dystrophy Newborn Screening Awareness Month 20:45

6d ago20:45

20:45

Send us a text Despite Congenital Muscular Dystrophy not being tested for at birth, some companies are working on getting it passed. This is Newborn Screening Awareness Month. Since the bill hasn't been reauthorized in all states lack of funding could be harming those who are born with new conditions that may or may not be able to be tested dependi…

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Hemophilia with Patrick James Lynch From Believe limited 40:38

16d 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 …

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

21d 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

1M 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…

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

1M 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…

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Pura Syndrome With Melissa From Washington 38:41

2M 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

2M ago57:19

57:19

Send us a text 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 on the boa…

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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

4M 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 showJoanna

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

5M 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…

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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…

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

5M ago35:44

35:44

Send us a text 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 channel of …

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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…

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Rare Connection Episode 2 Wendy Psoriatic Arthritis 46:46

6M 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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The Very First Place To Look When You Hit A Plateau 55:54

9M ago55:54

55:54

Is there anything more frustrating than hitting a plateau? Put your listening ears on, Fam- FigureChick911 throws down in this episode with straight talk on how to bust your plateau with the very first and place to look when you hit that ceiling and actionable steps to break through it.

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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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Recreation Without Limits 35:00

11M ago35:00

35:00

In this week's episode, we're joined by Heather Lindsay to discuss what recreational therapy is, the different forms it can take, and the positive benefits that come from the experiance.Listen Frederick

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The Biggest Mistake Women Make When Trying To Lose Weight 56:45

11M ago56:45

56:45

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

11M 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, …

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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…

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Community Support Featuring the Arc of Frederick County 25:21

12M ago25:21

25:21

In this episode, our listeners can learn all about the programs and services offered by the Arc of Frederick county and ways that employers and volunteers can get involved!Listen Frederick

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How-To Stay Congruent With Your Nutrition Goals While Traveling 28:26

12M ago28:26

28:26

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Nutrition Equity Episode 8: Short Bowel Syndrome 32:39

1y ago32:39

32:39

Send us a text 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. You can le…

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

1y 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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Providing Holistic Support for Children in Need: Just in Power Kids with Shannon Berk 34:30

1y ago34:30

34:30

For pediatric cancer month we're joined by guest Shannon Berk of Justin Power Kids. Shannon is a physical therapist and co-founder of Just in Power Kids. She joins us today episode to discuss pediatric cancer, their foundation, and mission with Just in Power Kids. Just in Power kids was founded together with her husband Justin when their love of se…

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Nutrition Equity Episode 7: Cobalamin Disorders 53:04

1y ago53:04

53:04

Send us a text 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…

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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…

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Spinal Muscular Atrophy: Featuring the Fighting for Kaiden Foundation & the Eakin family 31:25

1y ago31:25

31:25

In today’s episode, we are going to learn about Spinal Muscular Atrophy, often referred to as SMA through the eyes of a local family. We'll also be discussing resources available to families affected by an SMA diagnosis, specifically the Fighting for Kaiden Foundation.Listen Frederick

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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 showJoanna

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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…

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Navigating an IEP (Individualized Education Program) 23:06

1y ago23:06

23:06

In this episode Chloe chats with Christina Ruben, a speech therapist who has spent her career working in both school and outpatient therapy settings, who explains what an IEP is, the IEP process and the collaboration that happens to set children up for success.The Pediatric Movement Center

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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…

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

1y ago1:08:36

1:08:36

Send us a text Support the showJoanna

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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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Joe Seeman, Emily Schubert & Robin Strand MD Global Muscle S5 E33 2:19:11

1+ y ago2:19:11

2:19:11

Another awesome trio of special guests this week for MD Global Muscle guys.First up we have HUGE Open Canadian competitor Robin Strand, after a successful showing at the New York Pro he is now gunning for this weekend's Toronto Pro.Next up was rising women's physique star Emily Schubert, after taking two consecutive 2nd places behind current WPD Ol…

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Supporting Sensory Needs at Home: Dysregulation 40:49

1+ y ago40:49

40:49

In this episode we are joined by Stephanie Baldwin, an Occupational Therapist at Pediatric Movement Center. She shares some key points about dysregulation (which is poorly regulated emotional response), indicators of sensory seeking, and some useful tips to use at home.The Pediatric Movement Center

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Healthier Strategies with Dr. Obidi 45:49

1+ y ago45:49

45:49

In this episode, we are joined by Dr. Obidi, a pediatrician in Hagerstown, Maryland who has a passion to serve and educate his local community. In this episode listeners will get an inside perspective on the multifaceted layers that come with childhood obesity. Dr. Obidi also gives us some strategies, resources and tools we can implement today to b…

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Understanding Big Emotions; Actionable Advice 30:46

1+ y ago30:46

30:46

In this episode, we were joined by Whitney Thompson, a pediatric mental health therapist and author of the Superhero Blog that uses popular characters to help children understand big emotions. Ms. Thompson explores ways to have conversations with children about big emotions and how to help them navigate difficult aspects of development, such as wor…

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The Science of Movement: How to tackle tummy time and early milestones 34:57

1+ y ago34:57

34:57

On today’s episode we will be interviewing Courtney Young who is a Doctor of Physical Therapy and specializes in pediatrics. Courtney has over 17 years of pediatric rehabilitation experience in her field. She has worked in a variety of settings including: a neonatal intensive care unit, a pediatric rehab hospital and in outpatient pediatric clinics…

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Episodes 150 & 151- Unpacking the Enigma of “Fit & Toned” with an Intro To Muscular DeVelopment 1:47:52

1+ y ago1:47:52

1:47:52

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Breaking Barriers with Austin Munro 33:39

1+ y ago33:39

33:39

In today's episode, we will hear from a community member who lives a very full life and happens to have Spinal Muscular Atrophy. We discuss knocking down barriers about the way society views disability and inter-abled relationships as well as breaking down the barriers we tend to define ourselves by. If you are curious about seeing things through s…

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Nutrition for Today’s Woman: 5 Part Series 4:40:30

1+ y ago4:40:30

4:40:30

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The Children's Charity that is Enriching the Lives of Children in Washington D.C., Maryland, and Virginia 34:02

2y ago34:02

34:02

In this episode Chloe chats with Leigh Burke, Executive Director of Variety, The Children's Charity of the National Capital Region and learns about the various ways that the charity supports the children of our community. Listeners will also learn the ways that they can help support this incredible charity (Spoiler-it's as easy as going to the movi…

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