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Two Rare Mama Bears

Cure CMD (Matty Manley & Megan Meyer)

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Two Rare Mama Bears
Two Rare Mama Bears

Two Rare Mama Bears

Cure CMD (Matty Manley & Megan Meyer)

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0
Plays
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About Us

Two Rare Mama Bears, a Cure CMD Podcast - where we discuss all things Congenital Muscular Dystrophy and Rare Disease...All subtypes, ages, abilities and topics with the intent to connect the CMD community. This podcast is about bringing together affected individuals, their family, researchers, clinicians, industry, and policy-makers to have conversations with the goal of moving the needle on the mission of Cure CMD. Hosts: Megan Meyer and Matty Manley.

Latest Episodes

043 - We Carry Kevan… with author, Kevan Chandler

As an introduction to our November book club, Kevan Chandler sat down with us for this coffee house interview about his book “We Carry Kevan”, an inspiring story of camaraderie of six friends taking a journey through Europe without Kevan’s wheelchair - just a backpack to carry him in. Kevan shared with us his motivations to write this book, why he chooses to share his story, and what’s on the agenda next for he and his adventure-seeking friends. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

27 MIN1 w ago
Comments
043 - We Carry Kevan… with author, Kevan Chandler

042 - Failure is not an option

A six-year old “honorary astronaut” has his wish come true - to meet a real-life astronaut, Anne McClain, from his hometown, Spokane, Washington. Listen to this podcast episode to learn how the power of a tribe made crowdsourcing work to make a hometown wish happen for Matty’s son in less than 24 hours. Matty shares how her son, Matthew, has become an “honorary astronaut” since he got a bi-pap shortly after his diagnosis with congenital muscular dystrophy. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

20 MIN3 w ago
Comments
042 - Failure is not an option

041 - Live BEYOND expectations...not live TO the expectations - Rachel Alvarez

Rachel Alvarez's episode 2 of 4 in her series with us (her 1st episode is ep. 033).... When faced with adversity (and at times, multiple layers of it) individuals can find themselves struggling to see past today while trying to look toward new possibilities. Rachel shares with listeners her personal “success” story that had its share of adversity, in hopes to give families perspective that not all dreams are lost when a diagnosis occurs. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

33 MINOCT 4
Comments
041 - Live BEYOND expectations...not live TO the expectations - Rachel Alvarez

040 - Bench to Bedside: Genetic Counseling (Casie Genetti, CGC)

Diligent work performed at a laboratory bench results in advances in the healthcare industry and benefits for the patients it serves. Translation of science to the community through medical interventions delivered to the patient populations is the job of researchers and clinicians - but the job of a Certified Genetic Counselor takes that a step further to pay attention to the social infrastructure to support those professions. Genetic counselors may interpret genetic testing results in terms the lay public can understand, discuss genetic implications of a diagnosis that a family should be made aware of, and/or help families navigate in research that could get them closer to a treatment or cure. In this episode we hear from Casie Genetti, Certified Genetic Counselor at Boston Children’s Hospital, who applies her knowledge with a group of clinical researchers focused on Congenital Myopathies and Orphan Disease research. Contact Casie at: BeggsLabGC@childrens.harvard.edu Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

28 MINSEP 17
Comments
040 - Bench to Bedside: Genetic Counseling (Casie Genetti, CGC)

039 - The White Space {Caitlin Parker}

Caitlin Parker, a North Carolina mama to a sweet young daughter with LAMA2, does a little bit of a tongue in cheek rant on accessible parking - but also educates listeners on laws that apply to rights users of the accessible spaces. She reminds us of a great quote she found on www.myparkingsign.com: “we prefer the phrase ‘accessible parking’ rather than ‘handicapped parking.’ We encourage you to use language that accurately characterizes the parking, instead of a word that inaccurately characterizes the people who use it”. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

46 MINSEP 6
Comments
039 - The White Space {Caitlin Parker}

038 - I love it when a plan comes together

Matty and Megan talk about SciFam take-aways and how they were processing information they valued from the conference, and further - how to communicate it to their medical teams. They then chat on strategies they (and listeners) can use to ensure the science is translated through patient communities and then activated to care teams. One action item that came out of SciFam, fairly universally across the board, was how can we (as a patient community) work to help spread the word of CMD within medical communities to educate those who infrequently come into contact with individuals experiencing neuromuscular conditions. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

23 MINAUG 24
Comments
038 - I love it when a plan comes together

037 - Pity Party

Matty and Megan find themselves in a bit of a pity party (or stuck in a rut) lately. While occasionally pity parties can comfort you, sometimes you keep asking yourself what did you do to deserve whatever it is that made you so sad in the first place. Through the course of this episode, Matty and Megan have decided to stop apologizing for disability, accommodations, or exceptions - and instead are shifting the tone to positive and having an inclusion mindset. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

22 MINAUG 9
Comments
037 - Pity Party

036 - Connecting rare disease individuals to researchers - Patient Registry & Sanford CoRDS

Rare disease individuals, including those with neuromuscular disorders, are often longing for a treatment, and hopefully one day… a cure. When planning a clinical trial, it is important for researchers to find enough eligible participants that can be contacted quickly. That’s where a patient registry (or database) is critical - there the patients’ clinical and genetic details are collected and made available to researchers. In our first cross podcast (the episode will air on 2 podcast shows), we discuss with Ben Forred CoRDs Cast, a rare disease podcast created by the team at Sanford Research (headquartered in Sioux Falls, SD). On their podcast, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide. Similar to the Congenital Muscle Disease International Registry, Sanford Research also has a rare disease registry, CoRDS, that connects patients and researchers everywhere. Find more information about Sanford Research at: www.sanfordresearch.org/cords Connect with Ben Forred, Director of Clinical Research at Sanford Research, on Twitter at: @SanfordBenF Find Two Rare Mama Bears on Facebook, Instagram & Twitter: @2raremamabears

32 MINJUL 25
Comments
036 - Connecting rare disease individuals to researchers - Patient Registry & Sanford CoRDS

035 - Always on the move - Patrick Veltri

“Life is about how you react to situations and the decisions you make” - insightful words from Patrick Veltri, a Canisius College student, living in Buffalo, NY who has taken his passion of sports and sports management and turned it into a future career path. Patrick, a Merosin Deficient CMD (LAMA 2) community member, teaches listeners to be positive, assertive, and confident about belonging in whatever their end goal is - and usually with this mindset, big things can happen! Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

28 MINJUL 9
Comments
035 - Always on the move - Patrick Veltri

034 - Don't poke the bear

There is only so much a Mama Bear can take when she is defending her cubs…. and why do special needs or medically complex parents feel the need to defend? Fight or flight? In this episode, Matty and Megan explore recent experiences that have evoked a full on mama bear response - and also what each are doing to try and discern when to let the mama bear instinct out and when to let it lie. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

33 MINJUN 25
Comments
034 - Don't poke the bear

Latest Episodes

043 - We Carry Kevan… with author, Kevan Chandler

As an introduction to our November book club, Kevan Chandler sat down with us for this coffee house interview about his book “We Carry Kevan”, an inspiring story of camaraderie of six friends taking a journey through Europe without Kevan’s wheelchair - just a backpack to carry him in. Kevan shared with us his motivations to write this book, why he chooses to share his story, and what’s on the agenda next for he and his adventure-seeking friends. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

27 MIN1 w ago
Comments
043 - We Carry Kevan… with author, Kevan Chandler

042 - Failure is not an option

A six-year old “honorary astronaut” has his wish come true - to meet a real-life astronaut, Anne McClain, from his hometown, Spokane, Washington. Listen to this podcast episode to learn how the power of a tribe made crowdsourcing work to make a hometown wish happen for Matty’s son in less than 24 hours. Matty shares how her son, Matthew, has become an “honorary astronaut” since he got a bi-pap shortly after his diagnosis with congenital muscular dystrophy. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

20 MIN3 w ago
Comments
042 - Failure is not an option

041 - Live BEYOND expectations...not live TO the expectations - Rachel Alvarez

Rachel Alvarez's episode 2 of 4 in her series with us (her 1st episode is ep. 033).... When faced with adversity (and at times, multiple layers of it) individuals can find themselves struggling to see past today while trying to look toward new possibilities. Rachel shares with listeners her personal “success” story that had its share of adversity, in hopes to give families perspective that not all dreams are lost when a diagnosis occurs. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

33 MINOCT 4
Comments
041 - Live BEYOND expectations...not live TO the expectations - Rachel Alvarez

040 - Bench to Bedside: Genetic Counseling (Casie Genetti, CGC)

Diligent work performed at a laboratory bench results in advances in the healthcare industry and benefits for the patients it serves. Translation of science to the community through medical interventions delivered to the patient populations is the job of researchers and clinicians - but the job of a Certified Genetic Counselor takes that a step further to pay attention to the social infrastructure to support those professions. Genetic counselors may interpret genetic testing results in terms the lay public can understand, discuss genetic implications of a diagnosis that a family should be made aware of, and/or help families navigate in research that could get them closer to a treatment or cure. In this episode we hear from Casie Genetti, Certified Genetic Counselor at Boston Children’s Hospital, who applies her knowledge with a group of clinical researchers focused on Congenital Myopathies and Orphan Disease research. Contact Casie at: BeggsLabGC@childrens.harvard.edu Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

28 MINSEP 17
Comments
040 - Bench to Bedside: Genetic Counseling (Casie Genetti, CGC)

039 - The White Space {Caitlin Parker}

Caitlin Parker, a North Carolina mama to a sweet young daughter with LAMA2, does a little bit of a tongue in cheek rant on accessible parking - but also educates listeners on laws that apply to rights users of the accessible spaces. She reminds us of a great quote she found on www.myparkingsign.com: “we prefer the phrase ‘accessible parking’ rather than ‘handicapped parking.’ We encourage you to use language that accurately characterizes the parking, instead of a word that inaccurately characterizes the people who use it”. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

46 MINSEP 6
Comments
039 - The White Space {Caitlin Parker}

038 - I love it when a plan comes together

Matty and Megan talk about SciFam take-aways and how they were processing information they valued from the conference, and further - how to communicate it to their medical teams. They then chat on strategies they (and listeners) can use to ensure the science is translated through patient communities and then activated to care teams. One action item that came out of SciFam, fairly universally across the board, was how can we (as a patient community) work to help spread the word of CMD within medical communities to educate those who infrequently come into contact with individuals experiencing neuromuscular conditions. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

23 MINAUG 24
Comments
038 - I love it when a plan comes together

037 - Pity Party

Matty and Megan find themselves in a bit of a pity party (or stuck in a rut) lately. While occasionally pity parties can comfort you, sometimes you keep asking yourself what did you do to deserve whatever it is that made you so sad in the first place. Through the course of this episode, Matty and Megan have decided to stop apologizing for disability, accommodations, or exceptions - and instead are shifting the tone to positive and having an inclusion mindset. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

22 MINAUG 9
Comments
037 - Pity Party

036 - Connecting rare disease individuals to researchers - Patient Registry & Sanford CoRDS

Rare disease individuals, including those with neuromuscular disorders, are often longing for a treatment, and hopefully one day… a cure. When planning a clinical trial, it is important for researchers to find enough eligible participants that can be contacted quickly. That’s where a patient registry (or database) is critical - there the patients’ clinical and genetic details are collected and made available to researchers. In our first cross podcast (the episode will air on 2 podcast shows), we discuss with Ben Forred CoRDs Cast, a rare disease podcast created by the team at Sanford Research (headquartered in Sioux Falls, SD). On their podcast, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide. Similar to the Congenital Muscle Disease International Registry, Sanford Research also has a rare disease registry, CoRDS, that connects patients and researchers everywhere. Find more information about Sanford Research at: www.sanfordresearch.org/cords Connect with Ben Forred, Director of Clinical Research at Sanford Research, on Twitter at: @SanfordBenF Find Two Rare Mama Bears on Facebook, Instagram & Twitter: @2raremamabears

32 MINJUL 25
Comments
036 - Connecting rare disease individuals to researchers - Patient Registry & Sanford CoRDS

035 - Always on the move - Patrick Veltri

“Life is about how you react to situations and the decisions you make” - insightful words from Patrick Veltri, a Canisius College student, living in Buffalo, NY who has taken his passion of sports and sports management and turned it into a future career path. Patrick, a Merosin Deficient CMD (LAMA 2) community member, teaches listeners to be positive, assertive, and confident about belonging in whatever their end goal is - and usually with this mindset, big things can happen! Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

28 MINJUL 9
Comments
035 - Always on the move - Patrick Veltri

034 - Don't poke the bear

There is only so much a Mama Bear can take when she is defending her cubs…. and why do special needs or medically complex parents feel the need to defend? Fight or flight? In this episode, Matty and Megan explore recent experiences that have evoked a full on mama bear response - and also what each are doing to try and discern when to let the mama bear instinct out and when to let it lie. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

33 MINJUN 25
Comments
034 - Don't poke the bear
hmly
himalayaプレミアムへようこそ聴き放題のオーディオブックをお楽しみください。