MEF2Cast

• Episode 10: Putting In The Work With Caroline Claflin

  In today’s episode, we are joined by Caroline Claflin, parent to Darwin and co-founder of the MEF2C Family Foundation.Caroline joins us to discuss Darwin’s journey to diagnosis, her adventures in being an MCHS parent, and tips and tricks learned along the way. We also speak about the MEF2C Family Foundation and its role in the community. Some highlights include:The power of a mother’s intuition and how it led her to seek diagnosis The work that people with MCHS put in every dayThe therapies that have been most impactful for DarwinThe importance of independence for children like DarwinThe relationships between special needs and typical siblingsCaroline’s experiences in advocating for resourcesThe personal growth that comes from parenting someone with MCHSWhat Caroline’s hopes for the MEF2C Family Foundation areAnd so much more!If you liked this episode, please comment, review, and subscribe to hear more episodes like this one. If you have any questions, concerns, or are interested in being a guest, please reach out to us via Facebook or email.Thank you to all of our listeners for their time. We love you all!Find us on Facebook: https://www.facebook.com/profile.php?id=61572393046749Email us: [email protected]

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• Episode 9: Spelling to Communicate (S2C) with Sam Fox

  In today’s episode, we are joined by Sam Fox, Spelling to Communicate (S2C) practitioner and owner of Beyond Speech Therapy Center in Munroe Falls, OH.Sam joins us to discuss spelling as a means of communication for non-speaking/unreliably speaking people and the S2C system. Some highlights include:The philosophy and controversy around spelling Who could benefit from spelling to communicateThe challenges of apraxia and how spelling can helpThe relationship between the speller and communication partnersThe importance of presuming competenceThe doors that spelling can open for peopleBooks, movies, and other media telling spellers’ storiesThe eloquence and insight that many spellers havePersonal success stories of clientsAnd much more!Please check out Beyond Speech Therapy Center at the links below:https://www.beyondspeechtherapycenter.com/https://www.facebook.com/BeyondSpeech/Learn more about S2C and find a practitioner in your area here: i-asc.orgSome links to things mentioned during the episode:Underestimated: An Autism Miracle- https://a.co/d/amu8OqXLights in the Darkness- https://a.co/d/4TZmOsuSpellers: The Movie- https://www.youtube.com/watch?v=8h1rcLyznK0The Telepathy Tapes- https://open.spotify.com/show/1zigaPaUWO4G9SiFV0Kf1cIf you liked this episode, please comment, review, and subscribe to hear more episodes like this one. If you have any questions, concerns, or are interested in being a guest, please reach out to us via Facebook or email.Thank you to all of our listeners for their time. We love you all!Find us on Facebook: https://www.facebook.com/profile.php?id=61572393046749Email us: [email protected]

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• Episode 8: Pathways to Hope with James Kelly & Lorena García Fernández

  In today’s episode, we are joined by James Kelly and Lorena In today’s episode, we are joined by James Kelly and Lorena García Fernández, founders of the MEF2C Foundation and parents to Elijah. James is also a board member for Rare Bird.Lenora and James join us to discuss their journey to diagnosis with Elijah and how that inspired them to start the MEF2C Foundation. They tell us about the ins-and-outs of Elijah’s everyday life and tips and tricks they've picked up along the way. We also discuss their experience with using the ketogenic diet to control Elijah’s seizures. Next, we discuss the lessons learned parenting someone with MCHS and their approach to running their foundations. Finally, we discuss their vision for the future, both for Elijah and MCHS as a whole.If you liked this episode, please comment, review, and subscribe to hear more episodes like this one. If you have any questions, concerns, or are interested in being a guest, please reach out to us via Facebook or email.Thank you to all of our listeners for their time!Find us on Facebook: https://www.facebook.com/profile.php?id=61572393046749Email us: [email protected] the MEF2C Foundation: mef2cfoundation.orgFind Rare Bird: rare-bird.org

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• Episode 7: From Diagnosis to Advocacy with Chris & Erin: MEF2C Family Foundation Cofounders

  In today’s episode, we are joined by Erin Kindrachuk and Chris Kninitski, co-founders of the MEF2C Family Foundation and parents to Sam.Erin and Chris join us to discuss Sam’s journey to diagnosis, what Sam’s life looks like now, and lessons they learned along the way. Next, we talk about the highs and lows of parenting someone with MCHS and how it has transformed them as people. Chris and Erin tell us about how they decided to help start the family foundation and how they hope the foundation can support the community. Finally, we discuss Chris and Erin’s hopes for the future for Sam, for the foundation, and the community at large.If you liked this episode, please comment, review, and subscribe to hear more episodes like this one. If you have any questions, concerns, or are interested in being a guest, please reach out to us via Facebook or email.Thank you to all of our listeners for their time!Find us on Facebook: https://www.facebook.com/profile.php?id=61572393046749Email us: [email protected] the MEF2C Family Foundation: mef2cfamilyfoundation.org

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• Episode 6: The Inner Workings of MCHS with Dr. Christopher Cowan

  In today’s episode of the MEF2Cast, we interviewed Dr. Christopher Cowan, a neuroscientist studying neurodevelopmental conditions like MCHS. Dr Cowan joins us to discuss the role of MEF2C in the brain and its development and how that manifests in MCHS. Dr Cowan shares some insight on the relationship between autism and MCHS. We also discuss target site blockers (TSBs), a potential treatment for MCHS being studied in Dr. Cowan’s lab. Finally, we talk about the future of treatment and how the community can support the efforts of researchers like Dr. Cowan. If you liked this episode, please comment, review, and subscribe to hear more episodes like this one. If you have any questions, concerns, or are interested in being a guest, please reach out to us via Facebook or email.Thank you to all of our listeners for their time!Find us on Facebook: https://www.facebook.com/profile.php?id=61572393046749Email us: [email protected] more about Rare Bird, the organization supporting Dr. Cowan’s research: rare-bird.org

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