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HCandU is a podcast dedicated to the metabolic disorder, homocystinuria. This podcast is meant to be a resource for anyone who has HCU or has been affected by HCU. Topics to be discussed on the show include patient stories, research updates, recipes, and interviews with experts in the field of homocystinuria. Whether you or someone you know were just diagnosed or have been a patient for years, we hope you find this podcast helpful!
- 25 - Episode 25 with Jamela Gutierrez
In the twenty fifth episode of HC&U, we interview Jamela Gutierrez, HCU patient and advocate.
We discuss Jamela's journey with HCU and patient advocacy.
We wrap up with Lindsey’s Low-Pro Bites. We discuss veggie pot pie and rate it on our random fruit or veggie scale! We hope you enjoy!
Please share the podcast and give us a 5 star rating and review!
Check out HCU Network America!
Find Our Low Protein Ideas on Instagram!
HCU Network America on Twitter
Patients and Providers for MNEA
Register for "Ask me anything with Flok" on Monday, 4/22 @ 7 PM ET here!
Everylife Foundation for Rare Diseases
What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know!
#homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u
Thu, 28 Mar 2024 - 30min - 24 - Episode 24 with Liz Carter
In the twenty fourth episode of HC&U, we interview Liz Carter, communications manager of HCU Network America, caregiver advocate, and mother to Elliot who has classical homocystinuria.
We discuss metabolic newborn screening, patient advocacy, and Rare Disease Week.
We wrap up with Lindsey’s Low-Pro Bites. We discuss “healthy tomato basil soup” and rate it on our random fruit or veggie scale! We hope you enjoy!
Please share the podcast and give us a 5 star rating and review!
Check out HCU Network America!
Find Our Low Protein Ideas on Instagram!
HCU Network America on Twitter
Everylife Foundation for Rare Diseases
Rare Disease Legislative Advocates (RDLA)
VMP Genetics- Sign up to become a patient/teacher
What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know!
#homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u
Thu, 29 Feb 2024 - 36min - 23 - Episode 23 with Brittany Parke
In this episode, we speak with Brittany Parke, mom of Grayson, who lives with Homocystinuria, Cobalamin G. We discuss why advocacy and research for Hydroxocobalamin is so important for the cobalamin community.
We also share our low protein recipe of the month in Lindsey's Low Pro Bitessss. It is a veggie stew that is great for the winter months (or anytime really)!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us here!
HCU Network America on Twitter
Check out HCU Network America!
Fri, 26 Jan 2024 - 45min - 22 - Episode 22 with Danae Bartke
In the twenty second episode of HC&U, we continue our interview with Danae!
In this episode, we interview (again) Danae Bartke , an HCU patient and the executive director of HCU Network America. In the second part of our 2 part interview, we discuss the Rare-X data sharing platform. We also announce a new podcast series in collaboration with HCU Network America that debuts in 2024!
We miss Lindsey’s Low-Pro Bites this episode, but it will be back! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
HCU Network America on Twitter
Check out HCU Network America!
Wed, 04 Oct 2023 - 29min - 21 - Episode 21 HC&U Returns
In the twenty first episode of HC&U, we focus on getting our feet back under us as we return from a long hiatus!
In this episode, we interview (again) Danae Bartke , an HCU patient and the executive director of HCU Network America. In the first part of our 2 part interview, we discuss the upcoming ELPF-DD meeting concerning the HCU community.
We miss Lindsey’s Low-Pro Bites this episode, but it will be back! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
HCU Network America on Twitter
Check out HCU Network America!
Sun, 30 Jul 2023 - 19min - 20 - Episode 20 with Ashley Longthorn
In the twentieth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Ashley Longthorn, an HCU patient in the UK. We discuss dealing with HCU and the importance of staying on diet.
We wrap up with Lindsey’s Low-Pro Bites. We discuss million dollar spaghetti and rate it on our random fruit or veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
HCU Network America on Twitter
Check out HCU Network America!
Tue, 12 Oct 2021 - 46min - 19 - Episode 19 with Danae Bartke's Return
In this episode, we interview Danae Bartke, the executive director of HCU Network America. We discuss dealing with HCU and school and navigating the Covid-19 pandemic with HCU.
We wrap up with Lindsey’s Low-Pro Bites. We discuss a fantastic enchilada bake and rate it on our random fruit or veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
HCU Network America on Twitter
Check out HCU Network America!
Sat, 21 Aug 2021 - 1h 07min - 18 - Episode 18 with Dr. Anthony Quinn
In the eighteenth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Dr. Anthony Quinn, the CEO of Aeglea Biotherapeutics. We discuss research and treatments concerning HCU.
We wrap up with Lindsey’s Low-Pro Bites. We discuss loaded cauliflower rice and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Wed, 19 Aug 2020 - 39min - 17 - Episode 17 with Raenette Franco
In the seventeenth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Raenette Franco. We discuss the ins and outs of insurance coverage and HCU.
We wrap up with Lindsey’s Low-Pro Bites. We discuss crispy potato tacos and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Tue, 28 Apr 2020 - 37min - 16 - Episode 16 with Pam Penrose
In the sixteenth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Pam Penrose. We discuss her journey in being diagnosed and dealing with HCU.
We wrap up with Lindsey’s Low-Pro Bites. We discuss vegetarian Zuppe Toscana and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Sun, 22 Mar 2020 - 44min - 15 - HC&U Episode 15
In the fifteenth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Breun and Jeremy Smeltser. We discuss their journey in raising kids who have been diagnosed with HCU.
We wrap up with Lindsey’s Low-Pro Bites. We discuss shredded carrot BBQ and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Thu, 20 Jun 2019 - 51min - 14 - HC&U Episode 14
In the fourteenth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Amber Gibson, recipe coordinator for HCU Network America. We discuss low protein recipes and managing a low protein diet for adults and kids.
We wrap up with Lindsey’s Low-Pro Bites. We discuss eggplant vegetale (insert Ben’s bad Italian accent here)and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Sun, 05 May 2019 - 48min - 13 - HC&U Episode 13
In the thirteenth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Frank Glavin (CEO) and Jeanie Price (Executive Director of Clinical Operations) of Orphan Technologies. We discuss OT-58 and the natural history study.
We wrap up with Lindsey’s Low-Pro Bites. We discuss cauliflower curry and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Sat, 16 Mar 2019 - 31min - 12 - HC&U Episode 12
In the twelfth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Amanda Nethery, an HCU patient, and she shares her journey with HCU.
We wrap up with Lindsey’s Low-Pro Bites. We discuss cauliflower gnocchi and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Tue, 05 Feb 2019 - 41min - 11 - HC&U Episode 11
In the eleventh episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we talk about New Year’s resolutions concerning HCU. We also talk about surgery prep with HCU, and eating at restaurants on a protein budget. Yes, a protein budget. Ben coined that phrase.
We wrap up with Lindsey’s Low-Pro Bites. We discuss cauliflower crust pizza and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Wed, 09 Jan 2019 - 37min - 10 - HC&U Episode 10
In the tenth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we interview Ben’s sister, Breanna (Phil)! She talks about following a low protein diet for a week.
We wrap up with Lindsey’s Low-Pro Bites. We discuss Lindsey’s veggie casserole and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Wed, 05 Dec 2018 - 38min - 9 - HC&U Episode 9
In the ninth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we discuss emergency preparedness, famous vegetarians, and vegetarian Thanksgiving probs!
We wrap up with Lindsey’s Low-Pro Bites. We discuss Lindsey’s veggie casserole and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Wed, 21 Nov 2018 - 44min - 8 - HC&U Episode 8
In the eighth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we continue to discuss HCU Awareness Month! We also have a very special guest, pediatrician, biochemical geneticist, and all around HCU rockstar, Dr. Harvey Levy of Boston Children’s Hospital!
We wrap up with Lindsey’s Low-Pro Bites. We discuss buffalo cauliflower dip and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Inspiration for some of Dr. Levy’s interview questions!
Sun, 28 Oct 2018 - 1h 05min - 7 - HC&U Episode 7
In the seventh episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we discuss HCU Awareness Month! We talk about the timeline of homocystinuria, the calendar of awareness “challenges,” and ALL THE FALL THINGS!
We wrap up with Lindsey’s Low-Pro Bites. We discuss not so chicken pot pie and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Tue, 09 Oct 2018 - 37min - 6 - HC&U Episode 6
In the sixth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we also have a set of three guests! Ben’s parents share what it was like raising a child with HCU. Also, Ben’s sister makes an appearance to save any complaining that may have occurred otherwise.
We wrap up with Lindsey’s Low-Pro Bites. We discuss low protein gyros and rate them on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Please share the podcast and give us a 5 star rating and review!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Tue, 25 Sep 2018 - 43min - 5 - HC&U Episode 5
In the fifth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we also have our third guest, a very dapper fellow who shares his experience with HCU. Hint hint, it’s Ben!Danae Bartke!
We wrap up with Lindsey’s Low-Pro Bites. We discuss zucchini boats and rate them on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Tue, 11 Sep 2018 - 39min - 4 - HC&U Episode 4
In the fourth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!
In this episode, we also have our second guest, Danae Bartke! She discusses experiencing pregnancy while having homocystinuria.
We wrap up with Lindsey’s Low-Pro Bites. We discuss stuffed bell peppers and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Sun, 26 Aug 2018 - 38min - 3 - HC&U Episode 3
In the third episode of HC&U, we discuss the first ever HCU Conference which was held in Westford, Massachusetts. It was called Taking the Lead for HCU, and it was a blast!
In this episode, we also talk about traveling with homocystinuria and provide some tips for managing medication while traveling.
We wrap up with Lindsey’s Low-Pro Bites. We discuss jackfruit “pulled pork” sandwiches and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** We are also asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, we are working on some swag for people who share their good news and are chosen for a shoutout on the podcast!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Sun, 12 Aug 2018 - 31min - 2 - HC&U Episode 2
In the second episode of HC&U, we discuss low protein food providers. These providers include Cambrooke Therapeutics, Taste Connections, PKU Perspectives, Loprofin, Lil’s Dietary Specialty Shop, and Mevalia.
In this episode, we also welcome our first guest, Sarah Chamberlin! We discuss the Medical Nutrition Equity Act with Sarah and tell listeners how to get involved! Visit howmuchphe.org to see unrounded protein content of various food.
We wrap up with Lindsey’s Low-Pro Bites. We discuss Lindsey’s Italian bake and rate it on our random veggie scale! We hope you enjoy!
**FREE SWAG ALERT** We are also asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, we are working on some swag for people who share their good news and are chosen for a shoutout on the podcast!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Check out HCU Network America!
Sun, 29 Jul 2018 - 47min - 1 - HC&U Episode 1
In the pilot episode of HC&U, we give a basic overview of the condition. We talk about the four main systems that HCU can affect, and we also mention some less serious symptoms.
Then we discussed the treatment methods for HCU. We talk about vitamin B6, low protein diets, and cystadane/betain powder.
We wrap up with Lindsey’s Low-Pro Bites. We discuss carrot “notdogs,” and rate them on our random veggie scale! We hope you enjoy!
We are also asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you!
Find Our Low Protein Ideas on Instagram!
Email us at hcupodcast@gmail.com!
Carrot Notdogs Recipe Check out our blog to find the low protein version of the relish!
Check out HCU Network America!
Sun, 15 Jul 2018 - 12min
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