Best Leukodystrophy Podcasts (2024)

1
S3 E1 - The Power of an Answer: Leukodystrophy with Dr. Lydia Green 46:34

4d ago46:34

46:34

On the first episode of season 3, our host Helen Bethell talks to Dr Lydia Green, a leading expert in the field of Leukodystrophies, or Inherited White Matter Disorders (IWMD) which affect the transmission of nervous impulses throughout the body, negatively impacting patients’ development, communication, cognitive and motor skills. Lydia tells us a…

1
The Hunter's Hope Sibling Session (PART 2) 20:46

1h ago20:46

20:46

During this year's Hunter's Hope Family Symposium we had two amazing conversations with some of the siblings of children affected by Krabbe Disease and other Leukodystrophies. Last week we introduced you to 6 of our siblings and this week we are introducing you to 6 more! Two (Michael and Elijah) of which have Krabbe disease and received life savin…

1
The Hunter's Hope Sibling Session (PART 1) 35:23

2d ago35:23

35:23

During this year's Hunter's Hope Family Symposium we had an amazing conversation with some of the siblings of children affected by Krabbe Disease and other Leukodystrophies. This conversation we had felt like a family reunion... Friends, brothers and sisters talking about life... The joy and the pain. The fear and faith. Life and grief. And so much…

1
Faith & Football with Steve Tasker! 55:34

17d ago55:34

55:34

WELCOME BACK TO THE NFL FOOTBALL SEASON!!! If you know us, we share a lot about faith on this podcast, but we love football…especially the Buffalo Bills! To kick off the 2024 Buffalo Bills Season we wanted to bring in someone who was not only an amazing player on the field, but an even more incredible man off the field… STEVE TASKER! We had so much…

1
Walking Through Heartbreak & Loss... Again. 55:19

22d ago55:19

55:19

This is by far one of the hardest episodes we’ve ever recorded. A little over a month ago, my amazing father-in-law, Greg Bean, suddenly took his last breath here on earth and his first in heaven. I asked my husband, Parker, if he would be willing to share how he is processing the devastating loss of his dad. Although this is a very difficult episo…

1
A Conversation with Cam - Identity, Social Media, and So Much More! 41:29

1M ago41:29

41:29

Cam is back by popular demand! We love having her on the podcast! In today's special conversation with Cam we went back to the archives and pulled out our “Hot Chocolate with God” book series. If you're not familiar with HCWG, the three of us wrote a series of five books when Cam and I were very young. These books and devotionals are filled with fu…

1
Hunter - The Boy Whose Unspoken Love Changed Everything 41:15

2M ago41:15

41:15

Hunter James Kelly- The boy who never spoke a word, but changed everything… Monday, August 5, 2024 marked 19 years since Hunter went to heaven. It seems like so long ago, and yet there are moments when it feels like it was just yesterday that he was here. In this week’s episode, Hunter’s younger sister, Camryn, joins Erin and Jill to talk about Hun…

1
My Story of Perseverance - Jim Kelly (PART 2) 24:34

2M ago24:34

24:34

“We couldn’t fit all of my story into one episode so this week we are sharing PART 2! I talk about the day my son, Hunter, went to heaven, how God rescued and restored my marriage, and my 4 cancer battles. My story has been hard, but God is good. He has brought me and my family through so much. My story isn’t over and neither is yours. I hope you a…

1
My Story of Perseverance - Jim Kelly (PART 1) 57:54

2M ago57:54

57:54

"I travel the country sharing my story of perseverance...But never quite like this. I talk about my life growing up in the small town of East Brady, Pennsylvania, my college years playing football at the University of Miami, being drafted by the Buffalo Bills, and yes...the 4 Super Bowl losses. I also talk about my wife, Jill, and my three children…

1
S2 E6 - Bringing Genomics into Mainstream Nursing 27:07

2M ago27:07

27:07

On the final episode of Season 2 of The Road to Genome, Helen speaks to Karen Westaway, Lynch Syndrome Project Manager for the West Yorkshire & Harrogate Cancer Alliance. Karen tells us about her journey into Nursing, her amazing work as one of the Lynch Syndrome Nurse Educators with the NEY GMS, and where she is now.…

1
My Story... Unfiltered - Erin Kelly Bean 1:08:53

2M ago1:08:53

1:08:53

"I used to be afraid to tell my story. I thought I couldn’t share what I’ve walked through until I was on the other side. Until the pain ended. Until the depression lifted. Until I no longer had panic attacks. Until I stopped doubting God. Until I was completely healed. But… I’ve found strength in sharing my story in the midst of it…in the midst of…

1
My story in a way I've never shared before - Jill Kelly 1:01:59

3M ago1:01:59

1:01:59

What do you do when everything you put your hope in fails... "I spent years of my life putting my hope in the things of this world, until nothing this world had to offer could save my son, Hunter. But it was in that moment of desperation, when I lost all hope, that God intervened and changed everything. He made a way where there seemed to be no way…

1
S2 E5 - Following the Genomics Dream, with Nurse Director Gill Moss. 28:07

3M ago28:07

28:07

On this episode of The Road to Genome, Helen chats to Gill Moss, Nurse Director for the North East & Yorkshire Genomic Medicine Service. Some of Gill's earliest memories are of her desire for nursing, and as she says herself, Gill has "quite literally followed her dream". Gill works to embed genomics into nursing & midwifery pathways, and raise awa…

1
Introducing The Immeasurably More Podcast! 22:47

3M ago22:47

22:47

THE IMMEASURABLY MORE PODCAST! We’re so excited to announce the rebrand of The Light Your Heart With Hope Podcast! In this week’s episode we share why we decided to change the name, what this means moving forward, and so much more…immeasurably more! Thank you for listening and being a part of our podcast family. We love you! “Now to him who is able…

1
Keep Going (Part 2) 36:49

3M ago36:49

36:49

There was SO much to talk about last week that we needed a PART 2! So this week we are continuing the conversation - How do you keep going when you want to give up? One of the main takeaways of part 1 was that in order to Keep Going you have to rest in and trust in the PRESENCE of God, the POWER of God, the PROVISION of God, and the PROMISES of God…

1
S2 E4 - The Accidental Geneticist - The Journey of Paul Roberts, Lead Solid Cancer Scientist 32:49

3M ago32:49

32:49

On this episode of The Road to Genome, Helen uncovers the twists and turns of Paul Roberts' journey into genomics. From a planned career of teaching, to becoming the Lead Solid Cancer Scientist for the NEY GMS, Paul's route into genomics is, like many, full of twists and turns!By North East & Yorkshire Genomic Medicine Service

1
Keep Going (Part 1) 27:22

3M ago27:22

27:22

No matter what your circumstances are, no matter how much you want to give up because that seems like the easier choice, keep going. Nothing is impossible with God! This week we're talking about what we've learned in the midst of our darkest moments and deepest heartbreak. We will be sharing what has helped us to persevere, no matter what. You will…

1
Highlights & Takeaways from Mental Health Awareness Month! 38:35

4M ago38:35

38:35

We covered a lot of ground during Mental Health Awareness Month. From climbing out of the pit and how to help someone struggling with anxiety and depression, to overcoming the fear of falling back into the darkness. We talked about so much, and although we hope you take time to listen to all of the episodes, we realize that you might not have the t…

1
S2 E3 - The Genomics of Haemato-Oncology with Polly Talley 28:20

4M ago28:20

28:20

On this episode of The Road to Genome, Helen is joined by Polly Talley, the Haemato-Oncology (HaemOnc) Lead Scientist for the NEY Genomic Laboratory Hub, and Senior Scientific Advisor for HaemOnc with the NHS England Genomics Unit. Polly tells us about her journey into the world of genomics and how her career has developed, and continues to develop…

1
Your story isn't over... (MHAM - Episode 5) 32:16

4M ago32:16

32:16

We've come to the end of Mental Health Awareness Month 2024! And what a month it has been! We've talked about so many amazing topics. Topics that are hard to talk about but vital to healing and restoration. Topics that we hope to continue talking about in the future. We hope you have been encouraged and inspired to make your metal health a priority…

1
How to overcome the fear of falling back into depression & anxiety (MHAM - Episode 4) 40:11

4M ago40:11

40:11

When you've come out of a dark season of depression and anxiety you can't bear the thought of falling back into the darkness again. It's terrifying to even think about. Maybe you've experienced breakthrough but you're worried you'll be broken again. Maybe light has finally burst through but you're afraid darkness is around the corner. So how do we …

1
S2 E2 - A Nurse's Journey into Precision Medicine 20:50

4M ago20:50

20:50

On this episode of The Road to Genome, Helen chats to our Genomic Lead Nurse, Kay Cawthron, about her journey into genomics and her current work with the North East & Yorkshire Genomic Medicine Service. From a young age, Kay was inspired by nursing, and providing care to those who need it most. Join us to hear how Kay rose to her current position a…

1
Climbing out of the lows of depression & anxiety - (MHAM - Episode 3) 47:00

4M ago47:00

47:00

When you're struggling in the midst of a season of depression and anxiety, it feels like the pit of darkness will consume you. It can seem like there's no way out. It feels like light will never return. But... there's hope! There's always hope! You will not stay in the lows of depression forever. You will come through the dark valley you're in. But…

1
How to help someone struggling with depression & anxiety (MHAM - Episode 2) 34:36

5M ago34:36

34:36

Whether you're struggling with depression and anxiety or you're currently walking alongside someone who is, this episode is for you. We know how hard it is to struggle with mental health and also how difficult it is to walk alongside someone you love who is struggling. This week we're talking about how to help someone who is struggling with depress…

1
S2 E1 - The DNA of Midwifery: Genomics and Midwifery Practice 28:31

5M ago28:31

28:31

Celebrating 'International Day of the Midwife' on Sunday 5th May, our first episode of The Road to Genome season 2 features an interview with Lead Midwife for the North East & Yorkshire Genomic Medicine Service, Denise Barnes. Denise talks to us about the role of the midwife, and how genomics influences the care and treatment options of pregnant pe…

1
Mental Health Awareness Month 2024 - A recap of our mental health journey & evidence of healing 44:39

5M ago44:39

44:39

May is Mental Health Awareness Month!! We will be spending this entire month talking about all things mental health. The truth is, we couldn't authentically talk about this topic unless we had walked through our own seasons of pain and struggle in our mental health. And because of that, we are passionate about raising awareness and bringing hope to…

1
Conversations with Erin & Jill - I'm struggling to forgive someone who hurt me. Can you give advice on forgiveness? 43:55

5M ago43:55

43:55

Are you struggling to forgive someone? Are you struggling to forgive yourself? Forgiveness is hard. But living with unforgiveness is harder. A lot harder. One of our listeners shared that they were struggling to forgive someone who hurt them. We know the struggle to forgive. Especially when the pain is still present. Or the person who hurt you isn'…

1
Conversations with Erin & Jill - How can I help people see that I'm not the person I used to be? 42:52

5M ago42:52

42:52

"I used to be a different person and had a bad reputation. But I've changed and I wish people knew." One of our listeners shared this with us and it's such an important topic. The reality is, no matter what your past looks like, we all have a story that God can, and will redeem. He is able to do the impossible. He is able to do immeasurably more th…

1
Conversations with Erin & Jill - What do you do when you feel stuck? 29:31

5M ago29:31

29:31

Have you ever felt stuck? Stuck in a circumstance? Stuck in a relationship? Stuck in your job? Stuck in shame? Stuck in your past? Just stuck in life, period!? You're not alone. In today's episode, we're talking about feeling stuck and what you can do about it! You may feel stuck right now... but you won't be stuck forever! Shop HH x MH Collection …

1
S1 E5 - Genes, Guidance, and the Role of the Genetic Counsellor 33:46

6M ago33:46

33:46

In the last episode of our first series, your host Helen Bethell is in conversation with…… herself! For one episode only, Helen turns the tables and hands the mic to Jack Darling, to interview the interviewer! As a Genetic Counsellor, Helen is quizzed from the patient perspective, shares the twists and turns of her own fascinating career in educati…

1
Conversations with Erin & Jill - How do you trust that your life has purpose? (PART 2) 28:16

6M ago28:16

28:16

What defines your purpose? Who defines your purpose? In last week's episode, we talked about how to trust that your life has purpose. We were so encouraged and there was so much more that we wanted to share, which is why we needed a PART 2! Words to Remember: "We are not born to find our purpose. We were born with a purpose." - Jill "God would not …

1
S1 E4 - Decoding Lynch syndrome, with Professor Sir John Burn 32:11

6M ago32:11

32:11

This week, Helen completes her interview with Professor Sir John Burn, focusing on his ground-breaking research and discoveries in the specialist field of Lynch Syndrome - one of the more common causes of inherited cancer, including bowel cancer and endometrial cancer. He also talks about the trials he has led over many years demonstrating the impo…

1
Conversations with Erin & Jill - How do you trust that your life has purpose? (PART 1) 24:21

6M ago24:21

24:21

We all ask the question. We all want the answer. What's my purpose? Why was I created? It's a question we all ask. It's a question that has an answer. We have so much to share about this topic that we decided to do two episodes. Listen next week for Part 2! We hope and pray you are encouraged! Your life has purpose! Words to Remember: "You automati…

1
S1 E3 - Genomic Pioneers: In Conversation with Professor Sir John Burn 35:18

6M ago35:18

35:18

This week, your host Helen Bethell is in conversation with Professor Sir John Burn, who perhaps needs little introduction. Sir John is a colossus in the field of genomic medicine and research, and he reflects on his incredible medical and academic career to date. Tracking his fascinating journey from growing up in a pit village in County Durham thr…

1
Special Conversation with Cam Kelly - How do you navigate being single? 48:42

6M ago48:42

48:42

When asked what was on your heart, one of our listeners said, "I'm struggling with being single when all of my friends and siblings are married." Can you relate? Have you been looking for love? Are you longing to be in a relationship? Is it hard to be single? Cam is home from school for spring break so we asked her to join us to weigh in on this to…

1
S1 E2 - How Genomics Supports the Patient Journey 20:14

6M ago20:14

20:14

This week, Helen is in conversation with Consultant Clinical Geneticist, Dr Jackie Cook, who, during her 30 years or so in genomics, has seen it all, from small beginnings when genetic testing was very limited, through to the mapping of the first human genome and all the innovative advances in genomic medicine that followed, and the impact these ha…

1
Conversations with Erin & Jill - How do you have hope when it seems like one bad thing after another keeps happening? 29:43

6M ago29:43

29:43

Are you wondering when the next bad, painful thing is going to happen? Are you waiting for the next shoe to drop? When you've experienced deep heartbreak, loss, trauma, or hardship it can be easy to wonder when the next bad thing is going to happen. We've been there. We understand the fear. We know how hopeless it can feel to be in that place. Toda…

1
S1 E1 - A Patient's Journey Through Genetic Testing 33:23

6M ago33:23

33:23

This week host Helen Bethell is in conversation with patient, Jack Darling who works in the communications team with the NEY GMS. But he's also a patient with a rare genetic heart condition. In this episode, Jack openly shares his own emotional journey - from undergoing genetic testing as a teenager, through to receiving his diagnosis and treatment…

1
Conversations with Erin & Jill - How do you deal with deep heartbreak & loss? 42:28

7M ago42:28

42:28

At some point in our lives, we all go through heartbreak and loss. It's the most difficult, painful experience to navigate. How do you deal with it? Is it possible to have joy in the midst of heartbreak? Is it possible to still have hope after loss? In this week's episode, we share our experience with heartbreak and loss, and what we've learned as …

1
Conversations with Erin & Jill - How can I hear from God? He seems so far away. 26:56

7M ago26:56

26:56

Have you ever prayed over and over again about something and felt like God was distant, maybe even non-existent? Have you been in a relationship with God for a long time and lately it seems like He is no where to be found? Are you overwhelmed by what's going on in your life and no matter how much you've prayed God seems silent? It's as if He doesn'…

1
Conversations with Erin & Jill - How do you stay close to God in a culture that tries to push Him out of everything? 30:14

7M ago30:14

30:14

In the fast paced, highly advanced, materialistic, chaotic culture we live in, it's easy to get distracted. On any given day we're all inundated with information pulling us in a thousand different directions. Pulling us away from what matters most - our relationships and more specifically our relationship with God. In today's episode, we talk about…

1
The Greatest of These is LOVE... 26:51

7M ago26:51

26:51

Love is the point... Of everything. We were created and called to love God and love others. On Valentine's Day, a day that is supposed to represent "love," we decided to talk about God's love and why it's the most important and powerful gift you'll ever receive. Once you know His love, you can't help but love others... including your enemies. And l…

1
Special Episode with Cam Kelly! 38:04

8M ago38:04

38:04

With Cam home from college for a few days we decided to invite her to join us on the podcast. This is a fun, light-hearted conversation where we talk about a few things we love - faith, family, football, and fashion! This episode is a reminder to appreciate and spend time with the people you love... the people God has placed in your life. Cam is an…

1
Conversations with Erin & Jill - How do you know what you're created to do? 26:51

8M ago26:51

26:51

This episode is based on three very important questions we received... 1. How do you deal with being anxious about the future? 2. How do you know what God's will is for your life? 3. How do I know what God created me to do? At some point in everyone's life these questions have been asked. In this episode we share what we've learned and what God say…

1
Conversations with Erin & Jill - How do you trust God with having expectations of people you love when your feelings are hurt? 22:57

8M ago22:57

22:57

Expectations... We all have them... Of others. Of ourselves. Of God. It's hard to have expectations and it can be even harder to try and meet the expectations of others. But the hardest part... trusting God with the expectations of the people you love. But there's a way to navigate all of this in a way that brings freedom. We're talking about it to…

1
Conversations with Erin & Jill - What to say & what not to say to someone struggling with depression & anxiety 53:33

8M ago53:33

53:33

Because of the overwhelming response we received and all of your questions, we decided to continue the Conversations with Erin and Jill! So many people reached out to us about mental health. In today's episode, we talk about what to say and what not to say to someone who is struggling with depression and anxiety. We've both struggled with depressio…

1
100th EPISODE!!! 51:12

9M ago51:12

51:12

Welcome to 100th Episode! It's hard to imagine that we have recorded 100 episodes for the Light Your Heart with Hope podcast. To make this episode even more special and memorable we decided to record with our entire family. We talk about faith, family, and of course... football. THANK YOU SO MUCH for listening and being a part of this incredible jo…

1
A Recap & A New Year 11:33

9M ago11:33

11:33

We are so thankful for all that God did through this podcast in 2023 and we can't wait for all that's in store for 2024! In today's episode, Erin does a quick recap of her favorite quotes and verses that were shared in episodes over the last year - truths that apply to every day of every year! Then Erin gives a glimpse into what God walked her thro…

1
Conversations with Erin & Jill - What's the point? 23:03

9M ago23:03

23:03

The most asked question to close out 2023! What's the point? Most of us have asked this question at least once. What's the point? Of everything... It's easy to lose sight of the point when you're focused on the pain. But what if the point of everything, including the pain, was to point to a Person? What if the point was the Person of Jesus? Would i…

1
Conversations with Erin & Jill - How do you still have faith after everything that has happened to you? 26:54

9M ago26:54

26:54

Sometimes it's hard to have faith. When things don't go the way you hoped and prayed they would... When life doesn't make sense... When everything feels like it's falling apart and out of control... When you're hurting and heartbroken and pain is more prevalent than joy... In this week's episode, Erin and Jill talk about how they've clung to their …

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