Afleveringen
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*Trigger warning* This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution if these affect you.
Follow Champions/External links:
linktr.ee/championsforhd
Website
Follow Shelby:
https://www.shelbylentz.com/
linktr.ee/shelby_lentz
In their discussion about Huntington's disease (HD) and personal experiences, Shelby and Charlotte touch on various topics, including their connection through social media and shared advocacy. They discuss managing anxiety, finding support, and coping mechanisms. The conversation covers HD testing, genetic diagnosis, and its impact on family dynamics. Balancing life choices and finances amidst uncertainty is also explored. They emphasize living in the present, gratitude, and the therapeutic value of music and exercise. Shelby and Charlotte highlight the significance of community, self-care, and supportive partners in navigating life with HD. Additionally, they address challenges like infertility, adoption, and the emotional toll of building a family in the context of HD. Overall, their dialogue underscores the importance of connection, resilience, and shared experiences in facing the complexities of HD.Support the show
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*Trigger warning* This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution if these affect you.
In this conversation, Jenna Woodard shares her experience with Huntington's disease (HD) in her family. She discusses her first memory of HD and how she found out about her own diagnosis. Jenna also talks about the negative testing process she went through and the lack of support and information she received. She shares the challenges of living with a parent who has HD and the difficulties in convincing them to seek help. Lastly, she discusses the importance of sharing personal experiences and dealing with negativity. In this conversation, Shelby and Jenna discuss various topics related to living with Huntington's disease. They talk about dealing with insensitive comments and the importance of not engaging with negativity. They also share their experiences of being open about their condition and the support they have received from the HD community. The conversation touches on the challenges of starting a family when living with HD and the process of applying for in vitro fertilization. They also discuss mental health and coping strategies, emphasizing the importance of finding support and community.
Follow Champions/External links:
linktr.ee/championsforhd
Website
Follow Shelby:
https://www.shelbylentz.com/
linktr.ee/shelby_lentzSupport the show
Support the show
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*Trigger warning* This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
If you are interested in participating or would like to know more about this study, click here: https://www.championsforhd.org/research to schedule a time with Paige or email her at ([email protected])
Spotify Podcast Link: https://open.spotify.com/show/0UsVV0F...
Apple Podcast Link: https://podcasts.apple.com/us/podcast...
Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsfo...
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I sit down Amy Abbott. Amy lost her husband, Jody, to Huntington's Disease. Jody was a musician and had a true love for music. Amy shares the dark moments her and her children had to go through behind the scenes as Jody's HD unfortunately progressed. She is sharing the good, the bad, and the ugly of caregiving. Amy is also our Champion for HD Caregiver for 2022. She was nominated and received the award last year.
I hope you enjoy our conversation!Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Subscribe to Kevin's YouTube Channel:
https://www.youtube.com/user/backonmyishFollow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I sit down Kevin Bailey. Kevin is living with Huntington's Disease and lost his mother to it in a tragic way. Kevin was one of our first donations in 2018 when we became an official 501c3 nonprofit. It was an honor to be able to share his story on our show.
I hope you enjoy our conversation!Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Subscribe to Kevin's YouTube Channel:
https://www.youtube.com/user/backonmyishFollow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I sit down with Sarah and Brandon, a couple who are battling HD. Brandon was diagnosed with HD a few years back. They talk about the highs, the lows, and the importance of a strong foundation and partner in a relationship with HD.
I hope you enjoy our conversation!Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show (https://www.championsforhd.org/donate)
Support the show
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I sit down with Londen and her daughter Autumn to talk about Autumn's life since her diagnosis with Juvenile Huntington's Disease. Before editing, this was a 3 hour conversation! We had so much fun. We laughed, we cried, but most of all they were so open and vulnerable. JHD is an even rarer form of Huntington's--an already incredible rare disease. Any way that they can find to spread awareness: they do. They never stop fighting. Londen and Autumn have an impressive 75,000+ viewers on their joint TikTok account where they speak about life with JHD and work to both educate and reform thought on JHD.
I hope you enjoy our conversation.
Follow Londen and Autumn:https://www.instagram.com/londenandautumn/
https://www.tiktok.com/@londenandautumn?lang=en
Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show (https://www.championsforhd.org/donate)
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Samantha Peterson joins me to share living her life gene positive with Huntington's Disease: the highs and the lows. She shares how she fights everyday not only for herself, but her children. Listen to the episode to hear more about how Samantha is a Champion for HD!
Order Brave Breanna:
https://www.amazon.com/Brave-Breanna-Through-Juvenile-Huntingtons/dp/B099BYQ2FK/ref=sr_1_1?dchild=1&keywords=brave+breanna&qid=1631066574&sr=8-1
Follow Samantha:
https://www.instagram.com/samantha_juliannaa/
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
Support the show (https://www.championsforhd.org/donate)
Support the show
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Order Brave Breanna:
https://www.amazon.com/Brave-Breanna-Through-Juvenile-Huntingtons/dp/B099BYQ2FK/ref=sr_1_1?dchild=1&keywords=brave+breanna&qid=1631066574&sr=8-1
Brave Breanna Dutch:
https://www.huntington.nl/webwinkel/voor-kinderen.html
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Tell Us Your Story: https://www.championsforhd.org/tell-us-your-story
Social Media Ambassador App: https://www.championsforhd.org/social-media-ambassador
Annual Reports: https://www.championsforhd.org/annual-reports
Follow Shelby:https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
Support the show (https://www.championsforhd.org/donate)
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I am joined by Jessica who shares her tramautic childhood living with her mother, who suffered from HD, and how it effects her currently. She also shares her life living gene positive. Listen to Jessica's full episode to hear more about how she is a Champion for HD!
Order Brave Breanna:
https://www.amazon.com/Brave-Breanna-Through-Juvenile-Huntingtons/dp/B099BYQ2FK/ref=sr_1_1?dchild=1&keywords=brave+breanna&qid=1631066574&sr=8-1
Follow Domonique:
https://www.instagram.com/niqueclaire2/
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
Support the show (https://www.championsforhd.org/donate)
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I am joined by Domonique who shares her HD testimony. Her mother battled HD and su*cidal ideations. Domonique has tested positive for the disease and shares her life with a positive diagnosis and the importance of mental health in the HD community.
Order Brave Breanna:
https://www.amazon.com/Brave-Breanna-Through-Juvenile-Huntingtons/dp/B099BYQ2FK/ref=sr_1_1?dchild=1&keywords=brave+breanna&qid=1631066574&sr=8-1
Follow Domonique:
https://www.instagram.com/niqueclaire2/
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
Support the show (https://www.championsforhd.org/donate)
Support the show (https://www.championsforhd.org/donate)
Support the show
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Order Brave Breanna:
https://www.amazon.com/Brave-Breanna-Through-Juvenile-Huntingtons/dp/B099BYQ2FK/ref=sr_1_1?dchild=1&keywords=brave+breanna&qid=1631066574&sr=8-1
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
Support the show (https://www.championsforhd.org/donate)
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I am joined by Kya Rowlins. She shares her journey with HD in her childhood through her mother's battle with the disease, and her life being at-risk.
Listen to Kya's episode to learn more about how she is a Champion for HD!
Follow Kya:https://www.instagram.com/kya90/
Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I sit down with Londen and her daughter Autumn to talk about Autumn's life since her diagnosis with Juvenile Huntington's Disease. Before editing, this was a 3 hour conversation! We had so much fun. We laughed, we cried, but most of all they were so open and vulnerable. JHD is an even rarer form of Huntington's--an already incredible rare disease. Any way that they can find to spread awareness: they do. They never stop fighting. Londen and Autumn have an impressive 75,000+ viewers on their joint TikTok account where they speak about life with JHD and work to both educate and reform thought on JHD.
I hope you enjoy our conversation.
Follow Londen and Autumn:https://www.instagram.com/londenandautumn/
https://www.tiktok.com/@londenandautumn?lang=en
Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show (https://www.championsforhd.org/donate)
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I am joined by one of my dear friends, and fellow Huntington's Disease Advocates, Kyra Ashley Clarke for the second time. She was our first podcast guest, a Champions for HD Ambassador, and our current 2020 Champion for HD. Ashley was inspired to begin her blog #ImNotDrunkLifestyleBlog after her father, who suffers from HD, was mistakenly called out in a crowd by a stranger for being "horribly drunk." Now she uses her blog as an outlet for her own mental health and as a learning tool for those who are misinformed about Huntington's Disease.Follow Ashley:
https://www.facebook.com/imnotdrunkblog/
https://www.imnotdrunklifestyleblog.co.uk/
https://www.instagram.com/imnotdrunklifestyleblog/
Follow Champions:
https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:
https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today we are deep diving into potential benefits of getting tested for Huntington's Disease. This question was left as a comment on our social media post today and it gave me the idea to come on here and talk about what benefits I have found about testing myself. This is personal, please do make sure to seek help from a professional as well. Your genetic counselor and therapist are key resources to lean on before you go through the test results.
Thank you to the woman who left the comment on our post. You inspired this episode! I hope you find this helpful.
Shelby
'Support the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Today I am joined by Evonne. She is 32 years old and living with Huntington’s. She works as the Director of Youth and Childhood Ministries at a Catholic school in Indiana. She is also a Champions for HD 2021 Social Media Ambassador. A year ago, when she moved to Albany, she began to nice the first symptoms of HD. She remembers crying after she fell down the stairs the first time. She is noticing many things that used to be easy to her now feel like a challenge. However, she chooses hope. Her faith in God and her purpose is helping her through her HD.Follow Evonne:
https://www.instagram.com/evonnecorrales/
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show
https://www.championsforhd.org/donateSupport the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Welcome back to the show. I first want to apologize for the delay in episodes. I ended up coming down with COVID a few weeks ago and I had it pretty badly. Thankfully I am feeling much better now, just fighting off severe fatigue, but I hear that can last a while.Today’s guest really hit me in my emotions. Marie and her son Josh have been completely on their own for years now. Marie’s husband suffers from Huntington’s and has been in his later stages for a while now. Unfortunately he has distanced himself and cut off communication between Marie and Josh. Josh recently was diagnosed with Juvenile HD and it has been emotionally, physically, and financially taxing on them.
They live alone and have no outside support from either side of their family. When they reached out to Champions for HD through our help forum, she expressed they were in dire need of financial assistance due to having to live out of a hotel. With the pandemic, the traditional housing resources for these situations are shut down and on hold.
Thanks to your donations, we were able to raise $1,300 for them to help them pay for their entire next month of living expenses.
Despite these difficult circumstances, they both continue to fight. Marie is focused on being the best care giver she can to Josh and their story really hits the soul.
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show
https://www.championsforhd.org/donateSupport the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Megan returns to share her PREGNANCY from IVF! This means her baby will be HD FREE! What a blessing!!
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show
https://www.championsforhd.org/donateSupport the show
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**Trigger warning** This show contains hard topics on life with HD which can including speaking on topics of abuse, neglect, su*cidal ideations and more. Please listen with caution.
Loren joins me to share her father's journey of life before HD, after his initial diagnosis, and current life with him being in a nursing home. Despite the hardship, she continues to hold on to her favorite memories of him while also creating new ones. Her story will definitely make your heart warm.
Follow Loren:
https://www.instagram.com/lorenholifield/
Follow Champions:https://www.championsforhd.org/
https://www.instagram.com/championsforhd/
https://www.facebook.com/championsforhd/
Follow Shelby:https://www.instagram.com/shelby_lentz/
https://www.shelbylentz.com/
https://www.facebook.com/shelbylentzmusic/?ref=bookmarks
Support the show
https://www.championsforhd.org/donateSupport the show
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