Jen Stansbury Koenig - HSCT Warriors Podcast

03/28/19 • 36 min

Welcome to another episode of Causepods! Today on the show we’re joined by Dr. Jen Stansbury Koenig, creator of HSCT Warriors Podcast, who is going to be defining for us what exactly autoimmune disease is and the role that hematopoietic stem cell transplants (HSCT) can play in the healing process. She discusses her own experience of being diagnosed with two serious illnesses, how she approached treatment and what it was that made her decide to start a podcast to advocate the cause for HSCT.

Jen talks about the strong case for this treatment, giving us statistics from clinical trials and shares some of the issues related to the drugs that are frequently prescribed for people suffering from autoimmune disease. We discuss the possible obstacles for patients wanting to receive HSCT treatment, including the resistance from the medical field and the reluctance of some insurance companies to cover the expenses. She also tells us more about her show and the people she typically interviews as well as the importance of having consistent support in championing a cause like this. If you want to find out more about this really interesting and potentially life-saving treatment, do not miss out on today’s show!

Please support Jen in anyway you can directly (non tax-exempt)

Link to Podcast:
https://hsctwarriorspodcast.com/
https://itunes.apple.com/us/podcast/hsct-warriors/id1418589301?mt=2
https://soundcloud.com/hsctwarriors-podcast
https://www.youtube.com/channel/UCrHJky5Oj_CyMAGrAzPj4zg/videos?view_as=subscriber

Social Media:
https://www.facebook.com/HSCTWarriorsPodcast/
https://www.instagram.com/hsctwarriorspodcast/

Key Topics:

• What HSCT stands for and what it is. (01:43)
• How autoimmune disease affects the body. (02:53)
• When Jen was diagnosed with multiple sclerosis and later on, lime disease. (05:03)
• The motivation behind starting the HSCT Warrior Podcast. (07:55)
• Dr. Bert’s clinical trials that prove the success of HSCT. (08:31)
• The issues with using drugs to treat autoimmune disease. (10:25)
• More about how stem cells function. (12:50)
• The need for a hematologist, not only a neurologist. (18:06)
• Why it might not be so easy to get HSCT treatment. (20:52)
• What to do to get HSCT into your treatment plan. (22:38)
• Some numbers on the prevalence of autoimmune disease. (24:30)
• Why Jen decided on using podcasting as the platform for advocating HSCT. (25:46)
• What the first season of her podcast focused on. (26:52)
• Other people she typically interviews on the podcast. (27:29)

See the show notes and a transcript at http://www.causepods.org/podcast/hsct-warriors

Thanks for Listening!

Please support Jen in anyway you can directly (non tax-exempt)

Social Media:
https://www.facebook.com/HSCTWarriorsPodcast/
https://www.instagram.com/hsctwarriorspodcast/

Key Topics:

See the show notes and a transcript at http://www.causepods.org/podcast/hsct-warriors

Thanks for Listening!

Previous Episode

Chris Lanphear - NoCo FM (EP.17)

Welcome back to Causepods everybody! Today our guest is Chris Lanphear, the founder and brains behind NoCo FM, a network of radio and podcast shows with a focus on inclusivity, diversity, and causes that need a voice. With a longish career in radio and media, Chris slipped nicely into the world of cause based radio and podcasting when the opportunity arose. They started with just one show and have quickly grown to a wide ranging and interesting roster of hosts and topics. Like many others on this show, Chris sees the unique quality that podcast offer as a great way to tell stories and connect audiences and information.

Our conversation covers Chris and his colleagues’ motivation, how they go about selecting content, finding hosts and the mission statement that he likes to keep in mind. We also chat about the character and strengths of audio for storytelling before getting into some of the lessons that Chris has learned in his current position. He gives us some information on the shows that are currently airing, focusing on a podcast not too different from Causepods called Connecting a Better World. Chris is kind enough to share his advice for newbies and also fills us in on a cause that is near and dear to his heart. For all this and a whole lot more, join us today!

Key Topics:

The impetus behind launching NoCo FM. (01:26)
Finding hosts and the homegrown approach that Chris takes to shows. (02:21)
The overarching mission for the network. (03:10)
Audio’s strengths in the storytelling realm. (05:52)
The current status and ultimate goal of the project. (07:03)
Interesting lessons that Chris has learned running a podcast network.(09:04)
Cross promotion and advertising for other shows across the network. (13:07)
A little bit about the Connecting a Better World podcast.(15:27)
Diversity in listenership for NoCo. (18:03)
Advice from Chris to those new to the podcasting game. (19:44)
Chris’ chosen cause that he has chosen to support and why. (22:40)
And much more!

Support Suicide Prevention of Larimer County

See the show notes and a transcript at https://www.causepods.org/podcast/chris-lanphear

Thanks for Listening!

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Thanks for Listening!

Next Episode

The Uphill Battle of Batten Disease

Sebastian Velona is a happy kid. He is tough and resilient in the face of adversity, something many kids his age struggle to embody. Sebastian has it especially tough, however. He was diagnosed at a young age with the CLN8 variant of Batten Disease, a rare genetic condition that causes seizures, blindness, and cognitive decline.

After Sebastian received the diagnosis, his father, Christopher, did what any caring parent would do: he exhausted all avenues in search of treatment options, and when he didn’t find what he was looking for, he spearheaded his own movement to fundraise for the development and research of groundbreaking new ways to treat the disease.

The creation of Project Sebastian has lead Christopher to knock on the doors of senators, create The Project Sebastian Podcast, and most importantly, generate a caring community for those living with Batten Disease and their families.

The number of people living with Batten Disease today is inconclusive, as is the prospect for a cure. However, that does not stop Christopher, but rather fuels his mission to find one.

In this episode Christopher discusses how his son’s disease was the catalyst to go above and beyond, finding his own answers when he was told there were none. He ruminates on the ways that creating a podcast as a part of his mission to help his son has in fact helped him to overcome his own fears, and opened their family to a greater community that holds the same goal close to their hearts. Above all, Christopher emphasizes the value of awareness – that in the face of a seemingly bleak diagnosis, sharing his family’s story has been the greatest asset in making progress towards finding a cure.

Key Topics