Best Kristina Robinson Podcasts (2024)

1
Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics 42:39

1d ago42:39

42:39

This episode's guests include Dr. Tracey Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: …

1
Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson 19:48

15d ago19:48

19:48

In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their can…

1
50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck 33:03

1M ago33:03

33:03

In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect wi…

1
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC 34:52

1M ago34:52

34:52

In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chroni…

1
S3 Ep. 5 - Dr. Mimi Graham 26:53

2M ago26:53

26:53

Nurturing Well-Being with Kurt Kelly welcomes Dr. Mimi Graham, Director of the Florida State University’s Center for Prevention & Early Intervention Policy, for a discussion about what is affectionately called baby-court in the Florida Dependency Court system. The judges dealing with Child Welfare situations are charged with remarkably difficult de…

1
IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz 18:08

2M ago18:08

18:08

In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: …

1
The MS Poltergeist, feat. Patient Advocate Jennifer Angus 43:48

3M ago43:48

43:48

In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind. Connect with Jennifer Rega…

1
The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale 36:30

3M ago36:30

36:30

In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and avail…

1
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson 27:37

4M ago27:37

27:37

In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since h…

1
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J. 38:13

4M ago38:13

38:13

This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a W…

1
Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation 48:39

5M ago48:39

48:39

In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years after his remission, Tony also started the Tony Foundation, a non-profit that helps to support families impacted by all types of cancers with crucial f…

1
The Unmet Need in Rare Disease, feat. Dr. Emil Kakkis of Ultragenyx 25:12

5M ago25:12

25:12

In this episode, we speak with Dr. Emil Kakkis, a physician and scientist who has spent more than 30 years helping to advance research, treatment and policy for rare disease patients. He is also the founder of both the EveryLife Foundation for Rare Diseases and Ultragenyx, a life sciences company dedicated to developing innovative treatments for ra…

1
S3 Ep. 4 - Dr. Elizabeth Wynter 23:43

6M ago23:43

23:43

In the latest episode of "Nurturing Well-Being with Kurt Kelly," join host Kurt Kelly in a profound conversation with Dr. Elizabeth Wynter. Dr. Wynter, a seasoned expert with years of experience working with foster youth, delves into the insights shared in her new book, "Follow The Love: Permanent Connections Scaffolding." This groundbreaking guide…

1
The Intersection of Motherhood and Chronic Illness, Feat. aHUS Patient Advocate Taylor Coffman 43:28

6M ago43:28

43:28

On this episode of the podcast, we discuss atypical hemolytic-uremic syndrome, also known as aHUS -- a rare disorder characterized by low levels of blood platelets and blood clotting in the small blood vessels of the body. We're joined by Taylor Coffman, whose diagnosis with aHUS during pregnancy inspired her to work as a patient advocate helping t…

1
S3 Ep. 3 - Kristina Rosinsky 26:07

8M ago26:07

26:07

Welcome to the third episode of the FCC's 2023 Conference Series, where host Kurt Kelly engages in a riveting conversation with the esteemed Kristina Rosinsky of Child Trends. Join us as we delve into the profound impact that Child Trends has had on enhancing the well-being of children across the United States. In this episode, Kristina Rosinsky, a…

1
Going All In On Support, feat. Patient Advocates Kathi and Dave Herzog 24:26

8M ago24:26

24:26

In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very f…

1
Learn About NMOSD feat. Patient Advocates Dr. Maggie Kang and Nell Choi 25:27

9M ago25:27

25:27

In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and…

1
Building Equity in the Breast Cancer Community, feat. Jasmine Souers of the Missing Pink Breast Cancer Alliance 24:23

9M ago24:23

24:23

For Breast Cancer Awareness month, in this episode we're speaking with Jasmine Souers, the president and CEO of the Missing Pink Breast Cancer Alliance about some topics that aren't often covered in mainstream oncology. We discuss the individual genotypes, treatment factors and other considerations that make each case of breast cancer a "rare" expe…

1
Von Hippel-Lindau Disease: Meet Patient Advocate Justin Corbin 8:13

10M ago8:13

8:13

Patient Worthy's award-winning podcast is back! In this episode, we discuss Von Hippel-Lindau Disease. That's a genetic condition that causes constant tumor growth, commonly in the eyes, spine, brain and kidneys. Patient advocate Justin Corbin shares his diagnosis and treatment journey, which stretches from the 1990s today. Read more about Justin's…

1
S3 Ep. 2 - Brittney Garrett & Charlette Tarsi 22:52

11M ago22:52

22:52

Welcome to Episode 2 of the FCC's 2023 Conference Series, "Nurturing Well-Being with Kurt Kelly." In this captivating installment, your host Kurt Kelly is joined by two inspiring guests, Brittney Garrett and Charlette Tarsi of PAARI (Police Assisted Addiction and Recovery Initiative). Listen as we delve into the profound impact that PAARI has had o…

1
S3 Ep. 1 - Rep. Felicia Robinson 12:46

11M ago12:46

12:46

In the inaugural episode of the 2023 FCC Conference series, host Kurt Kelly delves into the pressing issues that impact the well-being of children and families with a special guest, Representative Felicia Robinson. Join us as we gain insightful perspectives on upcoming legislation and other critical matters that hold the potential to shape the futu…

1
S2 Ep. 9 - Charles Montorio-Archer 22:05

1+ y ago22:05

22:05

In this episode, we're joined by a very special guest, Charles Montorio-Archer, President and CEO of One Hope United, FCC's Board Chair, and a successful nonprofit entrepreneur, child and family advocate, attorney, and author. We're excited to have Charles on the show today to discuss what it takes for non-profit organizations to be successful and …

1
S2 Ep. 8 - Matt Anderson & Slam Anderson 19:45

1+ y ago19:45

19:45

In this episode of "Nurturing Well-Being with Kurt Kelly" from our 2022 Conference Series, we have two incredible guests who are passionate about empowering and advocating for marginalized communities, particularly children and families. First up is Matt Anderson, a social entrepreneur who is committed to transforming America's foster care system t…

1
How to Support the Supporters, feat. The Courageous Parents Network 28:26

1+ y ago28:26

28:26

We speak to Jennifer and Chrissy from the Couraeous Parents Network, one of Patient Worthy's newest partners. CPN is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Learn more about what they do and how you can get involved over at their websi…

1
S2 Ep. 7 - Teri Saunders 20:23

2y ago20:23

20:23

The Family First Prevention Services Act (FFPSA) is one of the most significant Federal Child Welfare Finance reforms in history. The magnitude of change and the opportunities it presents are significant. Listen to this episode of “Nurturing Well-Being with Kurt Kelly” from our 2022 Conference Series with our FCC FFPSA expert and champion of childr…

1
Working Toward the Future, Feat. GACI Global and Inozyme Pharma 22:18

2y ago22:18

22:18

On today's episode, we sit down with two of the co-founders of GACI Global, a nonprofit organization centered around families affected by Generalized Arterial Calcification of Infancy. We also speak with the Vice President of Physician and Patient Strategies at Inozyme Pharma, which is pursuing novel therapeutics for the treatment of abnormal miner…

1
S2 Ep. 6 - Molly Tierney & Dr. Laura Boyd 24:26

2y ago24:26

24:26

Listen to this episode of “Nurturing Well-Being with Kurt Kelly” from our 2022 Conference Series highlighting a conversation with Molly Tierney and Dr. Laura Boyd. Hear the discussion about the national interest in rethinking foster care in America. Molly Tierney is a Managing Director and the Child Welfare Industry Lead in Accenture’s North Americ…

1
The IRSF: 40 Years of Making Connections 26:46

2y ago26:46

26:46

Thank you for sticking with us while we took an unexpected break! We now return to our regular schedule of helping to share the stories of the rare disease community. In this week's episode, we sit down with Melissa Kennedy and Dominique Pichard of the International Rett Syndrome Foundation (IRSF). To learn more about Rett Syndrome and see how you …

1
The 2022 Living Rare, Living Stronger Patient and Family Forum 18:55

2y ago18:55

18:55

In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world. Learn more about the Patient and Family Forum, taking place June 26 in Cle…

1
Getting the Support You Need, feat. Cancer Commons 16:29

2y ago16:29

16:29

In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique. To learn more about Cancer Commons, visit their website here. You can also conn…

1
S2 Ep. 5 - Greg Hill 16:38

2y ago16:38

16:38

This episode of “Nurturing Well-Being with Kurt Kelly” features Greg Hill, President & CEO of Our Children Have Rights. Listen in as we discuss the importance of children and parental rights, highlighted by Greg’s willingness to share his lived experience with the subject in order to increase community engagement and provide support to Florida fami…

1
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich 20:37

2y ago20:37

20:37

In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com. You can also check out the SAMD9L mutation…

1
S2 Ep. 4 - Chris Lolley 16:09

2+ y ago16:09

16:09

This episode of “Nurturing Well-Being with Kurt Kelly” features Chris Lolley, Executive Director of Prevent Child Abuse Florida, recognizing National Child Abuse Prevention Month. Listen in as we discuss how members of the community can proactively provide support to parents so all of Florida’s children can be happy, healthy, and free from abuse an…

1
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust 18:48

2+ y ago18:48

18:48

In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research. Keep up with the Myrovlytis Trust and their new initiatives here: Myrovlytis Trust www.myrovlytistrust.org LinkedIn: https://www.linkedin.com/company/the-myrovlytis-trust Twitter: @Myrovlytis BHD Foundation www.bhdsyn…

1
S2 Ep. 3 - Matt Anderson & Mariah Thompson-Grissett 38:51

2+ y ago38:51

38:51

Listen to this episode of “Nurturing Well-Being with Kurt Kelly” highlighting a conversation with Matt Anderson and Mariah Thompson-Grissett from the Institute for Family. Hear the discussion about the national effort to increase engagement by youth, children, adults, and parents who have lived experience in the child welfare system. Matt Anderson …

1
Exciting Rare Disease Developments in the EU, feat. HAE Junior 18:54

2+ y ago18:54

18:54

Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the E…

1
S2 Ep. 2 - Rev. Al Williams 19:05

2+ y ago19:05

19:05

Listen to this episode of “Nurturing Well-Being with Kurt Kelly” highlighting a conversation with Reverend Al Williams, Deputy Director of One Church One Child. Hear as Rev. Al discusses his years of service and the importance of nurturing and caring for children in the system by recruiting foster families within the community.--- Support this podc…

1
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases 19:22

2+ y ago19:22

19:22

Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs from February 22 through March 2 and brings together rare patients from across the U.S. to make their voices heard. To learn how you can get involved, visit the EveryLife Foundation website here, and …

1
S2 Ep. 1 - Rep. Michelle Salzman 31:06

2+ y ago31:06

31:06

Dive into Season 2 of Nurturing Well-Being with Kurt Kelly! To kick off the latest season, Kurt sits down with Representative Michelle Salzman to discuss her efforts to increase collaboration between state entities and the community to increase access to mental health services. Rep. Salzman discusses the importance of connecting people with needed …

1
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics 17:48

2+ y ago17:48

17:48

In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current challenges and how his organization is tackling these. Learn more about Achieve Clinics here: www.achieveclinics.com.By Patient Worthy

1
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant 19:05

2+ y ago19:05

19:05

This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting involved in rare disease communities. To learn more about Friedreich's ataxia, visit curefa.org. Listen to Kyle's podcast, Two Disabled Dudes, at twodisableddudes.com.…

1
Ep. 12 - Jarred Vermillion 19:42

2+ y ago19:42

19:42

“Nurturing Wellbeing w/Kurt Kelly” this weeks features Jarred Vermillion of Heroes Initiative speaking about the importance of including youth and parents with lived experience from the child welfare system to create better futures for children and families. --- Support this podcast: https://podcasters.spotify.com/pod/show/fl-children/support…

1
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries 23:37

2+ y ago23:37

23:37

In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma and treatment with CAR T-cell therapy. To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj. Dr. Stacy-Humphries also recommends a private Facebook group for CAR T-cell patients a…

1
Not Just Surviving, But Thriving With Pheo vs. Fabulous 51:36

2+ y ago51:36

51:36

In this episode, we speak with Miranda Edwards, the voice behind Pheo vs. Fabulous about her journey with pheochromocytoma. That's an ultra-rare endocrine tumor that produces adrenaline, characterized by symptoms such as rapid heartbeat and dangerously high blood pressure, among others. Topics discussed: self-advocacy, the importance of awareness, …

1
Ep. 11 - Thea Ramirez 31:06

2+ y ago31:06

31:06

As part of November’s National Adoption, listen to this episode of “Nurturing Well-being w/Kurt Kelly” featuring a conversation with the Founder and CEO of Adoption-Share Thea Ramirez as we honor adoptive families, and celebrate the organizations that help children find permanent homes. For more information on the success of the Family-Match progra…

1
Hanging Onto Hope in the Face of AML 12:30

2+ y ago12:30

12:30

In this episode, we speak with Dave Cade, an acute myeloid leukemia patient who is in remission after an experimental treatment. We discuss keeping hope in the face of a tough diagnosis and the importance of support. Learn more about AML here.By Patient Worthy

1
The Importance of Connection With Jordan‘s Guardian Angels 28:05

3y ago28:05

28:05

In this episode, we discuss an ultra-rare genetic condition with Carole Bakhos of Jordan's Guardian Angels. To find out more about Jordan's Syndrome and how you can support this important nonprofit, check out their website here. Their podcast, "A Rare Reality," is available here or on your favorite podcast platform.…

1
Ep. 10 - John Watson 22:08

3y ago22:08

22:08

This episode of “Nurturing Well-Being with Kurt Kelly” includes a conversation with John Watson, Youth Counsel Specialist with Selfless Love Foundation. Listen as John discusses “Foster Youth Voice Month” which runs from October 4th - November 4th. This month focuses on foster youths by celebrating the accomplishments and success stories of youths …

1
Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor 18:58

3y ago18:58

18:58

In this episode, we discuss narcolepsy and the results of a recent clinical trial investigating FT218 for efficacy in treating excessive daytime sleepiness and cataplexy. Dr. Asim Roy, the medical director of the Ohio Sleep Medicine Institute and a lead investigator in the REST-ON study, joins us. To learn more about FT218 and the clinical trials, …

1
A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association 25:46

3y ago25:46

25:46

In this episode, we discuss a condition called periodic paralysis with Dr. Steve Cannon, professor and chairman of the department of physiology at the David Geffen School of Medicine at UCLA and medical advisor with the Periodic Paralysis Association. Periodic Paralysis is a rare genetic disorder that is characterized by attacks of paralysis, weakn…

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Kristina Robinson Podcasts

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