(Part 2) Kate Kobbermann - Kobbermann Syndrome

This week is the conclusion of the two-part interview with Kate Kobbermann. Bill and Kate discuss the severe pain associated with Kobbermann Syndrome and the extreme lengths she has gone to in an attempt find a remedy for her pain, including moving her life across the country and spending thousands of dollars on medical cannabis.

About Kobbermann Syndrome:

Based on Kate's experiences, her syndrome has been classified as one that causes skeletal fragility, which is potentially caused by a unique strand of DNA.

Kate Kobbermann - Kobbermann Syndrome

Imagine having a condition so rare that the top specialists are unable to diagnose you. In fact, after further research, they explain they need to name your condition after you. This is the story of Kate Kobbermann and her remarkable life with Kobbermann Syndrome.

This episode is Part 1 of a 2 episode podcast. In this episode, Kate and her mother discuss the timeline of her life beginning with her birth and ending with the diagnosis of Kobbermann Syndrome

About Kobbermann Syndrome:
Based on Kate's experiences, her syndrome has been classified as one that causes skeletal fragility, which is potentially caused by a unique strand of DNA.  

The Batman of San Antonio - Helping Sick Children

For the better portion of the past decade, The Batman of San Antonio has been helping sick children in the San Antonio, TX area regain the strength to continue fighting their ailments. What began with a tragic accident has evolved into a lifelong passion. This is the wild, shocking, sad and uplifting story of San Antonio’s Caped Crusader.

Erin Merryn - Erin's Law

In the first-ever listener requested episode, Bill welcomes Erin Merryn, childhood sexual abuse survivor turned author, speaker, child advocate and activist. Erin Merryn is the founder and president of Erin’s Law,  a law that has been credited for preventing dozens of child predators from harming countless children throughout the United States. Erin has been featured on The Oprah Winfrey Show, ABC Nightline, TODAY Show, TLC, and CNN, as well as many other popular programs and publications. 

About Erin's Law:
The first U.S. child sexual abuse prevention education law requiring children be educated in school about identifying sexual abuse.  Thus far, the law has been passed in 31 states with 17 additional states preparing to vote on the bill in 2017 or 2018. 

Judith Newman - To Siri With Love

Judith Newman, author of the acclaimed book, To Siri With Love, joins Bill to discuss the inspiration for her latest book, her son Gus. Gus, who has Autism, developed a relationship with Siri, Apple’s automated assistant, who helped enhanced his communication skills and allowed him to strengthen his relationships with his family and the people around him.

Judith also discusses her life and how she balances a successful writing career with being a mother.

About To Siri With Love:
To Siri with Love is a collection of funny, poignant, and uplifting stories about living with an extraordinary child who has helped a parent see and experience the world differently. From the charming (Gus weeping with sympathy over the buses that would lie unused while the bus drivers were on strike) to the painful (paying $22,000 for a behaviorist in Manhattan to teach Gus to use a urinal) to the humorous (Gus’s insistence on getting naked during all meals, whether at home or not, because he does not want to get his clothes dirty) to the profound (how an automated "assistant" helped a boy learn how to communicate with the rest of the world), the stories in To Siri with Love open our eyes to the magic and challenges of a life beyond the ordinary.

Jonny Imerman - Imerman Angels (Cancer Support)

After beating cancer, Jonny Imerman realized there needed to be a network for cancer fighters to connect with cancer survivors, so he founded Imerman Angels. Jonny and Bill discuss the creation of Imerman Angels, the speed in which the foundation has grown, and then Jonny provides current cancer fighters with a word of advice.

About Imerman Angels:
Imerman Angels provides free, personalized, one-on-one cancer support for cancer fighters, survivors and caregivers across the globe. To learn more, visit imermanangels.org.

Julie & Cheryl Gistenson - Blindness

Two sisters. Same condition. Both blind.
Both Julie and Cheryl Gistenson lost their vision due to Axenfeld-Rieger Syndrome. The sisters discuss growing up as one another's supports and what they learned from their father, who is also blind. Bill and the sisters then play a game called "Ask A Blind Person" in which Bill asks questions about blindness that sighted individuals may feel too uncomfortable to ask.

About Axenfeld-Rieger Syndrome (ARS):

ARS is a condition that causes abnormalities within the eye, particularly in the frontal region near the pupil. Individuals impacted by ARS tend to develop Glaucoma, a condition that creates pressure and subsequent pain behind the eye.

Stacey Skrysak - Triple Heart Foundation

In 2013, after undergoing months of fertility treatment, Stacey Skrysak’s three children, Peyton, Parker and Abby, were born prematurely. Tragically, both Parker and Abby passed away in the hospital. After returning home with their surviving triplet, Stacey and her husband, Ryan, created the Triple Heart Foundation to honor the memory of Abby and Parker.

Bill and Stacey discuss her journey with infertility treatment, the day she delivered her children and the families Triple Heart Foundation has touched since its inception.

About Triple Heart Foundation:
Triple Heart Foundations sends care packages and books to families in Nicu nurseries who find themselves in a similar situation as Stacey and Ryan. The hope is to provide not only support, but books for parents to read to their children.

Natalie Hayden - Crohn's Disease

Natalie was diagnosed with Crohn’s Disease in July 2005. After several hospitalizations, countless medications and flare ups she underwent her first surgery in August 2015.  Since recovering from the surgery,  Natalie has become an advocate for Crohn's patients via her blog, Lights, Camera, Crohn's: An Unobstructed View, where she provides readers with weekly insight about what life is like living with a chronic, invisible disease.

About Crohn's Disease:

Crohn's Disease is a category of Inflammatory Bowel Disease (IBD). Individuals with the condition experience chronic inflammation of their gastrointestinal tract, which results in abdominal pain,  fever, and loss of appetite, among many other life-altering symptoms.

Janey Lowes - WECare Worldwide

In 2014, after backpacking in Sri Lanka, Janey Lowes learned of a large population of dogs living in poor health and under terrible conditions on the island. Being a trained veterinarian, she returned home to the United Kingdom, where she formed the nonprofit organization, WECare Worldwide. She returned to the island shortly thereafter and has made it her life’s mission to care for the dogs in Sri Lanka.

About WECare Worldwide:

WECare Worldwide is an organization that provides free veterinary care to animals in need worldwide. Ultimately, WECare Worldwide plans to extend veterinary services around the globe but, right now, they are concentrating on tackling the issues with the street dog population in Sri Lanka. It is estimated that there are up to 3 million street dogs in Sri Lanka. WECare Worldwide is in the process of carrying out a 5 year plan, in which they will look to help eliminate rabies in the country and also humanely reduce the number of unwanted street dogs.

Jay Austin - Minimalism

This week's guest is Jay Austin. Bill and Jay discuss the Minimalist lifestyle, how he purged much of what he owned, moved into a tiny house and how he is now living off the grid for the next several years! Jay is currently biking around the world with his girlfriend as he strives to achieve a life of Minimalism and happiness.

About Minimalism:
Minimalism is a lifestyle in which an individual removes unnecessary items from their life in an attempt to better themselves and focus on what truly matters to them.

Erin Gianaras - 27 Year-Old Stroke Survivor

Bill sits down with Erin Gianaras, who at age twenty-seven suffered a life-altering stroke while running errands on a hot summer day. Erin shares intimate details of that day and how she spent the past year recovering and rebuilding her life.

About Strokes:

A stroke can happen to anyone at any age. A stroke occurs when blood flow to any part of the brain is cut off. Each year,  nearly 800,000 people experience a new or reoccurring stroke, making strokes the fifth leading cause of death and the leading cause of disability in the United States. 

Megan King - Ehlers-Danlos Syndrome

The debut episode of People You Should Know Podcast! Bill describes the vision for the podcast and then speaks with Megan King, who shares her experiences as an individual with Ehlers-Danlos Syndrome (EDS).

About EDS:

Ehlers-Danlos Syndrome is a connective tissue disorder, which causes skin hyperextensibility (skin that can be stretched further than normal), joint hypermobility (joints that stretch further than normal) and tissue fragility. According to the Ehlers-Danlos Society, research statistics of EDS show the prevalence as 1 in 2,500 to 1 in 5,000 people.