Spinal Muscular Atrophy (SMA) is a rare disease that affects the motor nerve cells in the spinal cord. SMA may affect a person’s ability to eat, walk, or even, breathe. SMA is also the number one cause of death in infants. In this episode, Dr. Susan Begelman discusses what causes SMA, newborn screening and hope on the horizon.

About Dr. Susan Begelman

Dr. Susan Begelman is the Vice President of the Rare Disease and Neuroscience Medical Unit in US Medical Affairs at Genentech. In this role, Susan provides scientific leadership for a department responsible for generating and executing medical strategies across a broad portfolio of therapeutic areas.

Susan is widely regarded as a respected leader with an unwavering commitment to patients and has over a decade of experience in the biopharmaceutical industry. Since joining Genentech in 2008, Susan has overseen product development activities and provided oversight of medical launch strategies and phase 3b/4 trials in multiple therapeutic areas that include cardiovascular disease, neuroscience, rare disease, and stroke. Prior to joining the biopharmaceutical industry, she was an academic vascular medicine physician in the Department of Cardiovascular Medicine and Medical Director of the Noninvasive Vascular Laboratory at the Cleveland Clinic for six years.

Susan received a Bachelor of Arts in Biology from the University of Pennsylvania and her Medical Doctorate from Hahnemann University School of Medicine in Philadelphia. She completed her residency in internal medicine and fellowship in vascular medicine at the Cleveland Clinic. Susan is a fellow of the Society for Vascular Medicine for which she was a Committee Chair and held elected positions as a Board of Trustees Member, Secretary, and Treasurer. Susan is also a fellow of the American College of Cardiology.

Episode Details

* About Dr. Susan Begelman

* What is Spinal Muscular Atrophy and how it is typically diagnosed

* Newborn screenings how early diagnosis impacts overall prognosis

* Parent expectations for having a child with SMA

* Hope on the horizon for those with SMA

Related Links

Cure SMA (http://www.curesma.org/)

SMA Foundation (http://www.smafoundation.org/)

Muscular Dystrophy Association (https://www.mda.org/disease/spinal-muscular-atrophy)

United Spinal Association (https://www.unitedspinal.org/)

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringi...

On this episode of the Patient Activation Network Podcast, we talk to Phyllis S. Quinlan, author and nurse entrepreneur, about bullying in healthcare. Phyllis has practiced in a variety of emergency services, acute care, subacute care and long term care settings. She holds national certifications in Critical Care, Emergency Nursing and Nursing Professional Development; and has held senior leadership positions in administration and education. She is also a Legal Nurse Consultant.

She is a regular on the online program, Nursing Success TV http://www.nursingsuccesstv.com in her Ask Dr. Phyllis coaching segment and she was a featured speaker in five of the Take Care of Your Nursing Career Webcast Series offered by the National Healthcare Career Network.

On this podcast, Phyllis is also discusses her new book, Bringing Shadow Behavior into the Light of Day. This book provides healthcare leaders with a guideline for the assessment and management of the disruptive behaviors of bullying and incivility. It is time to definitively address the behaviors that lurk in the shadows and undermine RN and other professional caregiver’s vitality and resilience. How we treat each other is directly related to how we engage our patients and their families.

Episode Details

* About Phyllis S. Quinlan, PhD, RN-BC* Bullying culture in healthcare* Where bullying originates* How disruptive behavior puts patients at risk* Why caregivers are susceptible to bullying* Reporting bullying without fear of retribution* Reforming bullying behavior* About Bringing Shadow Behavior into the Light of Day* Closing Thoughts

Related Links

* To learn more about Phyllis or her books, please visit: http://www.mfwconsultants.com/

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringing you another inspirational story soon.

Sheila Warnock had several profound experiences change her life. First, she became sole caregiver of her ill mother and an emotional crutch for her best friend, Susan, who was diagnosed with cancer. By undertaking this dual role, Sheila truly experienced the tremendous burden caregivers have to endure.

In 1988, she became part of a group of 12 women (mostly strangers to each other) who came together and stayed together for the next three and a half years to care for friend Susan. The contrast of caring for someone without support to the experience of sharing responsibilities with a group proved to Sheila that this new collaborative approach to caregiving was something of immeasurable value and needed to be shared with caregivers everywhere.

As a result, she and her co-author, Cappy Capossela, documented the systems used by the group in their book, Share The Care, How To Organize A Group To Care For Someone Who Is Seriously Ill, Simon & Schuster, 1995. This system guides friends, neighbors, co-workers, and acquaintances with the roadmap for creating and maintaining a “caregiving family” to support someone they know facing a health, aging, medical issue or any circumstance were support is needed including multiple births, or grandparents raising small children. In this episode we learn more about Sheila and her story.

Episode Details

* How strangers got together to form a funny family for a friend in need* How the funny family’s journey through cancer helped others with cancer* Why Share the Care was created* A teamwork approach to caregiving* How to ask for help as a caregiver* About Share the Caregiving * Understanding the Caregiving Crisis* Advice for new caregivers

Related Links

* https://sharethecare.org/

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringing you another inspirational story soon.

“This program helps military vets get the credits they deserve,” said Mary Beth Prendergast about the Vets to Bachelor of Science in Nursing (BSN) program at National University in San Diego. During this episode, Mary Beth discusses this program and how the flexibility of the program allowed a student to spend time with his mom in her final days.

About Mary Beth Prendergast

Ms. Mary Beth Prendergast is a Nursing faculty member at National University and has earned a M.S. Nursing from San Diego State University.

About National University

National University is San Diego’s largest private nonprofit university, founded in 1971 by retired U.S. Navy Lt. Cmdr. David Chigos. National University’s mission is to provide accessible, achievable higher education to adult learners. Today, National University educate students from across the U.S. and around the globe, with over 150,000 alumni worldwide.

Episode Details

* About Mary Beth Prendergast* Vets to BSN Program at National University* How Medics in the Military can qualify for this special Bachelors of Nursing Program* How the flexibility of the program and the support of the staff helped one of the students cope with the loss of his mother* Work-life balance, coaching and the student experience at National University* Closing thoughts

Related Links

* https://www.nu.edu/

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringing you another inspirational story soon.

“As I got on the elevator that final time, I realized that this was the end of my clinical career.” Karen Daley, RN reflected on what it felt to walk out of the Emergency Room for the last time after an accidental needle stick led to a diagnosis of HIV and Hep C. “I just never thought it would end this way.”

On this episode of the Patient Activation, Karen Daley shares her emotional journey and the work she is doing to help raise awareness for needle stick safety.

About Karen Daley, PHD, MPH, RN, FAAN

Karen Daley is an American nurse, past president of the American Nurses Association, former director of the American Nurses Credentialing Center and an advocate for the prevention of needlestick injury in healthcare. Karen worked as an emergency room nurse for many years until sustaining a needlestick injury on the job in 1998. After drawing blood from a patient, she was stuck by another needle that was wedged in the container as she was trying to dispose of the needle. A few months later, Daley tested positive for HIV and hepatitis C.

Daley has not let her diagnosis keep her down. She encouraged the passage of a bill at the Massachusetts state legislature that requires hospitals to report needlestick injuries to the Massachusetts Department of Public Health. For Daley’s work in needlestick injury prevention, she was named a Fellow of the American Academy of Nursing in 2006. Daley has served as director of the American Nurses Credentialing Center and as president of the Massachusetts Association of Registered Nurses (MARN) and the Massachusetts Center for Nursing.

In 2010 and 2012, she was elected to two-year terms as president of the American Nurses Association, where she had previously served on the board of directors. She is on the board of trustees for the American Nurses Foundation. In 2013, she was named to the Modern Healthcare Top 25 Women in Healthcare for 2013.

Episode Details

* About Karen A. Daley, PHD, MPH, RN, FAAN

* Being diagnosed with HIV and Hep C

* Shifting from a clinical focus to raising awareness for needle safety

* Advice for newly diagnosed HIV and Hep C patients

* New blood draw technology for safer blood draws

* Closing thoughts

Related Links

* https://velanovascular.com/

Ways to Listen

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringing you another inspirational story soon.

Dr. Shawna Pandya dreamed of being a super hero as a little girl. As she grew, her dreams shifted to becoming an astronaut and medical doctor. While she may not done a cape to work, she is an every day hero who helps patients everyday and helps further our mission to explore this galaxy and beyond. On this episode of the Patient Activation Network podcast, we discuss Dr. Pandya’s fascinating career journey along with physician communication, soft skills, patient experience and what doctors can learn from pilots.  

About Dr. Shawna Pandya

Dr. Shawna Pandya is a physician, speaker, martial artist, citizen-scientist astronaut candidate with Projects PoSSUM & PHEnOM, and prime crew aquanaut with Project Poseidon. Through her involvement with Project PoSSUM, Dr. Pandya was part of the first crew to test a commercial spacesuit in micro-gravity. Dr. Pandya holds degrees in Honors Neuroscience (BSc. Hons, University of Alberta), Space Studies (MSc., International Space University) and medicine (MD, University of Alberta). She is licensed as a general practitioner. She is an accomplished speaker, having given talks at TEDxUAlberta, TEDxEdmonton and the University of Alberta’s Peter Lougheed Leadership College at the invitation of former Prime Minister Rt. Hon. Kim Campbell. 

Episode Details

* About Dr. Shawna Pandya

* Becoming an astronaut

* What physicians can learn from pilots

* Physician communication and the patient experience

* Physician soft skills and communication

* Closing thoughts

Related Links

* http://shawnapandya.com/

* Instagram

* Facebook

* Twitter

Ways to Listen

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringing you another inspirational story soon.

Did you know that January is Cervical Health Awareness Month? Sports reporter and television host, Erin Andrews, was diagnosed with cervical cancer in 2016. Today, Erin is cancer-free and urging all women to see their doctors and get regular testing for this preventable and treatable disease. 

On this episode of the Patient Activation Network Podcast, Erin will share her personal journey with cervical cancer and tips to mobilize women to take charge of their health and get tested. Erin will be joined by OB-GYN and women’s health expert, Dr. Jessica Shepherd, who will discuss the best way for women to protect themselves against cervical cancer and advice for preparing for their annual exam. 

Dr. Shepherd is an OB/GYN and women’s health expert and also the founder of Her Viewpoint, an online women’s health forum that focuses on addressing taboo topics in a comfortable setting.  As an OB/GYN, she practices at the University of Illinois at Chicago and also serves as the Director of Minimally Invasive Gynecology.  She is seen regularly as an expert on The Today Show,  Dr. Oz, Steve Harvey, CBS News, FOX news (NY, LA Chicago and Dallas), WGN News and WCIU in Chicago where she is a monthly health contributor, as well as, guest co-host.

Cervical Cancer Facts

* Every 2 hours, 1 woman dies of cervical cancer. That’s a stat we all have the power to change!

* Cervical cancer is not only treatable; it is preventable.

* More than half of new cervical cancer cases occur in women who have never or rarely been tested.

* Pap+HPV Together provides the best possible protection for women ages 30-65 and detects 95% of cervical cancer cases.

Episode Details

* About Dr. Shepherd

* About Erin Andrews

* Erin’s diagnosis

* Surgery can’t keep Erin off the field

* Advice for women facing cervical cancer diagnosis

* Signs and symptoms of cervical cancer

* Closing thoughts

Related Links

* https://changethisstat.com/

Ways to Listen

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringing you another inspirational story soon.

Jack Osbourne grew up in the public eye. In 2012, a problem with Jack Osbourne’s eye went public.

After The Osbournes ended, Jack went on to star in a number of television shows. The first was Jack Osbourne: Adrenaline Junkie, a reality TV show that followed Jack’s journey to get into peak mental and physical shape in order to conquer the challenge of climbing the 3000 foot rock face of El Capitan in Yosemite National Park. Next, Jack went on to star in Haunted Highway. It was during filming this show that his life would be forever changed.

“This little black dot appeared in the center of my vision”, reflects Jack on the start on what would become his MS detour. He was filming Haunted Highway in Utah when the problem with his vision began. “By the time I got home 48 hours later, I lost 90 percent of the vision in my right eye.” Upon returning home, his eye doctor sent him for an MRI. “About two days later, they were like, ‘This is looking like MS’.”

Jack has not let his diagnosis slow him down. In 2013, just a year after being diagnosed, Jack competed on Dancing with the Stars, finishing third in the competition. In 2016, Jack teamed up with his legendary rocker father, Ozzy Osbourne, and debuted Ozzy & Jack’s World Detour.  The father and son history buff duo travel to historically significant locations and landmarks to explore the quirky or unusual aspects of their background. In 2018, sister, Kelly Osbourne, joined in for the adventures.

Today, Jack is raising awareness for MS. He joins the podcast to discuss his diagnosis, how it has affected his career and family, and how he is doing today. He also discusses his patient advocacy work and his MS website: http://youdontknowjackaboutms.com/

Episode Details

* About Jack Osbourne

* Life After The Osbournes

* How Jack was Diagnosed with MS

* How Jack’s Diagnosis Affected the Family

* What Dancing with the Stars Meant to Jack After the Diagnosis

* Ozzy and Jack’s World Detour

* Jack’s MS Advocacy

* Closing Thoughts

Related Links

* http://youdontknowjackaboutms.com/

Ways to Listen

Click the podcast player above to listen, or you can find our podcast on your favorite channels: iTunes, Stitcher, TuneIn, and more. Thank you for listening and we look forward to bringing you another inspirational story soon.

“It felt really odd to me to walk into the transfusion center for chemo and see a room full of men my grandfather’s age and then go to a doctor’s appointment in a different room covered in balloon stickers and children’s handprints on the walls. Even finding other patients with a similar age and diagnosis across the country was a struggle. Where did I fit in? I often felt very alone but I knew there had to be other young adult patients out there that felt the same. I knew this wasn’t the way the cancer experience had to be for us.” – Kayla Redig

About Kayla Redig

Kayla Redig was a competitive athlete and elementary school teacher before she was diagnosed with breast cancer at 24 years-old. After experiencing the isolation and uniqueness of being a young adult cancer patient, she grew determined to change the experience for fellow patients and survivors.

About Vincible

VINCIBLE is a documentary that follows 27-year-old cancer survivor, Kayla Redig, as she creates a voice for the 69,999 other young people who lose their youth to this disease each year. Among the many issues covered in this film, Redig explores the need for a support community to assist young adults when they are diagnosed in the prime of their lives.

Episode Details

* About Kayla Redig

* Kayla’s cancer journey

* A perspective on a young adult’s diagnosis and treatment

* How Kayla’s cancer connected the community

* Sharing Cancer on Social Media

* About Vincible

* Advice for young adults with cancer

* Coping with self-consciousness after surgery

*

Related Links

* www.vinciblethedocumentary.com

* Instagram

* Facebook

* Kayla’s Cancer Journey Blog

When we last spoke to Laura Blackwell, she shared her journey of being a young mom diagnosed with breast cancer. She is now a 10 year survivor of stage 1 Triple Negative Breast Cancer. You can hear her inspirational cancer journey here or by clicking the link below.

Today, she is taking on a new kind of challenge. Laura Blackwell is running for Cabarrus County School Board. In this podcast, Laura discusses her cancer journey, as well as, why she believes she is the best candidate for the school board. 

Related Links

* https://www.blackwell4schoolboard.com/

* Facebook

* Twitter

* Instagram

* PAN21: From Patient to Patient Advocate with Laura Blackwell