By Shivani Vyas
5
11 ratings
The podcast currently has 41 episodes available.
Show Notes:
In this episode, I chat with Wes Michael, President at Rare Patient Voice.
Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 40 years experience in marketing research, and more than 20 years in healthcare marketing research.
Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services.
While Rare Patient Voice started by focusing on rare diseases, they now welcome patients and caregivers with all medical conditions.
Rare Patient Voice takes an active approach to meet patients at conferences and events. Their phone is always open to members. The more they can engage with patients, the more they can advocate for them and help their voices be heard.
Explore more!
Website: https://rarepatientvoice.com/
LinkedIn: https://www.linkedin.com/company/rare-patient-voice/
See you all next week!
- Shivani Vyas ☺
@raredisorderpod on IG, FB, & Twitter, The Rare Disorder Podcast on LinkedIn
Show Notes:
In this episode, I chat with Ben LeNail, Healthcare Investor & Consultant.
Ben Lenail, based in Palo Alto CA, has consulted with biotech companies such as Minoryx Therapeutics, Autobahn Therapeutics, and Deep Genomics. Ben is an investor in 15 early-stage healthcare companies with HealthTech Capital. He is a mentor with the Chan Zuckerberg Initiative; and serves on the Board of ALD Connect and the Advisory Board of the UCSF Center for Vulnerable Populations.
Ben has worked in high-tech in Silicon Valley for 30+ years. He’s a graduate of the University of Washington in Seattle WA and Sciences-Po in Paris. Ben’s wife Laurie Yoler has been his partner for three decades.
Explore more!
WSJ Profile: https://www.wsj.com/articles/a-rare-disease-wont-keep-this-mountain-man-off-the-trails-11544875201
Mercury News Profile: https://www.mercurynews.com/2017/11/13/palo-alto-entrepreneur-brings-tech-savvy-to-an-illness-that-hits-home-ald/
Brain & Life Profile: https://www.brainandlife.org/articles/adrenoleukodystrophy-inspires-purpose/
See you all on Saturday!
- Shivani Vyas ☺
@raredisorderpod on IG & Twitter, The Rare Disorder Podcast on LinkedIn
Show Notes:
In this episode, I chat with Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain.
Terry Jo Bichell worked as a documentary filmmaker in the early days of videotape, then became a public health nurse-midwife after filming a difficult birth in West Africa. When her youngest child, Lou, was diagnosed with Angelman syndrome, she switched from midwifery to clinical research on Angelman syndrome. Eventually, she went back to school to earn a PhD in neuroscience from Vanderbilt University in an effort to find treatments for her son. Along the way, she studied gene-environment interactions in Huntington disease as well as circadian aspects of Angelman syndrome and was a columnist for HDBuzz. After graduating, she was the Founding Director of the Angelman Biomarkers and Outcome Measures Alliance until 2018.
Dr. Bichell founded a new non-profit in 2019, COMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders), to assist other rare and ultra-rare neurogenetic disorders with clinical trial preparations.
Explore more!
Website: https://combinedbrain.org/
Instagram: https://www.instagram.com/combinedbrain/
Episode Segments:
Intro, Rare disease fact of the week, Guest interview, Q & A Session, Outro
See you all next week!
- Shivani Vyas ☺
@raredisorderpod on IG & Twitter, The Rare Disorder Podcast on LinkedIn
Show Notes:
In this episode, I chat with Daniel Dry Dock Shockley, a retired Navy, a veteran, and a 10 year hereditary colon cancer warrior.
Daniel serves as a member of the University of Michigan Genetic Hereditary Testing (Might) Advisory Board and of the University of Texas Health Center, San Antonio, Texas, where he does live-case presentations for the Genetics in GI Malignancy multidisciplinary annual conferences.
Daniel says that his purpose is to educate the world about Attenuated Familial Adenomatous Polyposis (AFAP) and continuing the legacy of Dr. Henry T. Lynch, who emphasized the importance of early detection in a hope of saving lives.
Right now, Daniel is seeking legislative jurisdiction to designate the last full week of March as Hereditary Colon Cancer Syndrome Awareness Week. It's a daunting task and will take years to accomplish. However, he is “battle tested” and ready to lead the charge!
After three years of collaborating on March 23, 2021, Texas Senator Donna Campbell, M.D., sponsored Daniel’s HCC resolution initiative and presented the resolution on the Senate Floor, during Texas 87th Legislature Session.
Connect with Daniel!
Instagram: instagram.com/dandrydock___
Important Links: https://linktr.ee/Dandrydock
Episode Segments:
See you all next Saturday!
- Shivani Vyas ☺
@raredisorderpod on IG & Twitter, The Rare Disorder Podcast on LinkedIn
The episode we've all been waiting for, and it's finally here! In this episode, I'm so honored to chat with Beth Nguyen. Beth is the Managing Director; Founding Partner, and President of Rare STRIDES.
Beth is a seasoned registered nurse with a diverse background in critical care, transplant, and emergency room; Honored Atlanta AJC Nurse of the Year Nominee three years consecutively for excellence in bedside care; Serves as the volunteer Georgia Ambassador for the National Organization for Rare Disorders; Led efforts to establish the Georgia Rare Disease Advisory Council; Leader of Annual Rare Disease Day events in Georgia; Founder of Worldwide Syringomyelia & Chiari Task Force; a 501c3 nonprofit; Founder of Rare STRIDES; Developed the first Rare Multidisciplinary Rare Disease Model of Care, Authored numerous published articles and a book including “What is the Purpose of Collaboration and Continuity of Care”, “Beyond Syringomyelia”, and was the Recipient of the 2017 Rare Impact Awards in Washington, DC.
Beth’s humbling and often difficult personal experiences with rare as a patient, medical professional and rare leader empowered her to give back to those with unmet needs in the rare community. She is leveraging wisdom gained over the years through first-hand experience as a powerhouse of knowledge to help drive progress in all areas of care coordination and direct medical care in the field of rare diseases. She is fiercely devoted to empowering healthcare teams and patients with groundbreaking technology that will promote patient safety, prevent complications, advance care coordination, deliver vetted services, streamline models of care, and set a new standard for excellent medical care across all disciplines for men, women and children with rare diseases.
Favorite quote: “Rather, ten times, die in the surf, heralding the way to a new world, than stand idly on the shore.” Florence Nightingale
***note: in this episode, I mentioned that Rare STRIDES is a non-profit organization. Instead, it is an organization that is passionate about giving back to fund patient programs and continued innovation for children and adults with rare diseases who deserve excellence in healthcare.
Explore more!
rarestrides.com
@rarestrides
In this episode, I chat with Rich Horgan, the Founder and President of Cure Rare Disease.
Cure Rare Disease is developing custom therapeutics that are as unique to the individuals they are meant to treat. Their mission is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians, and in partnership with our generous donors. Their customized therapeutics are designed specifically for the men and women who continue to fight for their right to live long, full, healthy lives despite having been diagnosed with a rare genetic disorder for which they’ve been told there is no treatment or cure.
Richard Horgan is the Founder and President of Cure Rare Disease. He has a deep passion for reimagining how rare and ultra-rare diseases are treated. With a younger sibling impacted by a rare disease, Rich has a strong interest in accelerating promising treatments for rare diseases. He formed an interdisciplinary collaboration of world-class researchers and clinicians to pioneer the rapid development of customized therapies for rare, genetic diseases. Prior to making his foray into biotech, Rich had extensive experience working in new business development at Corning Incorporated where he led the successful launch of a new product line. He also launched a successful car washing business in New York. He holds a BS from Cornell University where he graduated summa cum laude and an MBA from Harvard Business School where he was awarded the Blavatnik Fellowship for Life Science Entrepreneurship. Rich was recognized by Business Insider as one of ‘30 leaders under 40 transforming healthcare in 2020’ and, most recently, was named on the 2021 Forbes 30 under 30 list.
Learn more about Cure Rare Disease and how to get involved!
Website: https://www.cureraredisease.org/
Instagram: https://www.instagram.com/cureraredisease/
In this episode, I chat with Saida Mahoney, a fighter of Partial Trisomy Of 8q.
Saida Luvenia Mahoney is 25 years old and lives in Oakland, California. She is an author and a proud student at Modesto Junior College, San Joaquin Delta College, and Merced College.
Saida is a performing arts major and creates music, does dance, and performs in theatre. She also does recording arts, songwriting, and acting. Saida is a Pageant Queen and was crowned 2021 California Miss Amazing Queen and was also a finalist at The Miss Amazing Nationals. In addition, she is a athlete for the Special Olympics, Miracle League, and AYSO Soccer. She loves to dance, cheer, and sing.
Saida is a proud rare disease and disability advocate. One of her goals is to transfer to UCLA, UC Irvine, or UC Santa Barbara when she graduates from Modesto Junior College.
Some of her favorite music artists and bands include Don Henley, The Eagles, Justin Bieber, Glenn Frey, Joe Walsh, Timothy B Schmit, KT Oslin, Amy Grant, Vince Gill, The Doobie Brothers, Dolly Parton, Reba McEntire, Martina McBride, Deacon Frey, Lucy Walsh, Katy Perry, Foreigner, Linda Ronstadt, Jackson Browne, James Taylor, Stevie Nicks, Lindsey Buckingham, Fleetwood Mac, Tom Petty, Jack Tempchin, Jojo Siwa, Bob Seger, and more!
Finally, she loves to travel, camp, go to the moves, and help others. Currently, she is getting many projects and foundations starting up regarding her rare disease advocacy!
Keep up with her advocacy journey!
Blog: https://drewsloversmoon.wordpress.com/2021/01/03/my-journey/
Facebook: https://www.facebook.com/OMGWHATSHAPPENINGWITHSAIDA/
Instagram: https://www.instagram.com/drewsloversmoon/
Her very own published book: https://www.wattpad.com/story/259234397?utm_source=ios&utm_medium=link&utm_content=share_writing&wp_page=create&wp_uname=DREWSLOVERSMOON&wp_originator=bB2OGyqdMAHwEBepVCAm99f4Qefqwd4PscGeT0WXFc%2Bq%2Bn3zL%2Fpo9avRH92bI09Xz5cc8gX0oIlEn0ArI%2BGF80ihE%2B%2BIEMBCl%2BEy3MPGdbMsZq10l29nMnvVsJcrMq%2Bi
In this episode, I chat with Ella Balasa, a Patient Advocate, Speaker, and Consultant.
Ella is passionate about amplifying the patient voice in healthcare.
Having a background in biology, Ella has experienced both sides of the research spectrum - as a patient and a scientist. Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thrive in the lungs of those with CF, her work in the lab intersected with her health. This fueled Ella's interest in involving herself in a research capacity on committees and advisory roles with organizations providing a patient perspective and promoting patient centricity. Simultaneously she developed a passion for writing, sharing her research experiences and introspectively writing about life with a chronic disease.
When Ella became very ill in the winter of 2019 with an exacerbation of the bacteria in her lungs due to CF, these experiences and interactions with researchers gave her the confidence to leverage her voice – and pursue an experimental treatment called phage therapy. Ella sought out and coordinated her treatment directly with researchers at Yale University. Being one of a few patients in the US who had tried this therapy, her experience was documented by the Associated Press. Because of the success of her treatment, Ella wanted to share about her experience to increase visibility for a viable alternative for other patients facing drug resistant infections. The exposure provided a platform from which Ella established herself as a patient advocate, publishing her experience, empowering other patients also battling infection, and inspiring the research community in further pursuit of phage research.
Since then, Ella has spoken publicly at various conferences, congressional meetings, the Milken Institute, and the FDA about the need for the development of novel therapies for the treatment of antibiotic-resistant infections. Ella has been published in medical journals, she is a patient reviewer for BMJ journal, and on the board of directors of the US Adult CF Association, a CF non-profit committed to educating and supporting the CF community. Ella believes that understanding the patient experience is vital to healthcare companies, researchers, and initiatives and receiving this information through solution focused patient advocates facilitates both the disease community and all other stakeholders to advance medical progress together.
Learn more about Ella & her work!
Website: https://www.ellabalasa.com/
Instagram: https://www.instagram.com/ellabalasaadvocacy/
In this episode, I chat with Terry Wilcox, the Founder and Executive Director of Patients Rising and Patients Rising Now.
Formed in 2015 as a 501(c)3, Patients Rising has developed a significant following of over 110,000 patients and caregivers and has guided more than 25,000 of them on their journeys to advocate for themselves and their loved ones to get the care and treatments they need to live a fulfilling life. Patients Rising Now is a national nonprofit organization dedicated to advocating for the rights of patients with chronic and life-threatening illnesses. We work at community, state and federal levels to activate patients in support of reforms and legislation aimed at advancing patient access to and affordability of healthcare.
A passionate advocate for patients with cancer and other serious diseases, Terry Wilcox is Executive Director of Patients Rising, a non-profit patient education and advocacy organization that helps patients get access to essential diagnostics and the treatments they need.
Inspired by Selma Schimmel, considered by many as the “original” young adult survivor advocate, Terry left a career in Los Angeles in the entertainment industry to join Vital Options International (VOI), a cancer communication, education and advocacy organization Selma launched in 1983 to facilitate a global dialogue on cancer. From 2008 to Selma’s death in May 2014, Terry worked alongside her mentor as creative director of VOI and the supervising producer of a video program called The Group Room that featured discussions with the world’s leading oncologists and cancer researchers.
After Selma’s death, Terry continued to advance Selma’s legacy as VOI’s ExecutiveDirector until August 2015, when she moved to Washington, DC and co-founded Patients Rising with her husband. Now Terry and her team engage the patient community, along with physicians, health policy experts and allied healthcare professions, to develop realistic, solution-oriented discussions so those with life-threatening and chronic diseases will have a voice in shaping policies that will improve access to quality care.
Learn more about Patients Rising and Patients Rising Now and how to get involved!
Websites: https://www.patientsrising.org/ & https://patientsrisingnow.org/
Instagram: https://www.instagram.com/patientsrising/ & https://www.instagram.com/patientsrisenow/
In this episode, I interview Jenny Jones, a fighter of Familial Adenomatous Polyposis and Short Bowel Syndrome.
Jenny was diagnosed with the rare, hereditary colon cancer syndrome Familial Adenomatous Polyposis at age 8 and had her first surgery to remove her colon at age 9. After experiencing life-threatening complications, Jenny required 4 more surgeries that year and developed another rare disease - Short Bowel Syndrome as a result. She lived with an ileostomy for 6 years before having it reversed into a Straight Pull Thru and again experienced life-threatening complications. Jenny has been able to surpass all the odds though and went on to earn a Master's Degree and maintains full time employment in addition to her rare disease awareness and advocacy efforts through her blog, Life's a Polyp.
Keep up with her advocacy journey!
Blog: www.LifesaPolyp.com
Youtube: www.Youtube.com/LifesaPolyp
Merch Website: www.CafePress.com/LifesaPolyp
Social Media Handle: LifesaPolyp
The podcast currently has 41 episodes available.