CF in Brazil, and one outstanding advocate

Living With Cystic Fibrosis

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Lagt till four år sedan

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Mind The Business: Small Business Success Stories

1
Understanding Taxes as a Newly Formed Small Business - Part 2 of the Small Business Starter Kit 28:24

för 21 dagar sedan28:24

Spela Senare

Listor

Gilla

Gillad

28:24

In our second installment of the Small Business Starter Kit series - we’re tackling a topic that’s sometimes tricky, sometimes confusing, but ever-present: taxes. Hosts Austin and Jannese have an insightful conversation with entrepreneur Isabella Rosal who started 7th Sky Ventures , an exporter and distributor of craft spirits, beer, and wine. Having lived and worked in two different countries and started a company in a heavily-regulated field, Isabella is no stranger to navigating the paperwork-laden and jargon-infused maze of properly understanding taxes for a newly formed small business. Join us as she shares her story and provides valuable insight into how to tackle your business’ taxes - so they don’t tackle you. Learn more about how QuickBooks can help you grow your business: QuickBooks.com See omnystudio.com/listener for privacy information.…

för ungefär ett år sedan 57:39

MP3•Episod hem

We’re going to Brazil for this podcast. Brazil is famous for some soccer players; you remember Pele and others. It’s the largest country in South America, it has 4 times zones…60 percent of the amazon rainforest is in Brazil, their flag has 27 stars on it and they speak Portuguese there.

And the food looks amazing there.

I have never been to Brazil, but Gabriel Johnson was born and raised there! Gabriel is the Projects and Institutional Relations Coordinator at Unidos pela Vida - Brazilian Institute of Cystic Fibrosis Care, has worked for nonprofits for the last 8 years.

He graduated in journalism and marketing.

Gabriel has MBAs in Digital Marketing and Project Management and is currently a master's student in Communication Sciences at the University of Porto, Portugal.

Gabriel is a patient advocate for people with cystic fibrosis and rare diseases in Brazil. He’s been doing this for the past two years….and he’s only 31 years old!

To learn more about CF in Brazil visit the Unidos pela Vida website (Vernonica Stasiak's Organization and where Gabriel works). www.unidospelavida.org.br

Thank you to Beth Vanstone for producing this podcast. Beth is a CF advocate in Canada. Her daughter Madi has CF. She can be reached at: beth@thebonnellfoundation.org

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

153 episoder

Living With Cystic Fibrosis

CF in Brazil, and one outstanding advocate

Living With Cystic Fibrosis

published för ungefär ett år sedan

Dela

MP3•Episod hem

And the food looks amazing there.

He graduated in journalism and marketing.

Gabriel has MBAs in Digital Marketing and Project Management and is currently a master's student in Communication Sciences at the University of Porto, Portugal.

Gabriel is a patient advocate for people with cystic fibrosis and rare diseases in Brazil. He’s been doing this for the past two years….and he’s only 31 years old!

To learn more about CF in Brazil visit the Unidos pela Vida website (Vernonica Stasiak's Organization and where Gabriel works). www.unidospelavida.org.br

Thank you to Beth Vanstone for producing this podcast. Beth is a CF advocate in Canada. Her daughter Madi has CF. She can be reached at: beth@thebonnellfoundation.org

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

153 episoder

Wszystkie odcinki

Living With Cystic Fibrosis

1
Aaron Trumm: living his best life! 45:23

för 3 dagar sedan45:23

45:23

I love that I was able to bump into Aaron Trumm via an email. He reached out to check in about our scholarship program for college. We only award grants to undergrad students, but I was intrigued by all I learned about him. Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man known as the Lion of Zimbabwe. And he’s going to law school in the Fall. We have a lot to talk about! To get in touch with Aaron: https://aarontrumm.com A music production education brand: https://recordinglikemacgyver.com This site Aaron says is disappearing soon! https://nquit.com Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Bob Coughlin, CF Dad: from Congress to Science 45:50

för 17 dagar sedan45:50

45:50

CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a chronic illness and the hope brought by new therapies. In this conversation, Bob Coughlin shares his emotional journey as a parent of a child with cystic fibrosis, detailing the transformative impact of new treatments and the importance of community support. He discusses the hope brought by advancements in gene therapy and the future of cystic fibrosis treatment, emphasizing the need for continued advocacy and innovation in healthcare. The conversation highlights the emotional highs and lows experienced by families dealing with chronic illness and the importance of maintaining a positive outlook. Bob aligns real estate strategies with scientific business objectives. Which is very cool if you ask me. He’s on numerous boards and is extremely involved in work, life and organizations. ___________________________ Bob Coughlin is a Managing Director at JLL and is the New England’s Life Science and Healthcare Practice Group lead. He specializes in the representation of lab, GMP manufacturing and technology space. Robert delivers creative solutions that align real estate strategies with scientific business objectives. Experience Robert most recently operated as the President & CEO of the Massachusetts Biotechnology Council, where his mission was to advance Massachusetts's leadership in the life sciences to grow the industry. Robert has spent his career in both the public and private sectors. Before joining MassBio, he served as the Undersecretary of Economic Development within Governor Deval Patrick’s administration, where he prioritized both healthcare and economic development issues and was a strong advocate for the life sciences industry in Massachusetts. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. Robert has also held senior executive positions in the environmental services, capital management and venture capital industries. Board Involvement Franciscan Children’s Hospital, Vice Chair, Board of Trustees Team Impact, Member of National Board of Directors MassBio, Member, Board of Directors BA Sciences, Member, Board of Directors Anagram, Member, Board of Directors Nuvara, Member, Board of Directors Cystic Fibrosis Foundation, Chair, MA/RI Board of Directors Schwartz Center for Compassionate Care, Lifetime Board Member Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Michael Armstrong, wise beyond his years 26:45

för 4 weeks sedan26:45

26:45

Michael Armstrong is a 25-year-old pre-law student. He loves to read, paint, play card games and video games. He was diagnosed with CF as an infant. We’re going to talk about his CF journey and how life took a turn when he was being evaluated for a lung transplant in 2023 and 2024. Michael was featured in the 2025 Portraits of cystic fibrosis calendar and our first or second calendar he was featured when he was about five with his brother. Michaels dad, Tom was on our Board of Directors for many years…and I was lucky to see him just the other day. Thanks for sharing your story Michael. Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Life after the death of a child to CF 42:53

för 6 weeks sedan42:53

42:53

If you lose a child to CF, what does that do to parents? To their identity? And their place in the CF community. These are hard discussions to have, but for a couple years now Peggy Hawkins has want to share her story on this podcast. Peggy talks about the toll waiting for a transplant takes on a family. One of the issues was that one of them always had to work, in this case it was her husband, so she stayed with Stephen. Peggy and her husband are the parents of three men. She lives in South Carolina now but was born and raised in Detroit. Peggy worked as a nurse for 43 years (not in CF). Their oldest son Chris is 37 and their youngest is 31 years old. Stephen who died from complications of CF was the middle child. He died at 29 years old. To get in touch with Peggy you can email her here: stephen65roses@aol.com Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Advocate, Amanda Boone 1:05:19

för 8 weeks sedan1:05:19

1:05:19

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB). Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Amanda Boone I would say is a rock star advocate in the CF and rare disease community. She has cystic fibrosis and lives in Colorado. She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state. We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you. Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda’s health was declining. Then Trikafta, a CF modulator drug was approved by the FDA. This groundbreaking drug gave Amanda her life back and kept her from needing a lung transplantation. Amanda lost many friends over the years to CF and she carries a profound sense of gratitude for every additional day she lives. Amanda co-founded CF United, a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Every member is either a patient or caregiver. Prior to CF United, Amanda served on the advocacy board Dell Children's Medical Center in Austin Texas and volunteered with the CF Foundation. When Trikafta faced affordability challenges through the Prescription Drug Affordability Board (PDAB) in Colorado, CF United emerged as strong advocates, successfully influencing decisions to maintain accessibility. CF United's advocacy goes beyond preserving access; they champion "The Independent Patient Voice." Amanda is committed to ensuring that all patients have access to the treatments they need, and that they get a seat at the table regarding decisions that affect their lives. In addition to advocacy, Amanda finds solace in her Colorado ranch with her husband son, two dogs and two horses. Amanda copes with her disease with laughter and realism. Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
BreatheStrong CF 44:09

för 9 weeks sedan44:09

44:09

I have known Becky Penuel for many years. Becky used to run Miles for cystic fibrosis and then merged her nonprofit with Brian Callanan’s nonprofit, CF Life Fitness. After the merger, the nonprofit name is now: BreatheStrong. Becky is the Executive Director and was not able to join us today but, her Director of Operations is with us . Shawna Gray is the director of Operations and Programs, and we are happy to have her. She is also the director of the Big Peach Sizzler 10K/5K Race Director. This is BreatheStrong CF’s annual Big Peach Sizzler 10K & 5K. She has been working to support the CF community since 2022 when she joined the Miles for Cystic Fibrosis team as the Development Director. Shawna’s nonprofit engagement began in college through volunteerism and logically progressed into her professional career. Outside of work, Shawna enjoys being present for her family (husband, 2 stepchildren, and rescue dog). To find out more visit the BreatheStrong CF web site: https://breathestrongcf.org Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
NonProfit Spot, Heather Carmona 38:25

för 10 weeks sedan38:25

38:25

The NonProfit Spot: a wealth of resources and classes about how to grow your board, fundraise and make strategic decisions that will change the trajectory of your Foundation for the better. They have an excellent newsletter too. Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all that she does. Heather and I have known each other for about 20 years, which seems impossible. Time does fly as they say. Heather's husband Scott has CF. Scott helped build The Bonnell Foundation from the beginning as he was one of the Board of Directors. Heather brings more than 25 years’ experience working throughout the public-private, philanthropic and nonprofit sector. She’s held executive-level positions as both Chief Administrative Officer and Executive Director and is well versed in economic and community development, education, government, social impact, and health and human services organizations. Heather oversees and supports the core branch teams with all aspects of client engagement and service delivery. If you have a nonprofit, or want to learn more about running a nonprofit, this could be the place for you. They have classes and resources, along with a free newsletter that anyone can access. It’s also full of local jobs if you’re searching for a nonprofit job. NPS is a women-owned and women-led LLC founded with one goal in mind to assist small to mid-sized nonprofits with fund development, governance,operations and management services. With more than 80 years of combined service our core team is based in metro-Detroit and has spent their professional and personal lives in service to the community. Since 2013, we have amassed a client roster of more than 100+ organizations ranging from small and emerging organizations with budgets under $100,000 to large regional and national nonprofits with budgets ranging upwards of $30 million. The average client we serve has an annual budget of between one and $5 million. NPS: https://nonprofitspot.com Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Rare Disease Diversity, Jenifer Waldrop 34:48

för 11 weeks sedan34:48

34:48

I encourage everyone to attend conferences when you can. I meet the most interesting experts in the field of the nonprofit world. From scientists, to pharma, to other nonprofit execs like me. I was thrilled to meet Jenifer Waldrop. She joined the Black Women’s Health Imperative as the Executive Director of the Rare Disease Diversity Coalition (RDDC) in October 2022. The organization address challenges faced by rare disease patients of color. They bring together rare disease experts, health and diversity experts. Their Vision: a world without health disparities in rare disease patients’ communities. Mission: to address the extraordinary challenges face by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH). Jenifer volunteers as the Professional Development Director of the National Association of Asian American Professionals (NAAAP) of Colorado. Find more here: Rarediseasediversity.org Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Melissa Yeager, Claire's Place Foundation 44:58

för 14 weeks sedan44:58

44:58

Melissa Yeager, Executive Director and Co-Founder of Claire’s Place Foundation Since the planning stages of Claire’s Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation’s namesake) and Ellie. With many years’ experience in project management and event planning, she has the drive and the experience needed to get the foundation off the ground as well as the personal history of raising a child with cystic fibrosis. Melissa is also a strong supporter of many charities and fundraising activities in her community, mostly related to causes that support families and children living with this and other rare diseases. Founding Claire’s Place Foundation has been a way for Melissa to give back and share her experience with other families living with cystic fibrosis. “We have always been blessed with a supportive family and a wonderful group of friends. It is my hope that we can provide the same type of support to families walking this path alone. It definitely takes a village or in this case a foundation to raise a child with a chronic, life threatening disease like cystic fibrosis” To learn more about Claire's Place Foundation visit: https://clairesplacefoundation.org Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Rock Star, Emily Schaller: one on one. 30:39

för 15 weeks sedan30:39

30:39

Emily Schaller , 42, is a heroine with one goal in mind, to Rock CF. A lot of laughs on this podcast with my friend Emily! She talks about her health, the Foundation, new and old legislation and what's coming up in 2025! Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise funds to increase the quality of life for everyone with CF. Emily created and manages an internationally acclaimed line of merchandise to help fulfill the mission of Rock CF. Today, Emily’s battle against this deadly genetic disease is printed in Runner’s World, FORBES, The Atlantic and SPIN magazines, the New York Times, The Washington Post, USA Today, NPR and posted on Competitor.com, Shape.com, the Associated Press, and various cystic fibrosis focused educational websites. She is a marathon running, super teacher and a speaker, addressing parents, patients and audiences about the effects of cystic fibrosis and the ever changing and improving treatments being made. Through Emily’s humor and personal experience, she inspires the masses to transform their lives with exercise, diet and goal setting. To get in touch with Rock CF: https://letsrockcf.org/rock-cf-half Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Healthcare funds you could be eligible to get, but probably don't know about. 35:39

för 16 weeks sedan35:39

35:39

“Charity Care is the best kept secret in healthcare.” says Eli Rushbanks "Only 29 percent of the people who should be helped by 340B, are helped." If, like me, you have not heard about Charity Care or Dollar For , I am glad you're here! This podcast will tell you about both Charity Care and the nonprofit, Dollar For. I learned about the program during a webinar by Patients Rising. You'll learn more about your rights regarding healthcare, and about the help that's out there. If you’re overwhelmed with medical bills, confused by insurance, your rights and about getting help, this podcast will be a wonderful education. Eli Rushbanks is an attorney who works at the intersection of medical debt and consumer protection. He currently is the General Counsel and Director of Policy & Advocacy at Dollar For, a patient advocacy non-profit that helps patients apply for hospital financial assistance. In that capacity he works with patients, advocacy groups, lawyers, state and federal regulators, and hospital leaders to improve patient access to and experience with financial assistance. He helped build Dollar For from the ground up which, so far, has helped relieve over $60 million in debt for nearly 20,000 patients. His work has been featured in publications such as the New York Times, Wall Street Journal, and NPR. His reports on charity care policy have been cited by the CFPB and have been the basis for class action lawsuits for charity care violations. Eli says, "Fourteen percent of people who applied to a hospital for Charity Care, never heard back from the hospital. There is not uniformity on how these programs are run." Terry Wilcox is the Chief Mission Officer with Patients Rising. Terry says that 340B sounds like a tax form, not something that patients know about. It’s not just to help patients, it’s to help hospitals too. But there has been some misuse of the program, “Expanded from 4 billion between 2000 and 2009, then the A.C.A codified the fact that they could expand, it ballooned to 66 billion dollars. And hospitals now have beautiful wings in their hospitals.” The 340B Drug Pricing program was implemented by Congress in 1992 and it allows hospitals to purchase drugs at significant discounts to serve vulnerable populations. The program was originally added so that hospitals could treat underserved communities and help them stretch their resources. To learn more about Dollar For: https://dollarfor.org To learn more about Patients Rising: https://www.patientsrising.org/event/midday-masterclass-340b-in-focus-history-impacts-and-state-level-realities/ Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Rare Disease Ph.D. Beth Vanstone and Laura Bonnell 27:39

för 17 weeks sedan27:39

27:39

Are titles important? As a rare disease parent, we think you're worthy of a Ph.D. Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done. As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old. Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is thanks to her efforts. Laura Bonnell and Beth Vanstone have been advocating a total of more than 50 years combined, and they're not done yet. They need your help, on any scale that works for you (small or large). Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Private Patient Advocate offers you help 31:46

för 18 weeks sedan31:46

31:46

What is a Private Patient Advocate? Do you need one? Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey. She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthiest life. She focuses on people diagnosed with cancer and rare disorders. Dr. Borrelli has worked in healthcare for over 25 years. Apart from her experiences in professional practice, she has encountered frustration and discrepancies while personally navigating the healthcare system. She has been the provider, the patient, the daughter, the sister, and the parent facing the overwhelming healthcare system; and left feeling alone and confused. Her passion is to help patients navigate the chaotic healthcare system. No one should have to do it alone. Getting a second opinion is often a good idea or enrolling in a clinical trial. Dr. Borelli research best management options for undiagnosed or chronic disease patients, as well related insurance/billing issues. Which we can all relate to! Dr. Borelli can also assist if you’re admitted to a hospital or rehab facility, and she communicates with the healthcare team and helps reduce medical errors. How to get a hold of Dr. Borelli: advocate@pathwaypa.com To hear her podcasts: https://pathwaypa.com/podcast/ Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Running a marathon with CF: Dylan Mortimer 35:10

för 19 weeks sedan35:10

35:10

Dylan Mortimer did the NYC Marathon. If you know him, you know that he had two double lung transplants. One in 2017 and one two years later in 2019. His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk, pre-transplant. It so touching as Dylan chairs his story with us. I appreciate all the ways Dylan continues to inspire our CF Community. Our last question is: will he do another one? What do you think he might say? Also, I bet we might see some of his well-known glittery artwork featuring some running in the future. We can only hope! Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

Living With Cystic Fibrosis

1
Partnership to Improve Patient Care: legislation explained! 43:51

för 21 weeks sedan43:51

43:51

Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand. They both work for the Partnership to Improve Patient Care, or PIPC (a coalition). Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is the Deputy Director. Sara, an attorney, joined PIPC in 2011 and serves at the firm, Thom Run Partners. Sara focuses policies to advance a patient centered health system, from patient engagement in research to driving outcomes that matter to patients in healthcare payment and delivery. Sara is a healthcare and welfare policy expert with over 25 years of experience, beginning her career on Capitol Hill working for former Senator John Breaux (D-LA) from 1996-2003, and later as an attorney at the law firm Patton Boggs. Thayer joined PIPC in 2019. Thayer works with PIPC’s diverse membership of patients, healthcare providers, researchers, and other groups to ensure that patient centricity is at the core of the nation’s health care system. Thayer has expertise in health care value assessments and their implications on patients and people with disabilities and continues to engage in this topic both at the Federal and State level. Chair of PIPC: (From their website) Tony Coelho is a former United States congressman from California, and primary author and sponsor of the Americans with Disabilities Act. Tony was elected to Congress in 1978 and served for six terms until 1989. He served on the Agriculture, Interior, Veterans Affairs, and Administration Committees during his tenure, specializing in disabled rights. In 1986, Tony was elected House Majority Whip. As the chief vote counter for his party, Tony oversaw a series of Democratic victories in the House on measures ranging from the budget to cutting off funds for the war in Central America. Tony was the original author of the Americans with Disabilities Act, signed into law by President George H.W. Bush. By 1994, the U.S. Census Bureau reported that some 800,000 more people with severe disabilities had found employment than were employed when the bill was first enacted. Tony currently serves as the DNC Disability Council Chair, seeking to ensure that the political process is accessible to people with disabilities. President Bill Clinton appointed Tony to serve as Chairman of the President’s Committee on Employment of People with Disabilities, a position he held from 1994 to 2001. He also served as Vice Chair of the National Task Force on Employment of Adults with Disabilities. In 1998, Clinton appointed Tony as the United States Commissioner General at the 1998 World Expo in Portugal. Clinton also appointed Tony as Co-Chair to the U.S. Census Monitoring Board, a position he held until his appointment as general chairman of the Gore presidential campaign. Sara and PIPC work with nonprofit organizations, like The Bonnell Foundation to help us to understand and keep track of all the legislation on the books, and coming down the pipeline. To contact PIPC go to: https://www.pipcpatients.org To find PIPC on social media check them out at: @PIPCpatients (on twitter and LinkedIn) Another resource Sara and Thayer suggest: https://www.patientaccessproject.org Acronym's used during this podcast: Prescription Drug Affordability Board (PDAB) Rare Disease Advisory Council (RDAC) National Association for State Health Policy (NASHP) Institute for Economic and Clinical Review (ICER) Equal Value of Life Year Gained (EVLYG) HR 485 Protecting Healthcare for all Patients Act Read it here: https://www.congress.gov/bill/118th-congress/house-bill/485 Please like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website: https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris: https://www.viatris.com/en…

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Liknande Living With Cystic Fibrosis

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Living With Cystic Fibrosis « »
CF in Brazil, and one outstanding advocate