Shows
Rare Disease DiscussionsConsider Rare: Suspecting and Diagnosing Fibrodysplasia Ossificans Progressiva (FOP)Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disorder characterized by abnormal bone development. Most babies with FOP appear normal and healthy at birth with one exception—the appearance of deformed big toes. Unfortunately, this common deformity can be attributed to other causes. This can result in a delay of years before a person is diagnosed with FOP properly. This educational webinar, hosted by Ellen Elias, MD, Professor, Pediatrics and Genetics, University of Colorado School of Medicine, and Christiaan Scott, MD, Professor of Medicine at the University of Ottawa, examines best practices to suspect and diagnose this ultra-rare condition.2025-05-0552 min
IFOPA Podcast SeriesInsights on Access from the Rare Disease Community2023-10-1231 min
IFOPA Podcast SeriesVocational Rehab as a Funding SourceAs part of the 2022-2023 Advocacy Series, we have been learning about various types of accessible transportation, both public and personal. One of the biggest obstacles to personal transportation is usually cost. In this IFOPA podcast, listen to FOP community member Steve Eichner explain the process of accessing financial assistance from Vocational Rehabilitation programs (available in the US) to help pay for certain vehicle modifications for employed individuals with a disability who need transportation to and from their jobs.2023-09-2831 min
IFOPA Podcast SeriesA Sneak Peak at the 2023 FOP Family GatheringFOP community members Emma Albee (Adult with FOP, Maine), Tiffanie Williams (Mom, Texas), and Daniel Williams (Teen with FOP, Texas) join Family Services Manager, Hope Newport in a discussion of all things Family Gathering. Their conversation shares insight on highlights from past Family Gatherings and what to look forward to for the 2023 event taking place in Dallas, Texas, and online! 2023-09-2623 minIFOPA Podcast SeriesEmpowering the CaregiverBeing an empowered caregiver creates a supportive space for the person providing care and the individual with FOP. This discussion highlights how fellow community members have partnered with their loved ones to lead by example and create a family philosophy that encourages a realistic approach to facing challenges and overcoming them as a family. Panelists include Barb Rossano (mother of adult community member Laura Rossano), David Robins (father of youth community member Lexi Robins) and Nancy Eichner (spouse of adult community member Steve Eichner.) This discussion will include the following topics: Working together with your...2022-11-301h 02
IFOPA Podcast SeriesEmpowering the CaregiverBeing an empowered caregiver creates a supportive space for the person providing care and the individual with FOP. This discussion highlights how fellow community members have partnered with their loved ones to lead by example and create a family philosophy that encourages a realistic approach to facing challenges and overcoming them as a family. Panelists include Barb Rossano (mother of adult community member Laura Rossano), David Robins (father of youth community member Lexi Robins) and Nancy Eichner (spouse of adult community member Steve Eichner.) This discussion will include the following topics: Working together with your...2022-11-301h 02IFOPA Podcast SeriesSupporting the CaregiverWe've all heard the saying it takes a village...hear from members of the FOP community who share how they've found their village and the support they needed to take care of themselves AND their loved one with FOP. Panelists include Amy Gordon (mother of a youth community member Zip Gordon), Kim Hanf (mother of community member Tyler Hanf) and Tiffanie Williams (mother of youth community member Daniel Williams.) In our conversation we discuss the following topics: How they found support in the immediate family, extended friend group and community level How to effectively communicate with...2022-11-2956 minIFOPA Podcast SeriesSupporting the CaregiverWe've all heard the saying it takes a village...hear from members of the FOP community who share how they've found their village and the support they needed to take care of themselves AND their loved one with FOP. Panelists include Amy Gordon (mother of a youth community member Zip Gordon), Kim Hanf (mother of community member Tyler Hanf) and Tiffanie Williams (mother of youth community member Daniel Williams.) In our conversation we discuss the following topics: How they found support in the immediate family, extended friend group and community level How to effectively communicate with...2022-11-2956 minIFOPA Podcast SeriesFOP is a Part of My Life, but it Isn't My LifeIn our second episode of the 2022 Advocacy Series, IFOPA Family Services Manager, Hope Newport speaks with FOP community member, Laura Rossano about her journey through college to her current career field. Laura shares her mentality for facing the challenges of life with FOP and how she can now support other individuals with disabilities as they traverse their own career journeys.2022-05-0545 minIFOPA Podcast SeriesFOP is a Part of My Life, but it Isn't My LifeIn our second episode of the 2022 Advocacy Series, IFOPA Family Services Manager, Hope Newport speaks with FOP community member, Laura Rossano about her journey through college to her current career field. Laura shares her mentality for facing the challenges of life with FOP and how she can now support other individuals with disabilities as they traverse their own career journeys.2022-05-0545 minIFOPA Podcast SeriesCollege, Careers and Pursuing a VocationFOP community member Whitney Weldon speaks about her motivation to attend college, what she's learned in her career journey so far and how she's navigated the challenges FOP and Covid lay in her path. 2022-04-1326 minIFOPA Podcast SeriesCollege, Careers and Pursuing a VocationFOP community member Whitney Weldon speaks about her motivation to attend college, what she's learned in her career journey so far and how she's navigated the challenges FOP and Covid lay in her path. 2022-04-1326 min
Be the DreamSeeking Sunshine in FOP with Cassie EckartJoin us as we listen to Cassie's amazing story. Diagnosed with a super rare, life-changing disease at a young age, she has remained hopeful and positive through every challenge that has come her way.
-Learn more about FOP at https://www.focusonfop.com/en-us/know-fop/?utm_id=0015&utm_source=google&utm_medium=cpc&utm_campaign=FOP+Disease&utm_content=fop+generic&utm_term=fop&gclid=Cj0KCQiA7oyNBhDiARIsADtGRZbFJ-qO1g_ChwEc8ZliPqe7KPO6AihKxDiXboIA5kdXt_Obh7xE8kcaAqK_EALw_wcB&gclsrc=aw.ds
-Learn more about Cassie's story at https://www.ifopa.org/meet_fop_connect_m...2021-11-2925 min
IFOPA Podcast SeriesAdvocating for Mobility and IndependenceIn our fourth episode of the 2021 Advocacy Series, IFOPA Family Services Coordinator Karen Kirchhoff speaks with FOP mom Lisa Gillooly about her experiences advocating for her daughter Sara's equipment needs. Lisa shares stories of Sara's early exposure to tools, the trials and errors of finding tools that worked, and how the family made including Sara in family and community activities a priority. As Sara grew older and FOP began to limit her mobility more, Lisa reflects on the ups and downs they went through learning to navigate the healthcare system for access to more advanced equipment that Sara needed.2021-11-0137 min
IFOPA Podcast SeriesAdvocating for Mobility and IndependenceIn our fourth episode of the 2021 Advocacy Series, IFOPA Family Services Coordinator Karen Kirchhoff speaks with FOP mom Lisa Gillooly about her experiences advocating for her daughter Sara's equipment needs. Lisa shares stories of Sara's early exposure to tools, the trials and errors of finding tools that worked, and how the family made including Sara in family and community activities a priority. As Sara grew older and FOP began to limit her mobility more, Lisa reflects on the ups and downs they went through learning to navigate the healthcare system for access to more advanced equipment that Sara needed.2021-11-0137 min
IFOPA Podcast SeriesFeel It to Heal ItIn this episode Sharon Neumann, Advanced Grief Recovery Specialist and IFOPA Family Services Manager Hope Newport explore grief throughout the FOP journey, supporting children in their grief and ways to begin to process grief on your own.2021-08-1340 min
IFOPA Podcast SeriesFeel It to Heal ItIn this episode Sharon Neumann, Advanced Grief Recovery Specialist and IFOPA Family Services Manager Hope Newport explore grief throughout the FOP journey, supporting children in their grief and ways to begin to process grief on your own.2021-08-1340 min
IFOPA Podcast SeriesAdvocating in the Medical SettingIn our third episode of the 2021 Advocacy Series, IFOPA Family Services Manager Hope Newport speaks with FOP medical expert Dr. Ed Hsiao of the University of California San Francisco about the best steps to take in creating and supporting a team to address your needs in the medical setting. Dr. Hsiao speaks to the responsibilities of the patient and the various key contributors on your multidisciplinary care team.2021-07-1635 min
IFOPA Podcast SeriesAdvocating in the Medical SettingIn our third episode of the 2021 Advocacy Series, IFOPA Family Services Manager Hope Newport speaks with FOP medical expert Dr. Ed Hsiao of the University of California San Francisco about the best steps to take in creating and supporting a team to address your needs in the medical setting. Dr. Hsiao speaks to the responsibilities of the patient and the various key contributors on your multidisciplinary care team.2021-07-1635 min
IFOPA Podcast SeriesYour Personal FOP Journey—Why It’s So Important for FOP ResearchIFOPA Executive Director Michelle Davis chats with Sammi Kile, IFOPA's FOP Registry Project Manager about the FOP Registry and how FOP patients around the world are making significant contributions to FOP research through telling their FOP story. They'll also provide a refresher on how and when to participate and get technical assistance.2021-07-0124 min
IFOPA Podcast SeriesYour Personal FOP Journey—Why It’s So Important for FOP ResearchIFOPA Executive Director Michelle Davis chats with Sammi Kile, IFOPA's FOP Registry Project Manager about the FOP Registry and how FOP patients around the world are making significant contributions to FOP research through telling their FOP story. They'll also provide a refresher on how and when to participate and get technical assistance.2021-07-0124 min
IFOPA Podcast SeriesFighting FOP in the Land of the Midnight SunIn the May episode of the IFOPA Podcast Series, IFOPA Community Fundraising Manager Cathryn Roys chats with FOP advocate Lucy Mae McConnell about a special annual fundraiser she helped develop and organizes each year to raise money for FOP research. Hear how a small village in one of the most remote places on Earth rallies to support Midnight Sun Color Run every summer in the Land of the Midnight Sun.2021-05-0621 min
IFOPA Podcast SeriesFighting FOP in the Land of the Midnight SunIn the May episode of the IFOPA Podcast Series, IFOPA Community Fundraising Manager Cathryn Roys chats with FOP advocate Lucy Mae McConnell about a special annual fundraiser she helped develop and organizes each year to raise money for FOP research. Hear how a small village in one of the most remote places on Earth rallies to support Midnight Sun Color Run every summer in the Land of the Midnight Sun.2021-05-0621 minIFOPA Podcast SeriesAdvocacy At All AgesIn our second podcast of the 2021 Advocacy Series, IFOPA Family Services Coordinator Karen Kirchhoff interviews Amanda Cali, FOP mom, Advisor to the Tin Soldiers Program, Trustee of the Radiant Hope Foundation and Executive Associate on the International Clinical Council on FOP (ICC). Amanda candidly speaks about her experiences raising a child with FOP and shares the parenting strategies she used to empower her children to ensure they grew up with a self-sufficient mindset and were prepared to live successfully on their own. Amanda also discusses different opportunities she gave her sons at different ages (child, teen and young adult...2021-04-1927 minIFOPA Podcast SeriesAdvocacy At All AgesIn our second podcast of the 2021 Advocacy Series, IFOPA Family Services Coordinator Karen Kirchhoff interviews Amanda Cali, FOP mom, Advisor to the Tin Soldiers Program, Trustee of the Radiant Hope Foundation and Executive Associate on the International Clinical Council on FOP (ICC). Amanda candidly speaks about her experiences raising a child with FOP and shares the parenting strategies she used to empower her children to ensure they grew up with a self-sufficient mindset and were prepared to live successfully on their own. Amanda also discusses different opportunities she gave her sons at different ages (child, teen and young adult...2021-04-1927 min
IFOPA Podcast SeriesOh yes, Honey!Turning hobbies and passions into a fundraising opportunity is the easiest way to raise money for FOP research and family education and support programs. Learn how FOP mom Tiffanie Williams did just that and get the buzz on her sweet fundraising and awareness project.2021-03-0526 min
IFOPA Podcast SeriesOh yes, Honey!Turning hobbies and passions into a fundraising opportunity is the easiest way to raise money for FOP research and family education and support programs. Learn how FOP mom Tiffanie Williams did just that and get the buzz on her sweet fundraising and awareness project.2021-03-0526 min
IFOPA Podcast SeriesCreating a Story with ImpactIn our February episode of the IFOPA podcast series, IFOPA Family Services staff Hope Newport interviews Shannon von Felden, Rare Disease Legislative Advocates and Katie Burns, SmithSolve to discuss why it's important to share your rare disease experience, what to keep in mind when speaking to others and two programs which were established to support the rare community in using their words as a vehicle for creating change. FOP community members residing in the United States can participate in the following programs Learn more about the Fast Forward for Rare Program by visiting their website Sign up to participate in R...2021-02-2220 min
IFOPA Podcast SeriesCreating a Story with ImpactIn our February episode of the IFOPA podcast series, IFOPA Family Services staff Hope Newport interviews Shannon von Felden, Rare Disease Legislative Advocates and Katie Burns, SmithSolve to discuss why it's important to share your rare disease experience, what to keep in mind when speaking to others and two programs which were established to support the rare community in using their words as a vehicle for creating change. FOP community members residing in the United States can participate in the following programs Learn more about the Fast Forward for Rare Program by visiting their website Sign up to participate in R...2021-02-2220 min
IFOPA Podcast SeriesAdvocacy: You Can Make A DifferenceIn this first episode of the Advocacy Series podcast, IFOPA Family Services staff Hope Newport and Karen Kirchhoff discuss what advocacy means, the different types of advocacy and 10 skills to becoming an effective advocate. 2021-02-1130 min
IFOPA Podcast SeriesAdvocacy: You Can Make A DifferenceIn this first episode of the Advocacy Series podcast, IFOPA Family Services staff Hope Newport and Karen Kirchhoff discuss what advocacy means, the different types of advocacy and 10 skills to becoming an effective advocate. 2021-02-1130 min
The Treasury Career CornerSteps to Treasury Success with Gary McGuireWe’re celebrating 100 episodes of The Treasury Career Corner podcast, which is an incredible milestone and we’re so grateful for each of our guests and those of you who listen in each week. To celebrate 100 episodes of the show, I’m joined by superstar VP and Treasurer of Dow Inc., Gary McGuire.Gary leads a global team of over 100 treasury professionals managing all aspects of Dow’s finances which include Funding, Operations, Planning, Customer Financial Services, Insurance, Pension, Financial Risk Management, Compliance, Corporate Real Estate, and Enterprise Wide Risk Management. Gary is President and CEO of Liana Li...2020-05-1234 min
KC Cares OnlineRare Diseases | KC Cares Episode 373Kansas City’s Nonprofit Voice! Sharing the stories of local nonprofits and connecting them with the community! We talk with philanthropists, volunteers, community activists, executive directors, and non-profit lovers from the Kansas City nonprofit community. Be seen, be heard with KC Cares! Kansas City’s Nonprofit Voice! On episode 373 of KC Cares, we talk with Michelle Davis, Executive Director with International Fibrodysplasia ossificans progressiva Association! Great discussion about rare diseases! Listen now! ••••••••••••••••••••••••••••••• International Fibrodysplasia ossificans progressiva Association | Sat Feb 15 2020 Michelle Davis, Executive Director and Kelly Ranallo, President with RareKC/Turner Syndrome Global Alliance The IFOPA is a 501c3 nonprof...2020-03-0416 min
RARECastA Patient Group Crafts Guidelines for Working with PharmaPatient organizations have long been working with biopharmaceutical companies, but as they have grown more sophisticated about their interactions, they are coming to understand the value in laying out the ground rules for these relationships. Last year, the International Fibrodysplasia Ossificans Progressiva Association, or IFOPA, took the unusual step to craft a set of guidelines for the organization regarding how it engages with the pharmaceutical industry. It made these guidelines public and continues to refine them. We spoke to Betsy Bogard, chair of the IFOPA research committee, about why the organization created the guidelines, how they have affected interactions between...2017-08-3017 min
RARECastHow One Rare Disease Group Leverages Relationships with IndustryThe International Fibrodysplasia Ossificans Progressiva Association focuses on a rare genetic disorder, but it has had great success in stimulating research, engaging with industry, and helping advance needed therapies. We spoke to Betsy Bogard, global research development director for the IFOPA, about FOP, how her organization has helped drive work toward new treatments, and what it’s learned about how to best work with industry partners.2016-08-1718 min