HemoStories Podcast

Hosted By: Holly Olsen

Guest: Isidro Montero of Costa Rica

In this short episode of HemoStories, Holly interviews Isidro Montero in San Jose, Costa Rica. Isidro is the secretary of the Hemophilia Association of Costa Rica. The mission of the association is “to ensure better health and quality of life for Costa Rican people with hemophilia”. Listen as Isidro shares his involvement and experiences with the bleeding disorder community in Costa Rica.

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing to the podcast, following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Carole Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

Hosted By: Holly Olsen

Guests: Marisol de Monteroso and Dr Faviola Valbert

Join Holly as she interviews Marisol de Monterosa, President of the Hemophilia Association in Guatemala, and Dr Faviola Valbert, a hematologist in Guatemala. Marisol tells us of her unexpected introduction to hemophilia when her son was diagnosed at the age of three; her feelings of isolation; her founding of the Hemophilia Association in Guatemala; and work she does for hemophiliacs in her country. Dr Faviola Valbert shares the sad realities of having hemophilia in Guatemala where medical issues are only the beginning of the problem. Politics, finances and even a diagnosis are major limiting factors to the health and well-being of those with bleeding disorders. Together Marisol and Dr Valbert tell about the Center that brought them together and the effort they are making to make life better for those in Guatemala with hemophilia.

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Carole Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

Haydée Benoit de García, of the Dominican Republic, used her son’s diagnosis with Severe Hemophilia A as motivation to empower her entire country with knowledge and information about bleeding disorders. From what had once been an isolating experience for the hundreds in the Dominican Republic with Hemophilia (diagnosed or not), came a community filled with hope and optimism. Listen to her story to learn about the partnership of hemophiliacs, parents, and medical providers within the Dominican Republic with those outside the country, including the World Hemophilia Foundation. United, they support those in the Dominican Republic with donations of time, money, education, supplies and product. It’s a beautiful team which was made possible by the efforts of one woman motivated by the desire to help and to improve the lives of others.

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Caroleen Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

In this episode of HemoStories, Holly Olsen speaks with Miguel Izquierdo in Mexico City. Himself a hemophiliac, Miguel Izquierdo understands the challenges of diagnosis and treatment. As the president of the Directive Board of the Mexican Federation of Hemophilia, he advocates for proper health care for thousands of hemophiliacs in Mexico. The group deals with insurance complications, cultural stigma, and maintaining quality of life.

Hosted by: Josie Olsen 

Guest: Rick Kelly

Join Josie Olsen and her husband, Rick Kelly, in this HemoStories episode as they recap new HemoHelper research which debuted at the 2016 World Federation of Hemophilia World Congress in Orlando, Florida last month. At this event Rick presented a poster about his research on the relationship between healthcare infrastructure within a country and the measured prevalence of Hemophilia A. Rick gives a description of his research and future research opportunities. Listeners will also learn the differences between various hemophilia-related conferences (such as NHF and WFH) and reasons you may want to attend.

To access the data on Rick’s research, as well as an interactive workbook, go to HemoHelper.com/data

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Carole Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

In this episode of the HemoStories Podcast, Josie interviews  Linda Wright, a Factor 1 deficient member of the bleeding disorders community. Linda has afibrinogenemia, which means her liver manufactures no fibrinogen. Josie first became acquainted with Linda when searching online for others with afibrinogenemia like her son, Forrest. 

This is the first in a series of interviews covering the whole spectrum of bleeding disorders. Linda’s long history and extensive involvement in the bleeding disorders community will be as interesting to listen to as her 67 year personal experience with afibrinogenemia. 

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Caroleen Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

Hosted by: Rick Kelly Guest: Rich Pezzillo 

In this episode of the HemoStories Podcast, Rick interviews the new Executive Director of the New England Hemophilia Association, Rich Pezzillo. Prior to his role at NEHA, Rich was the Communications Director at Hemophilia Federation of America and a staffer in the United States Senate. Rich resides in Rhode Island and has a family history with hemophilia that has affected his life and the lives of his family members.

Rick and Rich discuss lessons learned growing up with hemophilia, plans for the New England Hemophilia Association and the future of hemophilia.

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Caroleen Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Caroleen Kelly for editing, and to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.

Hosted by: Joslyn Olsen  Guest: Maria DaSilva

In this episode of the HemoStories Podcast, Josie interviews her good friend and HemoHelper advisory board member, Maria Da Silva.  Born and raised in Brazil, Maria now lives in Connecticut, and has a deep and broad history with hemophilia that has affected her life and the lives of extended family members.

Knowing that she was a carrier since the time she was little, losing her father to AIDS in 1988, and later having her own son with hemophilia, Maria's story is one of heartache, loss, love, and hope. Together, Maria and Joslyn inform listeners of the complications that have frequently accompanied those who live with hemophilia. They also discuss the difficulty of diagnosis and treatment in developing countries. Maria’s familiarity with hemophilia inspires her to appreciate medical progress and motivates her to help others.

If you like what you hear, please consider rating us on iTunes, donating to the cause, subscribing,  following us on social media (@hemohelper), and liking our HemoHelper Facebook Page. 

Special thanks to Mason Morris from SLC, UT for writing the theme song, “Just Smile,” which was written as an optimistic reminder that there is hope for a cure and a bright future in the hemophilia world.