Non-profit organizations couldn’t function without the critical work of VOLUNTEERS. Whether on the national or local level, volunteers help communities CONNECT. Volunteers serve on boards of directors, chair committees to organize fundraisers and events, stuff mailers to potential donors, and even set up tables and chairs for events. They do it all! That’s why the mighty VOLUNTEER is the focus of Episode 19 of the Ask the Expert podcast.
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
Summer is already coming to a close and for many families that means their kids are heading back to school or off to college. It’s an exciting time, but what if you aren’t ready for college or you don’t feel like that’s the right path for you? How do you go about finding a career that fits your life with a bleeding disorder and how do you approach the challenges of applying and interviewing for those jobs? That’s what we are going to discuss on our Career Counselor episode of Ask the Expert podcast, with special guest Don Molter!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
Mental illness in the bleeding disorders community is a challenging topic to discuss, but given that approximately one-third of people with a chronic illness experience symptoms of depression, it’s clearly a topic in need of more attention. This month’s guest is Debbie de le Riva, community advocate and social worker. She joins host Chris Bombardier and guest co-host Patrick James Lynch for an open and honest discussion about depression, mental illness, and suicide prevention in the bleeding disorders community, and the work that she’s doing to make an impact.
NotOk app: https://www.notokapp.com/
Research Articles:
Journal of Blood Medicine: Sue duTreil: Physical and psychosocial challenges in adult hemophilia patients with inhibitors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4114907/
Haemophilia: Iannone M, Pennick L, Tom A, Cui H, Gilbert M, Weihs K, Stopeck AT: Prevalence of depression in adults with haemophilia. https://www.ncbi.nlm.nih.gov/pubmed/22642565
HERO Study: http://www.herostudy.org/
Suicide Prevention Hotline: 1-800-273-TALK (8255) https://suicidepreventionlifeline.org/
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
One of the easiest ways to keep our bodies healthy on a day to day basis is by eating well, but it’s also one of the hardest commitments to make. After a long hard day of work or school, it’s so easy to swing into a fast food restaurant or pop in a frozen pizza, even when we know we should go for something healthier. On today's podcast we will be exploring some of the myths around nutrition, tips for how to make healthy eating easier, and what effect food has on bleeding disorders. Our guest on Episode 16 of ‘Ask the Expert’ is Tracy Mann, a registered dietician and founder of Everyday Nutrition, LLC, who shares with us some easy and helpful ways to eat and feel better!
Everyday Nutrition, LLC.
https://www.everydaynutritionllc.com/
Choose my Plate: Guide to helping you eat a more balanced diet.
https://www.choosemyplate.gov/MyPlate
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
In many developing countries, children that are born with chronic medical conditions are placed in orphanages. With limited hope for care in these situations one of the best hopes for these children is to be adopted. In this month’s Ask The Expert episode, we visit with Shari Luckey, the Adoption Advocacy and Outreach Coordinator for the Hemophilia Foundation of Michigan. Shari not only has personal experience adopting a child with hemophilia from a developing country but also works with individuals around the country to help them navigate the challenge adoption system. We explore her personal journey through adoption and learn about what the overall adoption process looks like. We also touch on the unique challenges this presents when the adopted child has a chronic medical condition.
To contact Shari, please visit the website below.
https://www.hfmich.org/what-we-do-adoption/
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
There are many different healthcare providers that make up the the comprehensive care model at hemophilia treatment centers around the United States and much of the developed world. Physicians, nurses, social workers, physical therapists and many other healthcare professionals are all crucial team members in this model and can help individuals throughout their lifetime. Today for ‘Ask the Expert’, we will be focusing on the role of physical therapists in the care of individuals with bleeding disorders, how that has evolved in the decades since prophylactic treatment has become more common and what some of the new research shows in the bleeding disorders community. Episode 14, our physical therapy episode of the podcast features special guest Sharon Funk. Sharon Funk has been working as a physical therapist with the University of Colorado Hemophilia and Thrombosis Center for 41 years and has been a pioneer in the field of physical therapy and bleeding disorders.
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
The concept of gene therapy has been floating around the hemophilia community for decades, but with recent success in clinical trials, we appear to be getting closer to having an FDA approved treatment. In this episode, we focus on understanding terminology and types of gene therapy, potential benefits and pitfalls, and the role of factor in a gene therapy world. Our expert for this month’s episode is Dr. Marilyn Manco-Johnson, Director of the University of Colorado Hemophilia and Thrombosis Center, who helps us get a better understanding of what gene therapy is and where the current technology stands. Welcome to Episode 13 - or our Gene Therapy Episode - of the Ask The Expert Podcast!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
Advocacy has long been a hot topic in the bleeding disorders community, but beyond office visits with state and federal legislators, what does it actually entail? If you have ever wondered about how you can become or grow as an advocate, this episode is for you! In this month’s episode of the Ask The Expert Podcast we catch up with Rich Pezzillo, Executive Director of the New England Hemophilia Association (NEHA) and long-time community advocate, who speaks about the many different ways we can be advocates. Welcome to Episode 12 - or our Community Advocates Episode - of the Ask The Expert Podcast!
Follow the link below and click the ‘Receive our Newsletter’ link to receive updates regarding healthcare updates referenced by Rich Pezzillo
http://www.hemophiliafed.org/advocacy/
Registration for the National Hemophilia Foundation's Washington Days:
https://www.hemophilia.org/Events-Educational-Programs/Washington-Days
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
The management of inhibitors continues to be one of the greatest challenges facing researchers, clinicians, and patients with hemophilia. Thankfully we seem to have taken a giant step forward vis-a-vie the introduction of Hemlibra, the first and only subcutaneous treatment option for patients of all ages who have severe hemophilia A and inhibitors. But what exactly is this form of non-factor replacement therapy? How does it work? And what should patients and families impacted by hemophilia and inhibitors be thinking and asking their clinicians about? That’s what we’re here to discuss with this month’s guest, Dr. Guy Young. Welcome to Episode 11 - or our Inhibitors and New Therapies Episode - of the Ask The Expert Podcast!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
Link to Guy Young Interview Transcript
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
For the last 27 years, Laurie Kelley has dedicated herself to educating and improving the lives of families impacted by hemophilia, hemophilia and inhibitors, and von willebrand disease, both here in the United States and internationally throughout the developing world. So as we say goodbye to 2017 and hello to 2018, what are some of the major considerations for our community both domestically and global? That’s what we’re here to discuss with this month’s guest, Laurie Kelley. Welcome to Episode 10 - or, our Bleeding Disorders Across The Globe Episode - of the Ask The Expert Podcast!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
“I can’t do that.” “That’s not for me.” “I’m not able to do that.” Thinking about the outdoors and outdoor activities can be intimidating for people living with a bleeding disorder. But should they be? Are the outdoors and experiential education in the outdoors really off-limits to people with bleeding disorders? That’s what we’re here discuss with this month’s guest, GutMonkey Founder and CEO, Pat Torrey, on Episode 9 - or, our Outdoor Education Episode - of The Ask The Expert Podcast!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
Check out more of our podcasts on BloodStream Media
Food, family, food, travel, more food, money, more food still- the holidays can be a really stressful time! On this episode, social worker Eric Iglewski from the Mary M. Gooley Hemophilia Center in Rochester, New York joins Ask The Expert to talk through important considerations for people with bleeding disorders to keep in mind as we rapidly approach the wonderful chaos that is the holiday season! Welcome to Episode 8 of the Ask The Expert podcast!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
In this episode Randy Curtis, the Hemophilia Council of California’s Board President and longtime community activist, joins Ask The Expert to answer questions on aging with hemophilia, and the how he and peers in the Baby Boomer and Generation-X populations view this historic point in treatment history. We address that, and more, on Episode 7 of BloodStream Media’s Ask The Expert podcast series!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
Randy Curtis’ biography on the Hemophilia Council of California’s website.
PROBE-ing Patients with Hemophilia from NHF’s Hemaware.
Haemophilia Utilization Group Study: assessment of functional health status in hemophilia.
In this episode Carrie Koenig, the Hemophilia Federation of America’s (HFA) Families Program Manager, identifies the most important considerations for parents and families preparing for back-to-school season. What should parents of children with bleeding disorders be thinking about? What resources are available to help parents prepare? How active should kids be in advocating for themselves with teachers, administrators, and classmates? We address these questions and many more on Episode 6 of BloodStream Media’s Ask The Expert podcast series!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Hemophilia Federation of America’s (HFA’s) Back-To-School Toolkit
Learn more about 504 plans from HFA.
Special thanks to the Texas Bleeding Disorders Conference for allowing us to record Ask The Expert questions with community members during their August 2017 meeting.
Transitioning to a new school LINK
Tips and Recommendations for kids with bleeding disorders to share with their schools LINK
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
In this episode, Dr. Steven Pipe, a pediatric hematologist out of the University of Michigan who is also the chair of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) discusses the major takeaways from the International Society of Thrombosis and Hemostasis’ (ISTH) 2017 Congress, which took place this July in Berlin, Germany. Dr. Pipe shares the latest updates on non-factor replacement therapies, gene therapy, and more on Episode 5 of BloodStream Media’s Ask The Expert podcast series!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)
ISTH Congress 2017 Headlines:
BioMarin and Spark: http://www.biopharmadive.com/news/hemophilia-ISTH-spark-alnylam-gene-therapy-biomarin/446849/
Emicizumab: https://www.dddmag.com/article/2017/07/positive-results-emicizumab-phase-iii-studies-hemophilia-inhibitors
Q&A with R&D chief of Bioverativ: https://www.dddmag.com/article/2017/07/bioverativ-r-d-chief-breaks-down-data-blood-disorder-drug-pipeline
Steven Pipe presents small molecule therapies: http://isthcongressdaily.org/novel-therapies-hemophilia-small-molecules-treatment-hemophilia/
In this episode, Katie Verb, the Director of Policy and Government Relations for the Hemophilia Federation of America, answers questions on health care legislation, advocacy, and the extraordinarily-troubling Better Care Reconciliation Act (BCRA) that has been drafted by Senate Republicans in an unprecedented and lightning-fast manner. What could the BCRA mean for our community and Americans at large, and what should we be doing about it? Find out on Episode 4 of BloodStream Media’s Ask The Expert podcast series!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Links of Interest:
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:
In this episode Dr. Robert Sidonio, an Assistant Clinical Professor of Pediatrics at Emory University Hospital and the Clinical Director of Hemostasis/Thrombosis at the Children’s Hospital of Atlanta, answers questions on and about women with bleeding disorders. Dr. Sidonio is a leading expert in the treatment and management of women with bleeding disorders, and addresses topics such as common challenges, research gaps, and encouraging trends in Episode 3 of BloodStream Media’s Ask The Expert podcast series!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Links of Interest
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:
In this episode, pediatric hematologist Dr. Arash Mahajerin is back to answer listener-submitted questions on the future of portacaths for kids with hemophilia, what to do when mysterious bruising or joint pain begins to show, and marijuana- is it a legitimate form of medication, or not? His answers to those questions, and more, on Episode 2 of BloodStream Media’s Ask The Expert podcast series!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment.
Links of Interest
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:
In this - our first! - episode, Dr. Arash Mahajerin, a pediatric hematologist at the Children's Hospital of Orange County (California) and Assistant Clinical Professor at the University of California, Irvine, answers listener-submitted questions about all things bleeding disorders in the first episode of BloodStream Media's Ask The Expert podcast series. Subscribe to Ask The Expert and check out BloodStream Media's other podcasts at BloodStreamMedia.com.
Interested in learning more about clinical trials? Check out ClinicalTrials.gov.
Have a question you would like to ask an expert (on bleeding disorders)? You're in luck! Email mailbag@bloodstreampod.com.