Podcasts about immune deficiency foundation

Celebrity gossip magazines love to remind us: "Stars — they're just like us!" And while the world of digital creators and streamers can feel like a distant universe, the truth is that these online personalities aren't so different from the rest of us.As P2P fundraising increasingly intersects with the creator community, it's easy to view streamers and influencers as fundamentally different from traditional participants. But while they may bring unique visions, massive reach, and unfamiliar platforms to the table, their core needs remain the same: support, motivation, impact, and authentic relationships.In this episode, P2PPF's Marcie Maxwell chats with two nonprofit pros who've successfully navigated this space — Aimee Yrlas-Simpson, Chief Development Officer, and Angela Ridenour, Development Manager at the Immune Deficiency Foundation. IDF's journey into the creator world began when they connected with global streamer Ironmouse, who also happens to be a member of the primary immunodeficiency community.Together, we'll explore:The key differences and surprising similarities between content creators and traditional P2P fundraisersStrategies for cultivating relationships in a digital-first landscapeHow to build mutually beneficial, mission-aligned partnerships with content creatorsMentioned LinksPrimaryimmune.org https://primaryimmune.org/get-involved/raise-awareness-and-funds-idf/diy-gaming Plasmahero.org Stay Connected on LinkedInConnect with AimeeConnect with AngelaConnect with MarcieConnect with the Peer-to-Peer Professional Forum (00:00) - Welcome to The P2P Soap Box (05:59) - Launching Into Streaming

In this episode, we dive into the evolving landscape of peer-to-peer fundraising and ask some provocative questions: Should we still organize fundraising efforts around traditional formats like walks, runs, and rides? Why do those formats often make sense to nonprofit staff but fall flat with volunteers? We'll unpack the behavioral trends of different generations, explore whether DIY fundraising is the real solution, and ask the question no one seems to be asking: Why aren't we talking more about gaming and streaming? Joining us for this conversation are three fundraising powerhouses: Aimee Simpson, Chief Development Officer at the Immune Deficiency Foundation; Michael Wasserman, CEO and Co-Founder of Tiltify; and Katrina VanHuss, Founder of Turnkey For Good.

Hey Strangers, #ironmouse #kaicenat #twitch The notable Vtuber Ironmouse has become the new queen of Twitch. The streamer broke the world record for the highest number of active subscribers on Twitch on Monday. According to a widget on her channel, she now has more than 312,000 subscribers, surpassing the record previously set by Kai Cenat in Spring 2023. The creator set the new record on day 30 of a “subathon” event where she has been streaming for more than 30 days straight and raising money for the Immune Deficiency Foundation. “Words cannot express how I am feeling nor can they express my gratitude. Thank you all so much for the incredible support and thank you for changing my life,” Ironmouse said via X following the news. ======================================= My other podcast https://www.youtube.com/channel/UCKpvBEElSl1dD72Y5gtepkw ************************************************** Something Strange https://www.youtube.com/watch?v=GRjVc2TZqN4&t=4s ************************************************** article links: https://www.polygon.com/twitch/458345/ironmouse-breaks-subs-record-twitch-subathon https://medium.com/destream/top-10-biggest-donations-to-twitch-streamers-of-all-time-1b80f7b026c0 https://www.reddit.com/r/LivestreamFail/comments/8og3nj/guy_gets_donated_the_most_bits_in_a_single/ https://arazu.io/t3_18hq85u/?timeframe=all&category=hot ====================================== Today is for push-ups and Programming and I am all done doing push-ups Discord https://discord.gg/MYvNgYYFxq TikTok https://www.tiktok.com/@strangestcoder Youtube https://www.youtube.com/@codingwithstrangers Twitch https://www.twitch.tv/CodingWithStrangers Twitter https://twitter.com/strangestcoder merch Support CodingWithStrangers IRL by purchasing some merch. All merch purchases include an alert: https://streamlabs.com/codingwithstrangers/merch Github Follow my works of chaos https://github.com/codingwithstrangers Tips https://streamlabs.com/codingwithstrangers/tip Patreon patreon.com/TheStrangers Timeline 00:00 intro 00:27 What Talking We Talking About 07:11 Article 15:05 other records 21:30 my goal 23:00 outro anything else? Take Care --- Send in a voice message: https://podcasters.spotify.com/pod/show/coding-with-strangers/message

Patrick survives his first tornado warning and we've got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. To read “What are fibrinogen disorders?” PDF, CLICK HERE.    Tammy's documentary Compromised: Life without Immunity   Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   I'm Fine is presented by @SanofiUS    Listen to the Global Hemophilia Report   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Welcome to the Evolvepreneur (After Hours) Show I am your Special Host Richard Wray Join me today where we dig deep with our guests and get you the best concepts and strategies to fast-track your business. My very special guest today is Christy Wilson ... Christy is a renowned national keynote speaker and successful entrepreneur with expertise in fostering positive corporate culture, guiding leaders in business growth, and enhancing employee engagement and retention. She's a sought-after speaker at various events, including state trainings, leadership summits, and employer conferences, and has been featured in media articles and national podcasts. Christy's role as a Health Access Advocate for the Immune Deficiency Foundation involves building relationships with policymakers and promoting the IDF's legislative agenda. She also serves on advisory boards and is the CEO of multiple businesses. Notably, she founded Next Level Connected, an organization dedicated to creating career opportunities for individuals with disabilities, driven by her passion for diversity and inclusion in the workplace.

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20--%20Undiagnosed%20Episode%202.pdf A cut on the roof of your mouth. A step in a shallow puddle during a game of backyard football. Potting soil beneath your fingernails. Occurrences like these are, at worst, minor inconveniences for most of the world. However, they can lead to weeks or months of agony for some. This reality is made even harsher for someone who finds profound joy in the simplicity of growing flowers from tilled earth. Someone like Shane – who has to take extreme caution when performing the most calming of hobbies. Before being diagnosed with chronic granulomatosis disease, or CGD, Shane suffered intense, frequent infections that left him hospitalized for weeks at a time, and with a reluctant dependence on opioids. This is his story. Undiagnosed is an Immune Deficiency Foundation production. Your support of IDF helps to ensure that people like Shane get the resources, education, and community support they need to live healthier, happier lives. To learn more about PI, to volunteer, or to donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Series premiere. On average, it takes nine to fifteen years of untreated illness to be diagnosed with and treated for a Primary Immunodeficiency. Recent studies estimate that 70 - 90% of those with PI do not yet have a diagnosis. You're listening to Undiagnosed – an Immune Deficiency Foundation podcast. These are the true stories of the harrowing journey to diagnosis. Imagine an energetic young girl. As the oldest of four children under the age of five, she's the caretaker of her siblings. She's a bit of a teacher's pet, and has an inquisitive mind. She does well in school despite being constantly on the move as the daughter of a Naval officer. She's the type of child who goes ice skating in the winter and eats carrots straight from the garden. You'd likely never assume that a debilitating illness would alter every aspect of that young girl's life – because that illness is invisible to everyone but her. For that energetic young girl, much of the story of her life would be colored by missed opportunities for proper care… by a complex web of unrelated but entangled health issues that pointed to a larger problem no one would understand for more than six decades. That young girl is Sandy. This journey is hers. Your support of IDF helps to ensure that people like Sandy get the advocacy, education, and community support they deserve. To donate, volunteer, or learn more about primary immunodeficiency, visit www.primaryimmune.org. The views and opinions expressed are not necessarily those of IDF, its donors, employees, or Board of Trustees. Follow IDF on social media: YouTube: https://www.youtube.com/channel/UC-e7Jua_piexR70CVoaofYw Facebook: https://www.facebook.com/ImmuneDeficiencyFoundation/ Twitter: https://twitter.com/IDFCommunity Instagram: https://www.instagram.com/idfcommunity/?hl=en

Listen as Barb Ballard shares her long history of advocacy and innovative efforts in newborn screening.  Barb is currently the Director of SCID Angels for Life Foundation. Her involvement with the non-profit sector began after her son, Ray, born in 1994, was diagnosed at 10 ½ months old with X-Linked Severe Combined Immune Deficiency, commonly known as the Bubble Boy Disease. Barb served on the Board of Trustees for The Immune Deficiency Foundation for 18 years, where she advocated for the interests of parents, families and individuals living with immune deficiency at numerous state, and federal committees, while developing the SCID Initiative Program. While her son was hospitalized as a baby at Duke University, Barb developed the first list-serv for families of children diagnosed with SCID. Be inspired by Barb's story of perseverance, determination, and dedication in supporting families facing genetic disease.     Interview Questions with Barb Ballard:    1. What is the mission of your organization (perhaps, here you can discuss your grant and scholarship program, community engagement activities, and resources on clinical trials)?   2. Barb had a child with SCID who also touched many lives and his story directly and indirectly led to changes in the way newborns are screened, diagnosed, and treated for immune deficiencies. Can you tell our listeners about his life and your hopes for his legacy?   3. Before Ray was diagnosed with SCID were you aware of newborn screening? What do you think prospective parents should know about newborn screening – not only for SCID but other conditions?   4. Because SCID is a spectrum of different genetic variations (or changes, we used to call them mutations) and needs of patients with SCID vary drastically, how do you engage clinical research partners to understand the needs and concerns of the patient population?   5. What are some of the current efforts of SCID Angels for Life organization in disseminating information on new clinical research?   6. What role does your Facebook or other social channels help to support families whose newborn screens positive for SCID? Are there things that national groups like NIH, CDC and HRSA could be doing to support new families?   7. Your organization also currently manages three scholarship programs to support families: Family Scholarship, Travel Scholarship, and Education Scholarship. How could our listeners learn more about these programs? (perhaps you talk about the application process, deadline, qualifications)   8. You have hosted several Town Halls and other informational webinars on new information or clinical trials where the patients and their families are looking to have their questions answered directly. What are some of the common frequently asked questions?   9. What does NBS research mean to you?   To learn more about SCID Angels for Life, visit http://www.scidangelsforlife.com   If you have a story on how rare disease research has impacted your life and family, please contact NBSTRN to share your story on our podcast. Visit www.nbstrn.org  

Our guest this week is Miguel Sancho, of Larchmont, NY a journalist and an Emmy award winning TV producer. Miguel and his wife, Felicia Morton, have been married for 16 years and are the proud parents of two; Lydia (13) and Sebastian (9), who was diagnosed with CGD, Chronic Granulomatous Disease, a rare genetic disorder in which white blood cells called phagocytes are unable to kill certain types of bacteria and fungi. People with CGD are constantly at risk of developing bacterial and fungal diseases that can be life-threatening.Miguel is also the author of: More Thank You Can Handle: A Rare Disease, A Family In Crisis, And The Cutting-Edge Medicine That Cured The Incurable. Miguel is a gifted story teller and he shares his family's chaotic, exhausting, funny, heartbreaking nerve-racking journey in a very authentic way. It's an enlightening and illuminating story all on this SFN Dad To Dad Podcast. Links: More Thank You Can Handle: A Rare Disease, A Family In Crisis, And The Cutting-Edge Medicine That Cured The Incurable CGD Association of America - https://cgdaa.org Be The Match - https://bethematch.org/Duke PBMTU Family Support Program - https://dukepbmtfamilysupport.org/NIH - https://www.nih.gov Ronald McDonald House - https://www.rmhc.org/ COTA (Children Organ Transplant Association) – https://cota.org/ Immune Deficiency Foundation - https://primaryimmune.org/ Make A Wish Foundation Hudson Valley - https://wish.org/hudson North Carolina Cord Blood Bank - https://sites.duke.edu/ccbb/ Website – https://www.miguelsancho.net Email – miguelsancho6464@gmail.com LinkedIn - https://www.linkedin.com/in/miguel-sancho-b7aa37a/ Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations. Special Fathers Network: https://21stcenturydads.org/about-the-special-fathers-network/Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA Please support the SFN. Click here to donate: https://21stcenturydads.org/donate/

Today I welcome Pat and Bob Carroll to talk about Primary Immunodeficiency Disease and COVID-19. Pat Carroll is a registered respiratory therapist and a registered nurse. She has clinical experience in critical care, emergency/trauma nursing and home health care, and she has taught a variety of health professionals in clinical and classroom settings. Ten years ago, she was diagnosed with primary immune deficiency which completely changed her life (and her husband's). Once she regained her health, she became an active volunteer with the Immune Deficiency Foundation, leading the Get Connected Group in CT. She also became involved with the National Organization for Rare Disease in CT, which has developed a coalition to work on common legislative issues and to make sure that none of our efforts would clash with other groups of people with serious, rare diseases.  Bob Carroll began his career as a sales representative in technical, industrial sales. He was a sales consultant developing innovative marking techniques in various industries when his company was bought, and all of the sales consultant positions were eliminated. He took this opportunity to take a break and do some substitute teaching to fill his days.  A principal where he was subbing asked him to be a one-to-one paraprofessional for a challenging kindergartener entering the school. He agreed, and worked with this special little boy while going to school at night to get his teaching credential. He then became the first special ed, vocational ed, transitional planner for an alternative high school that served multiple school districts. He taught life skills, job skills and prepared students for a future after high school. He retired from teaching 3 years ago. 

There are a lot of people who 'look healthy' who are at risk or may be living with things you have no idea about. In this episode I talk with John Boyle about 'invisible illnesses'. John Boyle serves as President & CEO of the Immune Deficiency Foundation (IDF) since 2017. His career has been devoted to nonprofit management and health advocacy, most recently as Vice President of External Relations at IDF. In 1978, John was diagnosed with a primary immunodeficiency (PI), specifically X-linked Agammaglobulinemia, and has received immunoglobulin replacement therapy since he was six months old. John is focused on advancing the Foundation’s advocacy, education, and research initiatives – both today and in the future. He leads a dedicated team working to grow the IDF community while anticipating future challenges for those affected by PI, such as emerging treatments, healthcare policy, and access issues. Listen to my other podcast - stories of adventure in the great outdoors - plus tips, gear, and conservation: www.dayfirepodcast.com If you enjoyed this episode please share it with your friends, and check out the website duringthebreakpodcast.com Please consider supporting the podcast by becoming a Patron: https://www.patreon.com/duringthebreakpodcast This podcast is powered by ZenCast.fm

“IT'S IMPORTANT THAT PEOPLE KNOW THAT IT IS GOING TO BE OK AND THAT THERE IS IS POSSIBILITY"'- Jodi TaubJodi Taub, LCSW is a psychotherapist in NYC (currently providing telehealth only due to COVID-19). She has over 20 years of direct care experience with children, adolescents, and adults including individuals, couples, family, and group therapy. She specializes in treating issues related to Mood and Anxiety Disorders as well as the emotional issues that arise from coping with Chronic Illness. Jodi is also an expert lecturer, public speaker, published writer, researcher and active contributing member of the Immune Deficiency Foundation.➡️ visit https://www.joditaubtherapy.com/SHARE

John Boyle was diagnosed with X-linked agammaglobulinemia (XLA) in 1978, when he was just six months old. On today’s episode, John and I talk about the routine management of his condition that allows him to live with minimal symptoms, and how taking care of his health was instilled in him at an early age. We also talk about his work with the Immune Deficiency Foundation, and why, after years of being attuned to his physical health, he realized it was time to give some attention to his mental health, too.  Learn more about John and check out the show notes here. Follow Made Visible on Instagram. We want to learn more about you! Tell us about you and what got you listening to Made Visible here. 

On today’s episode, we’re covering the recent coronavirus outbreak and the impact that global health challenges can have on people with invisible and chronic illnesses. To get expert perspectives, I spoke with Hernando Garzon, MD, an emergency medicine physician with experience in disaster response and global health; Andrew Kessler, founder of Scough, a company that makes scarves and bandanas that function as masks; and John Boyle, president and CEO of the Immune Deficiency Foundation.  Learn more about Hernando, Andrew and John and check out the show notes here. Follow Made Visible on Instagram. We want to learn more about you! Tell us about you and what got you listening to Made Visible here.  Want to ask our host, Harper Spero a question? Send a voice memo here! 

Hemophagocytic lymphohistiocytosis (HLH) is a severe systemic inflammatory syndrome that can be fatal. HLH occurs when histiocytes and lymphocytes become overactive and attack the body rather than just bacteria and viruses. Join the Immune Deficiency Foundation as we sit down with Dr. Michael B. Jordon, from Cincinnati Children’s HLH Center of Excellence, to discuss the identification and management of HLH. To learn more about inheritance and PI, visit the IDF website: https://primaryimmune.org/about-primary-immunodeficiencies-diagnosis-information/inheritance. To learn more about HLH, how to diagnosis HLH, research and more, please visit: https://www.cincinnatichildrens.org/service/h/hlh.

The Emotional Side of Living with a Chronic Illness“It's important that people know that it IS going to be OK and that there is IS possibility"' - Jodi TaubJodi Taub, LCSW is a psychotherapist in NYC. She has over 20 years of direct care experience with children, adolescents, and adults including individual, couples, family, and group therapy. She specializes in treating issues related to Mood and Anxiety Disorders as well as the emotional issues that arise from coping with Chronic Illness. Jodi is also an expert lecturer, public speaker, published writer, researcher and active contributing member of the Immune Deficiency Foundation.➡️ visit https://www.joditaubtherapy.com/SHARE

The transition to college is both stressful and exciting. For those living with a chronic disease like a primary immunodeficiency (PI), adjusting to campus life can be even more challenging. College students with a chronic condition generally require strategies to balance academics, socializing, and managing their disease. In this episode, the Immune Deficiency Foundation explores resources for college students with PI and offers tips for making the most of your college years.

Colin and Lisa, the Founders of Immune Competence, sit down and talk about their journeys with Primary Immunodeficiency, as well as best practices they have picked up to become successful patients. Lisa and Colin discuss why they started Immune Competence, and why everyone should go to a National Conference with the Immune Deficiency Foundation. The conversation jumps around to the Olympics, must have sick items, and yeah even an idea for a PI Singles dating website.

Maddie Shaw is an active advocate with the Immune Deficiency Foundation and has a Primary Immune Deficiency Disorder (PI). She is also the Founder & Leader of Maddie’s Herd. Maddie's Herd raises awareness and research funds ($22,000 so far of her $50,000 goal!) for the ImmunoDeficiency Foundation (IDF) as 1000s of Americans are battling immunodeficiency disorders through prolonged diagnosis. Maddie is teaching doctors to "Think Zebra" when they hear hoofs. Like Maddie's Herd on Facebook to stay up to date. Don't forget to get your very own Maddie's Herd T-shirt and bracelet, both of which Ed Sheeran owns, he even wore his bracelet while playing on stage!