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Immune Deficiency Foundation
Registrace 19. 08. 2009
The Immune Deficiency Foundation (IDF) community is a creative and committed group of individuals who are busy reaching out to help spread awareness and education about primary immunodeficiency diseases (PI). Tune in to see what is happening.
Video
Compromised: Life without immunity -- Trailer 1
zhlédnutí 123Před 2 dny
Coming soon. To request a screening, visit primaryimmune.org/compromised
Compromised: Life without immunity -- Trailer 2
zhlédnutí 146Před 5 dny
Coming soon. Request a screening at primaryimmune.org/compromised.
Carry on by Ironmouse | A new single from the film Compromised: Life without immunity
zhlédnutí 25KPřed měsícem
Carry on by Ironmouse Produced by Shirobeats Written by Ironmouse, Rachel Moore, and Zach Moore Featured in the new documentary "Compromised: Life without immunity". To get involved in the fight for those with immune deficiency, visit primaryimmune.org. LYRICS My mom rocked me to sleep On nights when I was weak Sometimes dad would do the same for her Fear what I can't see The air is filled with...
Ask the expert: PI and travel
zhlédnutí 288Před 2 měsíci
A discussion about how to safely travel as a person with primary immunodeficiency. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. This webinar was presented with support from Amgen Rare Disease, Sumitomo Pharma, Octapharma, Kedrion Biopharma, Accredo, ADMA Biologics, Chiesi Global Rare D...
Ask the expert: Primary immunodeficiency and autoimmune conditions
zhlédnutí 805Před 3 měsíci
Jack Routes, M.D., Professor Emeritus of Pediatrics, Medicine, Microbiology/Immunology Chief, Allergy and Clinical Immunology at Medical College of Wisconsin provides an overview of the relationship between PI and autoimmune conditions. This webinar is provided with support from Takeda, CSL Behring, Grifols, Amgen Rare Disease, Sumitomo Pharma, Accredo, Pharming, and ADMA Biologics. The informa...
Immunocompromised Collaborative Congressional Briefing 2024
zhlédnutí 271Před 3 měsíci
Ask the expert: PI and fatigue with Dr. Joud Hajjar
zhlédnutí 1,4KPřed 4 měsíci
0:00 - 4:09 - Introduction 4:10 - 33:37 - Presentation 33:38 - 58:44 - Q&A 58:45 - 1:04:34 - Closing Dr. Joud Hajjar provides an explanation of the causes and potential treatments for symptoms of fatigue with primary immunodeficiency. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. View a...
Ask the expert: managing multiple conditions with Dr. Ramsay Fuleihan
zhlédnutí 450Před 4 měsíci
0:00 - 5:01 - Introduction 5:02 - 30:50 Presentation 30:51 - 1:16:49 Q&A 1:16:50 - 1:24:39 Conclusion Dr. Ramsay Fuleihan provides answers to questions submitted by the PI community regarding the management of multiple conditions. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. This webin...
Complement deficiencies
zhlédnutí 687Před 5 měsíci
0:00 - 3:20 - Intro 3:21 - 53:47 - Presentation 53:48 - 1:03:31 - Q&A This presentation was on Complement Deficiencies and was led by Eveline Wu, MD, MSCR. Dr. Wu is an Associate Professor of Pediatrics at the University of North Carolina Chapel Hill and specializes in both Allergy/Immunology and Pediatric Rheumatology. Click here for a PDF of this presentation: primaryimmune.org/sites/default/...
COVID's Impact on the PI Community
zhlédnutí 497Před 6 měsíci
0:00 - 4:26 - Intro 4:27 - 50:10 - Presentation 50:11 - 1:24:04 - Q&A 1:24:05 - 1:27:06 - Conclusion Dr. John Sleasman delivers a presentation and a Q&A on COVID-19, vaccines, and more. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Undiagnosed (feat. Dr. Kelley Hagerich): Two Different Traumas
zhlédnutí 383Před 6 měsíci
One of the most universal issues those with primary immunodeficiency face in the U.S. is simply navigating a complicated medical system. Getting a referral to an immunologist can feel absolutely insurmountable, even before the inevitable struggles with prior authorizations and annual reviews from insurance companies for life-changing, or even life-saving, medication. On this episode of Undiagno...
Young adult roundtable: college, mental health, and PI.
zhlédnutí 193Před 6 měsíci
This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Viewer discretion is advised. This episode of the IDF Podcast is presented with support from Takeda, Horizon Therapeutics, CSL Behring, and Grifols. On this episode of The IDF Podcast, we turned to six young people who are longtime volunteers, Cassi...
Undiagnosed (feat. The Autism Dad) Father and son
zhlédnutí 277Před 7 měsíci
Rob Gorski shaped the way we discuss parenting for neurodivergent children with his acclaimed blog, The Autism Dad. While all three of his sons are on the autism spectrum, his eldest son, Gavin, is diagnosed with CVID, as well. In this episode of Undiagnosed, Rob candidly discusses his family's journey, mental health, and the struggle of impossible decisions. Read Rob's blog at www.theautismdad...
Mast cell activation disorder with Dr. Anne Maitland
zhlédnutí 3,7KPřed 7 měsíci
0:00 - 4:39 - Intro 4:40 - 1:01:38 - Presentation 1:01:39 - 1:24:15 - Q&A 1:24:16 - 1:27:13 - Conclusion and reminders Dr. Anne Maitland provides an overview of mast cell function and what causes them to misbehave. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. This webinar was presented...
Lunch & Learn: ataxia-telangiectasia
zhlédnutí 408Před 7 měsíci
0:00 - 5:52 - Introduction 5:53 - 43:15 - Presentation 43:16 - 55:11 - Q&A 55:12 - 57:42 - Conclusion Dr. Howard Lederman of Johns Hopkins provides an explanation of the causes and manifestations of ataxia-telangiectasia. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Presented with supp...
Shut up, I'm not crying you're crying 😭
Thank you for being a BadFriend -Bobby lee
Thank you for your hard work ❤❤❤
I have enjoyed following Ironmouse off and on since she did an interview with Asmongold a couple years ago. As a nurse I have been especially enjoying seeing bits and pieces of her health journey unveiled alongside her desire to work, stream and enjoy life with her friends and others (like chat) that she had met along the way. As part of my practice especially since the pandemic, I have been trying to find what brings joy to my patients and/or their families. Special people like Ironmouse or their families have helped me to share more hope and joy with others to give my life and practice more meaning, especially after the burnout and despair of the pandemic. I hope Ironmouse can continue to strike a balance between enjoying life and talking or not talking about the challenges she faces with health. There is so much more life for her, her family and others that she touches through the internet. I hope she can continue to bless others and enlighten us through the bittersweetness of life which is often the best part.
Thank you. The newborn baby analogy is something I havent tried but will now.
The savagery of the American healthcare system never ceases to amaze me.
Fuck this podcast. I'm crying. Fuck this.
Ourrrrrrrrrrrrrr baaaaaaaaaaad
Thank you for this info.I have hesitated to push myself with exercise as I am so tired, so your advice is very helpful.
Thank you so much for sharing your story. I am a 1st year medical student and I am currently studying Wiskott-Aldrick Syndrome. I appreciate that you have told your story. I will always remember you.
Which subclass deficiency do you have?
What treatment do you get? What was your disease course like? It would be helpful to know
mouse... i am probably late to the party for seeing this. But... thank you.... I have several friends that are just trapped from their disabilties... You are so inspiring that even if someone has physical or mental limits. they can still create beautiful things! You always touch my heart and I am very thankful for you. Keep rockin Mousey! you are amazing!
www.ncbi.nlm.nih.gov/pmc/articles/PMC8538991/ Came across this in my reading
fuuuudge...i start crying at the start without the @ironmouse voice..-.-...thx for all the hours of happynessyou give me during work time in my night shift and in my days off ..I'm working to make my Vtube png and start with the voice over, thx for the courage you give me to try...
🌟🗽
...
Her story deserves to be heard by everyone.
Surprised it took over 18 min for something to be bleeped. Lol
The Song Is so good! Mousey just doesn't miss.
Thank you so much. I appreciate this video
I really resonated with when she was talking about her struggles with insurance. That made me think, I feel like there has to be an alternative to the two models of insurance that I can think of off the top of my head, where either everything is totally privatized and for profit, or everything is totally government-run and bogged down in bureaucracy.
Mousey really inspired me to donate plasma more regularly. I want people to have access to the medication they need and it's nice to be able to contribute to that.
Yes!!!! This is on Spotify!!!
💓
i started crying only 10 mins in, just hearing all her troubles, loneliness and pain and being able to relate to her just tore me apart ;-; im so happy she's in such a better place in life now (i hear she can move and go out now? :') ) makes me hopeful that i can control my health condition too ;-;
banger
This really needs more views.
Its so cool that you teamed up with a vtuber that has not hid her condition from her community
Thank you mouse and everyone who has been through the journey together we can accomplish anything. 🖤
Is polycythemia Vera autoimmune
I thought PI is present from birth and does not develop later, but you talk of it developing later in life. Please explain
This is a Kingdom Hearts-esque, middle-of-an-anime-season quality song. Awe inspiring
I still vividly remember when she courageously asked for helped when we in her start of fame. The OVERWHELMING support was crazy. A desk just so she could do things was immediately funded and then some. No questions asked. And it’s proof this community, the world, can be beautiful. I’m so proud of Mousey! Thank you for allowing her voice to be spread so that those with immune deficiency aches know they are not alone, and that we are teaming up so things can get better.
If I recall correctly it was a $2000 goal for a new workspace. Her own term for her bed since she was still bed ridden and hated thinking of it like that. Her community (much smaller almost four years ago), passed the target in less than ten minutes, before she could even finish explaining why she needed it. Her Precious Family (what she calls us) has supported her in the different ways we can ever since, and thanks to her message, I'm sure many others have been helped by us and people like us around the world. And none of it would be possible without people like the IDF. And long may it continue.
I remember watching her break down from generous donations that allowed her to get off the ground streaming, now shes one of the more well known streamers and continues to be awesome
Let this song remind you to donate plasma.
🥺 mousey 💜
Damn mouse you killed it
Beyond beautiful. TvT
O
I want to be a vtuber like her so badd😫 (I'm a guy with CVID and I'm turning 18 soon) (she's my role model❤)
I want to do it mostly to spread awareness of this disease to people as Ironmouse is doing, to have fun and be able to do the only thing I can in the meantime, love and peace everyone✌️
I remember hearing about Ironmouse's illness, and that surprised me because I never heard of Immune Deficiency. She has my condolences. God bless her from on high.
How do mast cells get involved in Parkinsons/Alzheimers and is research being done in this area??
Mast Cells Gone Wild! Rogue Mast Cells! Sounds v exciting vs the boring day to day counting out supplements and then needing a nap!
❤❤❤
This song always makes me sad i wish i could donate later😢
This is so so beautiful and im glad they called mouse to talk about it