Congratulations to
@CDawgVA
on winning Best Philanthropic Stream Event and
@ironmouse
for winning Best VTuber at the
@StreamerAwards
, IDF is so grateful for your support!
We cannot express how grateful we are. Absolutely blown away. Thank you so much for your support and dedication to the PI community. You all just changed so many lives.
Last year I said I wanted to raise a million dollars for charity and raised an amazing $905,383.
This year I wanted to make sure I succeed. I thought it could be done, but didn't expect in my wildest ambitions we'd crush that in one event. Thank you everyone and the team! 🫡😭
HUGE congratulations to
@ironmouse
for becoming the most subscribed creator on Twitch. 🎉🎉 SO well deserved!! Thank you for all you do for the primary immunodeficiency community. 🫶
We are so incredibly grateful for everyone's generosity in supporting the primary immunodeficiency community. This will help us improve the diagnosis, treatment, and quality of life of people affected by PI. THANK YOU!
Thank you for $550,000 dollars raised in this cyclethon.
This honestly was really physically demanding on us and pushed us to our limits. But we did it and raised a shit ton of money for
@IDFCommunity
Genuinely the best community I've ever been a part of. Thank you 😭😭💕💕
Many thanks to
@CDawgVA
for participating in
@AbroadInJapan
in support of IDF. Your generosity allows us to continue advocating for the PI community. We are honored and grateful for the outpouring of support. 💙🦓
A NEW SINGLE by
@ironmouse
drops today for our upcoming documentary "Compromised: Life without immunity”! We’re honored to work with Ironmouse on a song that captures the heaviness and hope of carrying on with primary immunodeficiency. Listen now: 🎵
Congratulations to
@ironmouse
for winning vtuber of the year at the Streamer Awards! We are so grateful for the support both she and
@CDawgVA
have shown us over the past couple of years. Thank you both so much for making such an impact on the primary immunodeficiency community!
Congratulations to
@Ironmouse
for winning Creator of the Year! 🎉 Check out this podcast episode, where shares her journey before and after her CVID diagnosis, and why she uses her platform to encourage plasma donation.
#TheGameAwards
We're so excited to hear these speakers, and many more, at the 2024 Primary Immunodeficiency Conference! Click here to view the conference agenda, register, or apply for a scholarship (deadline 3/18): .
@ManishButte
@ironmouse
@yourgpsdoc
On a new episode of Undiagnosed, Twitch sensation and IDF community member
@Ironmouse
shares her journey before and after her CVID diagnosis, and why she uses her platform to encourage plasma donation. Listen on YouTube or wherever you get your podcasts!
Congratulations to
@ironmouse
, who hit 2 MILLION FOLLOWERS on Twitch last week! Mouse is unstoppable, and the primary immunodeficiency community is so lucky to have her support.
Thank you so much to
@ironmouse
and the entire streaming community for the incredible support you've shown the primary immunodeficiency community. We're so grateful!
We are so honored by the support that
@CDawgVA
,
@ironmouse
, and the entire streaming community continue to give to people with primary immunodeficiency. Excited for Friday!
@ironmouse
@CDawgVA
@AbroadInJapan
@premier_two
We are so grateful for everyone's continued support. This allows us to continue advocating for the PI community to improve diagnosis, treatment, & quality of life for those affected.
Thank you so much to the IDF for letting me come on. Having this interview was hard to do and such an emotional rollercoaster for me. Thank you to everyone who gives it a listen and thank you to my community for changing my life. THANK YOU IDF it was truly an honor.
We're so appreciative of
@Palworld_EN
for going above and beyond to support the charity auction! These ads are fantastic- thank you for helping people understand more about us and the importance of plasma donation. 💙
Congratulations to
@CDawgVA
who raised over $500k for the Immune Deficiency Foundation at his charity auction!
We were so proud to play a small part in it, and thank you everyone for donating!
Here are the animations we prepared for the event! Enjoy!
🤝Pals help Pals! 🤝
Congratulations to our friends
@ironmouse
&
@CDawgVA
on their well-deserved nominations at the upcoming
@StreamerAwards
! Their support has been an absolute gift this past year. You can vote for them here:
People with primary immunodeficiency (PI) often rely on immunoglobulin that can't be manufactured without the donation. The therapy is both lifesaving and often lifelong, and it plays a vital role in the lives of many people with PI.
Don't miss this episode!
@CdawgVA
talks about his history growing up in Wales, moving to Japan to pursue voice acting, and how meeting his friend
@ironmouse
led him to raise money for IDF. Tune into Connor's auction to raise funds for IDF on June 29!
I donated plasma for the first time ever! It took 2 hours and 30 minutes and I got $80! The app says I have helped 2 people wow!
I used to not able to donate blood or plasma because I was under the qualified weight, but now I am chonky enough, so I guess that is a positive 😂
We're excited to attend the Clinical Immunological Society annual meeting May 1-4 to connect with providers across the U.S. to discuss clinical immunology, primary immunodeficiency (PI) diagnosis, research, and treatment! Stop by and say hi!
@ironmouse
This is amazing! Thank you so much for thinking of the Immune Deficiency Foundation (IDF) and individuals with primary immunodeficiencies (PI).❤️
@Twitch
@CDawgVA
Thank you so much for helping raise awareness for primary immunodeficiencies. We are so blown away by all of this and are beside ourselves with gratitude!
We are so grateful! Thank you so much to everyone who donated so that we can continue to improve the diagnosis, treatment, & quality of life of people affected by PI 🦓💙💚
It's been a few days since the charity auction, but I just wanted to say a massive thank you guys for helping me raise $55,000 for the
@IDFCommunity
. 💕💕
We'll be back raising more money in a week with the cycling event. 👀
@ironmouse
Thank you so much for sharing your time and talents with us! We couldn't be more grateful and we're so excited for everyone to hear the song. 💙
People
#LivingWithPI
often rely on
#plasma
donations for their lifesaving treatments. Plasma donations are needed now, more than ever. IDF helps to educate donors about their critical impact through our
#PlasmaHero
initiative. To learn more, visit .
During the 2024 PI Conference, the Immune Deficiency Foundation (IDF) presented awards to several individuals for their scientific and healthcare achievements, leadership roles, strides in advocacy and awareness, and fundraising efforts.
Siblings Ava, Olivia, and Landon Langenhop received gene therapy to treat leukocyte adhesion deficiency 1 (LAD-1) four years ago. Today, the children are active and healthy, with no infections or illness.
@CDawgVA
We are so incredibly grateful for everyone's generosity in supporting the primary immunodeficiency community. This will help us improve the diagnosis, treatment, and quality of life of people affected by PI. THANK YOU!
I can't stop crying. Thank you all for the incredible love and support you have given me and the
@IDFCommunity
. We smashed our goal and ended the night raising over $100k. I love you my precious family. Thank you for spending 11 hours with me. Best 4 year anniversary ever!💖😈🎉
#DYK
Primary immunodeficiencies (PI) are a group of more than 400 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly? Learn more about PI this National PI Awareness Month: .
#PIAwarenessMonth
@CDawgVA
@MakeAWish
@CashApp
@elgato
@ApariArt
There isn’t space here to truly thank you for all you have done to allow us to provide support to people affect by PI. It’s been an honor to be part of this amazing event!
On this day 49 years ago, David Vetter, affectionately known as the boy in the bubble, was born with severe combined immunodeficiency (
#SCID
), one of the most severe types of PI. To learn about his amazing life and legacy, please visit: .
Rutgers University junior Victoria Medl, diagnosed with primary immunodeficiency (PI), intends to build a career in immunology and help others also coping with a PI diagnosis
@CDawgVA
We are incredibly appreciative of your support and the support of this community. Thank you so much. You all are making a difference the lives of so many with primary immunodeficiency.
Join the waiting list for a screening of the Immune Deficiency Foundation's much-anticipated documentary “Compromised: Life Without Immunity,” which debuted at the 2024 PI Conference, held June 20-22 in Chicago.
That’s a WRAP! Thank you so much to everyone who attended the
#2024PIConference
. It was such a joy to see everyone for a weekend of learning, connecting, and networking. See you again in 2026!
Today is IDF’s birthday! We've come a long way since our founding in 1980, and we could never have made it this far without your amazing support. In honor of our birthday, consider giving a birthday gift to IDF to help the
#IDFCommunity
: .
We're excited to attend the American Osteopathic Association annual conference on September 19-22 to discuss primary immunodeficiency (PI) diagnosis, research, and treatment! Stop by to learn more and say hi!
Last week, we visited
#CapitolHill
with more than 80 advocates from the
#PIcommunity
to make legislators aware of
#PrimaryImmunodeficiency
and promote policies that ensure a healthier day, every day. Thank you to everyone who participated!
In 2023, the Immune Deficiency Foundation helped 30,320 individuals living with primary immunodeficiency. Click here to read more about how we supported the
#primaryimmunodeficiency
community in 2023!
#InvisibleIllness
is extremely difficult to live with, making awareness SO important. Folks with primary immunodeficiency, often "invisible," spend far too many years undiagnosed and looking for answers. Visit to learn more.
#invisibleillnessawareness
The 2024 Primary Immunodeficiency Conference is this week! If you aren't able to attend this year's conference you can watch the documentary premiere LIVE on Youtube on June 21 at 7:45 pm CT! Subscribe to our channel and turn on your notifications so you don't miss out!
This
#LaborDay
, we want to give special recognition to the American workforce who has been working throughout the
#COVID19
pandemic. Especially those who work at plasma centers and provide a lifesaving connection between donors and those
#livingwithPI
.
We're so proud to be selected for our first film festival. "Compromised: Life Without Immunity" will be a part of this year's Social Impact Film Festival! Learn more here
#filmfestival
#healthequity
#immunocompromised
In honor of his 100th infusion, Anthony and his family organized a wiffle ball tournament to help fellow members of the
#IDFCommunity
. We greatly appreciate all of his hard work and for thinking of IDF for his fundraiser. To learn about DIY giving, visit:
After battling a life-threatening infection, little Harry McLachlan received a diagnosis of chronic granulomatous disease (CGD), and in September 2022 a bone marrow transplant (BMT) provided him with a healthy immune system
We're so grateful for all of our volunteers who allow us to continue supporting this community! Whether you've visited a local plasma center, lent a caring ear to another, written to a legislator, supported an event, or managed a local support group - thank you!
A physical therapist and health professor diagnosed with common variable immune deficiency (CVID), Dr. Kerri Sowers' research has found that low to moderate physical activity can benefit the immune system
Nine-year-old Jax Ramirez is the youngest patient undergoing gene therapy for IPEX syndrome, a very rare PI, in clinical trials at Stanford University. “We’re just taking it one day at a time,” said his mother Missy Ramirez.
Today marks David Vetter’s birthday. David was affectionately known as the boy in the bubble after being born with Severe Combined Immune Deficiency (SCID). We continue to honor David's memory by raising awareness of PI and advocating for SCID newborn screening. 💙
We are pleased to announce that Kathleen Sullivan, MD, PhD,
@ChildrensPhila
is the recipient of the 2021 Community Hero Award at the
#2021PIConference
! .
It's imperetive we shorten the time to diagnosis for people with PI through advocacy, education, and research. Early diagnosis and proper treatment can prevent complications and improve quality of life for people with PI.
Tomorrow is David Vetter's birthday. David was born with a primary immunodeficiency (PI) called Severe Combined Immune Deficiency (SCID). We honor him by raising awareness of PI and advocating for newborn screening. 💙
It's
#InternationalPlasmaAwarenessWeek
! Many people diagnosed with
#primaryimmunodeficiency
rely on lifesaving, plasma-derived therapies. Click through to learn more about plasma and share this post to to educate your friends and family about the importance of plasma!
San Francisco
#WalkForPI
is Saturday! Here is a throwback to our amazing volunteers at last year's walk at the San Francisco Zoo. We greatly appreciate our dedicated volunteers, and if you are interested in donating your time to the
#PICommunity
, contact walk
@primaryimmune
.org.
If you receive immunoglobulin (Ig) replacement therapy, we encourage you to share the importance of plasma donation with your friends and family to encourage donation.
“What the Foundation's grant gave me—I’ll be honest—was the freedom to perform exploratory sequencing studies on patients that we didn’t know what was wrong with them,” said Dr. Megan Cooper. She discovered TLR8 gain-of-function (GOF) disorder, a new PI: .
#Breaking
Every state in U.S. now screening newborns for Severe Combined Immunodeficiency (SCID). IDF & partner organizations have worked over 10 years to achieve this. Read about milestone & what work lies ahead:
#SCID
#idfadvocacy
#newbornscreening
#NBS
Immunoglobulin (Ig) therapy is one of the most important and successful therapies for people with primary immunodeficiencies (PI) and is created using blood plasma. Retweet to educate others about the importance of
#plasma
!
#raredisease
#immunocompromised
We're in Columbus, OH in support of HB 177. This bill bans
#copay
accumulators in health insurance plans so that
#AllCopaysCount
. Make
#TheBuckeyState
the 21st state to take action against this unfair insurance practice!
We're excited to attend the Digestive Disease Week on May 18–21. Stop by booth 1533 to learn more and say hi! Immune Deficiency Foundation medical outreach programs supported by: Grifols, Horizon Pharmaceuticals, Pharming, Takeda, and X4.
It's World PI Week! This week is dedicated to educating health policy-makers, schools and families, and the public about primary immunodeficiencies (PI) to drive the earliest possible diagnosis and optimal treatment. Join us in raising awareness of PI this week!
#WPIW
We are so saddened by the loss of Vicki Modell. This is a great loss for the primary immunodeficiency community, yet we know her legacy will live on through the impactful work of the Jeffrey Modell Foundation.
The Jeffrey Modell Foundation is deeply saddened to announce that our beloved Co-Founder, Vicki Modell, has passed away.
Vicki was a strong, courageous, and empathetic leader, and was the heart of the Foundation for 37 years. We mourn her death and will miss her terribly.
We're working to establish Rare Disease Advisory Councils (RDAC)! We want legislators to hear directly from individuals with rare diseases like primary immunodeficiency! Click here to learn more and listen to our podcast episode with RDAC members.
Thank you,
@Capitals
Coach Todd Reirden, wife Shelby, & son Travis, for letting people know about life with
#CVID
in the
@washingtonpost
. You will inspire many by promoting awareness of primary immunodeficiency diseases.
#piawareness
#ALLCAPS
A
#PrimaryImmunodeficiency
diagnosis changes lives, and your support will make an impact! When Gary was undiagnosed, he experienced frequent hospital visits and recurring infections, but after receiving treatment, he is able to feel better. Donate today: