@SCIDFoundation profile picture
SCID Foundation @SCIDFoundation
Joined August 2024
  • Tweets 16
  • Following 37
  • Followers 6
12 Photos and videos
tiktok.com/@scid.foundation/… SCIDFoundation.org
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April is Primary Immunodeficiency (PI) Awareness Month 💙 In PIs the immune system doesn’t work properly. The most severe form is SCID. Early detection through newborn screening saves lives. Help make a difference: Learn more: SCIDFoundation.org #PIAwareness #SCID
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New Year, New Connections 🤝 Navigating SCID? You don't have to do it alone. Join chatSCID for honest conversation with families who understand. Whether you have questions, want to connect, or are ready to pay it forward — this space is for you. Register: eventbrite.com/e/chatscid-ja…
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💙 Your partnership makes this possible. In 2025, 23 SCID families received life-saving scholarships from the SCID Foundation. Help us give hope, support, and relief to families facing SCID today. Donate 👉 scidfoundation.org/donate #SCID #scidawareness
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Gene therapy for ADA-SCID has shown strong success, but high regulatory and development costs still block access. Rare disease pathways need improvement to bring these treatments to patients. 🔗 facebook.com/share/p/1W9kkv2… #SCID #SCIDAwareness #SCIDwontstopthiskid #ADASCID
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Gene therapy for rare diseases like CGD mirrors the SCID journey—long, complex, and in need of awareness, funding & advocacy. Researchers like Dr. Harry Malech are paving the way 💙 nytimes.com/2025/09/22/healt… #SCIDAwareness #GeneTherapy #RareDisease

These Patients Got the Cure. Then It Went Away.

Gene therapies for rare diseases are frequently developed then discarded by drug companies because they can’t afford to produce the treatment for more patients.

nytimes.com
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September is Newborn Screening Awareness Month. A simple heel prick at birth can detect Severe Combined Immune Deficiency (SCID) before symptoms appear—saving lives. Since 2018, all 50 U.S. states screen newborns for SCID. Every test matters. Every life counts. #SCID #NBS
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On July 31, over 20 US Representatives issued a letter to HHS's Secretary requesting information about the disbanding of the ACHDNC, short and long-term plans for newborn screening, and plans for stakeholder engagement by Aug 6. Read More: morrison.house.gov/media/pre… #SCID #ACHDNC
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tiktok.com/@scid.foundation/…

TikTok · SCID FOUNDATION

TikTok | Make Your Day

tiktok.com
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☀️ SCID Summer Social—July chatSCID! ☀️ 📅 Tuesday, July 22nd 🕖 6pm EDT | 5pm CDT | 4pm MDT | 3pm PDT Grab a cool drink, put on those shades, and join us for a mid‑summer meetup that’s all about connection and good vibes. Registration is FREE but required bit.ly/46nIC0P
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England plans to sequence every newborn’s genome within 10 years—screening for 200 conditions, including SCID types missed by TREC like Reticular Dysgenesis, ZAP70, & ADA-SCID. Article: bit.ly/3VUbXK2 Conditions list: bit.ly/4coS8ze
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ADA SCID: Plain Language Summary of the article Multi-Year Registry Study of Elapegademase Treatment in Patients With ADA-SCID Requiring Enzyme Replacement Therapy pmc.ncbi.nlm.nih.gov/article… in supplements, scroll to page 7 #SCID #ADASCID #Revcovi
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New ADA SCID article Multi-Year Registry Study of Elapegademase Treatment in Patients With ADA-SCID bit.ly/3FOHKYb To view a Plain Language Summary of the article, Download the PDF here and scroll to page 7. bit.ly/3R1f7sX
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An abnormal SCID result on a newborn screen means your baby may have low T cells, which are vital for fighting infections. While most babies with an abnormal result do not have SCID, it’s essential to follow up immediately - Visit SCIDFoundation.org #SCID #scidfoundation
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I want to welcome everyone who has found the SCID Foundation through SCID Angels For Life Foundation. Together, we can continue to make a difference for SCID patients and their families. For those who don’t know me, I’m Barb Ballard, and Im the founder of the SCID Foundation.
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read more: facebook.com/SCIDFoundation/… #SCID #SCIDFoundation #SCIDAngels

SCID Foundation

I want to welcome everyone who has found the SCID Foundation through SCID Angels For Life Foundation. Together, we can continue to make a difference for SCID patients and their families. For those...

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