What is SCID?

Dear Partners, Supporters and Friends, 

It’s with a heavy heart that I write to inform you of an important development regarding SCID Angels For Life Foundation. After thoughtful consideration and in accordance with our bylaws, the Board of Directors has made the difficult decision to dissolve the organization at the end of this year. 

I have agonized over this monumental decision for months and have ultimately decided it is both in my best interest and the best interest of the organization, to close this chapter. The driver of this decision is my metastatic breast cancer diagnosis. For the past year and a half, I’ve been able to manage both the needs of the foundation and the needs of my own medical care. Unfortunately, these competing priorities come at a cost, and I can no longer keep doing both. While this marks the end of our incredible journey as an organization, the impact we have made is immeasurable and will live on in perpetuity!

What began as a quest to heal my broken heart after the loss of my first child to SCID in 1993 and then discovering my second baby would be born with the same devastating condition, quickly turned into something more inspirational than I could have ever imagined. Connecting with other SCID families and sharing similar experiences and stories became extremely therapeutic for me. So, in 2008, my husband and I decided to form SCID Angels For Life Foundation, as a means to formally represent the SCID Community and give a voice to this worldwide pediatric emergency. I truly began to feel like I had found my true purpose in life.

Your contributions and support, whether through time, effort, or donations, have been the cornerstone of our success. While our first mission was to drive education and awareness, we succeeded in that and so much more. In 2018, after a 10-year battle, we succeeded at getting newborn screening for SCID passed in all 50 states, we have supported numerous research studies, and created a global community to support those who have to navigate all of the challenges SCID brings. Together, we have made a real difference in the lives of so many people at times when they needed it the most.

During this journey, I have been honored to be the voice of the organization. I’ve tried to take advantage of every opportunity offered to share my story and educate the world about SCID. Whether it’s been globally advocating for newborn screening, educating nurses, doctors and the community at large on the importance of “A family’s perspective on what it’s like to be diagnosed with a rare disease”, sitting on the board of many professional organizations, testifying before the FDA , and being a contributing author on multiple publications, it’s all been a great honor and a real privilege. Thank you for your help and support in making that all possible.

I am often reminded that this tight knit community of patients, families and physicians has given me so much more than I could have ever imagined, and I am abundantly proud of our accomplishments. To that end, as part of our dissolution process, we have established an endowment fund at the University of California San Francisco (UCSF) keeping the legacy of SCID Angels going into the future. The endowment is called the SCID Angels Legacy Fund. All remaining assets will be distributed into this fund to specifically support the advancement and research of SCID. Those wishing to support SCID research can go to https://donate.ucsfbenioffchildrens.org/scid-angels. 

For those who are interested in continuing to specifically support SCID families, we ask that you consider donating to Barb Ballard’s new organization, SCID Foundation, which can be found online at www.SCIDFoundation.org.

Thank you again for the role you’ve played in helping to make this community what it is today.  

With great appreciation,

Heather Smith
President and Founder
SCID Angels For Life Foundation

Our Mission

SCID Angels for Life is committed to increasing awareness, providing a safe environment for families to connect, granting family scholarships, promoting research, and providing parent and family education for those affected by Severe Combined Immune Deficiency. SCID Angels believes that through our advocacy and support we can empower every patient to strive for the highest possible quality of life.

“Knowledge is Power” 

Why Support Us

By supporting SCID Angels you help make our mission a reality. It enables families to find the emotional and oftentimes the financial support they need to live with a child with a life-threatening illness.

For many families, the emotional toll involved in the treatment of a child with SCID is a lonely and frightening journey. We aim to bring families together to emotionally support one another.

The cost of travel not only to hospitals but also to educational meetings is often too much for a family already stretched beyond its means. The cost of special education, insurance co-pays, or specialty equipment not covered by insurance can be impossible.

We aim to assist as many families as we can with these out of pocket expenses, but we need your help. Your donation today will ensure that families in need are not turned away.

Connect with Community

The SCID Angels Family Support begins with our Facebook Page and a private Facebook Group. We can also be found on Instagram and Twitter. Our Facebook Group was created to give families a safe place to share their questions, concerns, stories and accomplishments with one another. This moderated group is open to SCID patients and their immediate family members. If you are a SCID patient or have a SCID child, connect with us and with our amazing network of families from around the world. You don’t have to face SCID alone.