Frequently Asked Questions (FAQs)

Sickle cell disease (SCD) is a genetic blood disorder that causes red blood cells to become hard, sticky, and shaped like a crescent or sickle. These cells break apart easily and block blood flow, leading to anemia, severe pain episodes (pain crises), infections, organ damage, and other life-threatening complications.

SCD is inherited when a child receives a sickle cell gene from each parent. If a child inherits one sickle cell gene and one normal gene, they have sickle cell trait and usually do not have symptoms but can pass the gene to their children.

In the United States, SCD affects about 70,000–100,000 people, with new estimates suggesting over 120,000 cases. About 1 in 365 Black/African American babies and 1 in 16,300 Hispanic-American babies are born with SCD.

People living with SCD often experience unpredictable and intense pain crises, frequent hospitalizations, increased risk of stroke and organ damage, and shorter life expectancy — more than 20 years shorter than the general population.

Despite affecting more people in the U.S. than some other rare diseases, SCD receives significantly less research funding per patient. This underfunding limits treatment options, slows drug development, and contributes to health disparities in communities most affected.

Elizabeth “Lizzy” Nicole Holmes and her twin sister, Jacqueline “Jackie” Antoinette Holmes, were born with SCD. Lizzy passed away in 1999 at only eight years old, and Jackie bravely lived with the disease until her passing in 2024 at age 32. Their courage and love inspired the creation of this foundation.

Our mission is to honor Lizzy and Jackie’s legacy by raising awareness about SCD, supporting patients and families, and advocating for better care, research funding, and community resources.

Yes. The Lizzy & Jackie Holmes Sickle Cell Foundation is a registered 501(c)(3) nonprofit organization under the Internal Revenue Code. Donations are tax-deductible as allowed by law.

We provide educational resources, connect families with support networks, raise public awareness, advocate for equitable research funding, and help drive community initiatives, including scholarships, events, and patient assistance programs.

You can partner with us as a sponsor, make a donation, volunteer your time or skills, or participate in our awareness campaigns and events. Visit our website or contact us directly to learn how you can make a difference.

Yes. As a 501(c)(3) organization, your contributions are tax-deductible to the extent permitted by law. Donors will receive a confirmation letter or receipt for tax records.