This beautiful moment highlights Jordan, 8, who has Giant Axonal Neuropathy (GAN), a highly rare illness that is also called the childhood form of ALS. While there is no cure or treatment—yet—for GAN, Jordan is participating in a clinical trial at National Institutes of Health to help find a revolutionary treatment. Jordan’s mom, Mayra, was determined to educate herself about her son’s disease and treatment options when, at age 4, he became only the 30th patient worldwide to be diagnosed with GAN. This led her to a clinical trial at NIH and to The Children’s Inn, where the family has spent more than 70 nights so far. Since becoming the 9th patient in the GAN gene-therapy trial, the family has found new hope that their son’s disease can be stopped from progressing. The Children’s Inn, located on the NIH campus, provides free lodging and support to more than 1,700 seriously ill children like Jordan every year who seek hope and help in a clinical trial at NIH.
L'Arche Tahoma Hope
L'Arche Tahoma Hope is a community of friends working together to help make known the gifts of people with developmental disabilities. Through sharing all the obstacles, triumphs, and beautiful moments of daily life, all members of its community grow into more caring and understanding people.
Ounce of Prevention Fund
Hilary is a doula for a home visiting program launched by the Ounce of Prevention Fund, an organization that advocates for and provides the highest-quality care and education for children from birth to age five. Hilary’s doula work is integrated as part of a young parent’s long-term involvement in a comprehensive home visiting program that can continue until the child reaches pre-K or kindergarten. Through this program, Hilary works primarily with first-time, teen parents to help them build strong parent-child bonds right from the beginning during pregnancy. Doulas provide weekly home visits to encourage prenatal care, offer ongoing support at the hospital during labor and delivery, and provide postpartum home visits for six to eight weeks. As they work together, mothers and doulas, like Hilary, forge incredible bonds that ultimately help young families establish the strongest start possible. We are proud to partner with the Ounce and so happy to share a beautiful moment like this one.